Over the course of my entire life – childhood and adulthood – I had never been hospitalized, and I had never been as sick as I was with my pulmonary embolism. Recovery for me was taking a few days off work to get over a cold or stomach virus or having to stay in bed most of the day and not eat anything with a sore throat. When it came to running, words like recovery meant things like not running for three or four days after a race and taking it easy on my muscles, even icing and massaging, after a big event. I never looked at the time after my mother’s passing as recovery, but as grieving and settling into what became for me, a new normal. Recovery for other people might be time off their feet due to a broken or fractured running bone, but even they always came back within a matter of months. So, recovery was not a very deep word in my vocabulary and I soon found out, that I really had no idea what recovery from a pulmonary embolism looks like.
I vividly remember my first doctor’s appointment with my hematologist after being discharged from the hospital. It was about a week later, and I was feeling bad, beyond what I understood to be tired (I mean, truly feeling fatigued throughout every inch of my body), carting an oxygen tank, and convinced my summer was ruined since flip-flops (my warm-weather footwear of choice) could not be worn with my flesh-colored compression stockings. He asked how I was doing and said, “It’s good to have you with us!” I blinked in bewilderment at him and he said, “For as long as I’ve been doing this, you were the sickest I have seen a patient in a very long time. You’re lucky to be here, actually, what you just survived is not something to be taken lightly.” Okay, but I’ll be running and working again in no time, right?
He stopped what he was doing and sat down in front of me. I was perched on the end of the exam table, legs outstretched and not at all comfortable. It was hot, I was hot and I felt like I was suffocating inside the small exam room, not to mention I suddenly just wanted to go home.
“Sara,” he said, “Everything just changed for you. I mean everything. Your body has been through some pretty severe trauma and you aren’t going to be better in a week or a month or even a few months.”
More blinking.
And?
“The recovery we see from this, from people who have been through something like you have, it takes some time. A long time.”
So?
“You are looking at 1-2 years of recovery at this point. We’ll know better after a year what to expect with how things are going to go. You’ll probably be on oxygen for about a month, I would suspect. I don’t want you to stop wearing your stockings every day for about six months or so from here, well, you need to see me if you think you can stop wearing them daily. And, you’re going to be on blood thinners now.”
What do you mean, like, forever?
“It’s early to say, but you will probably have to manage this illness, to some extent your recovery and yes, blood thinners, for the rest of your life.”
Wait? What? One to two years? As in, YEARS?
He proceeded to talk about how while it was going to take some time, it didn’t mean I wouldn’t find a new normal and probably even go back to activities I enjoyed like running.
Activities I enjoyed? I was tunneling out of the conversation as the projection of my future played out in my mind.
That was just a week shy of one year ago. My doctor and I would have this conversation a minimum of six or seven more times because I couldn’t comprehend at that time why or how I would need that much recovery, what it felt like to be recovering at all and, as I would later find out, I was struggling with cognitive and memory delays that would alter my state of thinking and later contribute to my inability to successfully do the work I needed to for my job.
Still, I was devastated when I left the doctor’s office with my husband that day. Not even convinced I would do everything I could to recover faster, which I later found was impossible too. Just plain devastated. We had planned to stop at Chipotle for lunch and when we pulled up, just on the other side of the building where the doctor’s office was, I couldn’t get out of the car. There was a group of women about my age sitting out front at the picnic table in cute summer dresses and high heels. I was wearing sweats (that were cut off nonetheless), tennis shoes, and carrying an oxygen tank at 29 years old. I wasn’t getting out of that car. My husband finally convinced me we could get it to go and I did get out – after stashing my tank in the back seat – and only made it to the door, with his assistance, before I was gasping for air in the summer humidity. At about the same time, I felt a rush of blood down my legs (the first time of many unfortunately over the next year) and I burst into tears. We did not eat at Chipotle that day. In fact, I stayed home for the next month, except for appointments.
My reason for sharing this day with you is two-fold. One, I don’t think enough survivors are told what their recovery time will look like. I don’t think they are told to expect months if not years of recovery – that it is normal and to be expected. I don’t think a lot of doctors even know to tell their patients this because maybe no one has gone back to let them know what recovery looks like. This illness/injury isn’t, for many people, a-here’s-your-pill-and-you’ll-be-fine-in-a-couple-of-weeks-once-your-body-adjusts-treatment. It can take time – sometimes weeks, months, or years to heal.
And two, there is hope for healing. I only have myself to compare myself to, but looking at where I was a year ago to today, as I write this post, the improvements I have made are nothing short of amazing. I even feel like a different person now. My mind is more clear, I’m walking again and I can talk about what happened to me.
Some things to keep in mind as you begin recovery:
- Every person will have a different picture of what recovery looks like. Some people will return to work and normal life in a few days or weeks, some will be in recovery for the remainder of their lives, and still, others won’t even have the chance to recover because a PE will claim their lives. Recovery and treatment are unique to each of us.
- This recovery is full of ups and downs and it is not uncommon to continue experiencing symptoms of PE during recovery. No day is the same and while you may be fine one day, you could be feeling horrible the next. High anxiety about trivial things or a returning clot is not uncommon either. Depression is also a notable symptom of recovery as all of this is very difficult to deal with and understand for some. Make sure you follow up with your doctor if you are struggling with anxiety and/or depression because he or she may be able to prescribe medications to help you.
- Often the symptoms that diagnosed the embolism are some of the same things that will be experienced during recovery too – swelling and tenderness in the leg and shortness of breath or pain in the chest. Be sure to follow up with your doctor or emergency room if, at any time, you question what you are feeling to rule out a recurrent clot. My doctor told me, he still sees patients after a couple of years who experience the initial symptoms of their DVT or PE.
- After a pulmonary embolism, the body spends a lot of energy on healing the heart and lungs, even if they were minimally affected. You may feel more tired, more often and be sick, more often than before your PE. A day of gardening or a bike ride or even a full day of errands or work can leave you ready for bed before dinnertime. This is normal and if your body asks for rest, give it what it needs! It will take time to get back to even a low level of activity.
- You may come home from the hospital with no physical restrictions, which is confusing after feeling so horrible and being told you have a long recovery ahead of you. My doctor told me I didn’t have any set restrictions on activity because I would know exactly what I could and could not handle and this turned out to be true. I was convinced I could run in a few weeks. I could not, in fact, walk to the mailbox the first month without stopping to turn around halfway down the driveway after taking the step down from my front door. My body simply would not let me move that much. At the same time, exercise helps to decrease your chance of additional clotting, but do not rush this – you will know when it is time to exercise again, if even for a few minutes.
There is hope for healing and you are not alone,
Reader Writes In: How long have you been in recovery? Did you know what to expect in terms of recovery? What does your picture of recovery look like?
Share your thoughts in the comments!
Follow
It’s bin a month haven’t felt much different still pretty scared
I completely understand what it feels like to be scared. I still feel that way from time to time! I am glad you found this site and please keep in touch. Thinking of you and wishing you the best.
Hi all. I had a very extensive spine fusion surgery on April 6, 2015. As a result of the surgery, I ended up with pulmonary embolisms, most of which were pretty big in size, and cardiac arrhythmia. Mind you, I already had been diagnosed with a rare lung disease due to me being a Sept. 11th first responder. Anyway, recovery from all aspects are still very slow and rough. I do also have days when I’m feeling bad and worse. I’m going on month number 5 and there has been very minimal improvement in my overall feeling. Even though my PE’s have resolved, I am still going through the motions. I’m currently on blood thinners too. Funny thing is, that I’d never thought, at my age (37), I’d be going through this as prior to this whole situation I’ve always maintained a very active & pretty healthy lifestyle. I am now little by little getting back to the gym, as tolerated. Some of my symptoms include fatigue, shortness of breath, chest tightness, depression, anxiety to say the least. I just want to let anyone that is reading this to stay positive and determine to beat this. Anything is possible.
Eddie, I wish I could respond to each and every story on this blog. Your positive attitude is wonderful and will get you far. There are things in our lives that we can’t control but the one thing we can is our attitude about how we are going to deal with them. That doesn’t make it easy to do and there will still be things that are extremely difficult to handle and images we’ll never get out of our minds. It can strengthened us if we let it. My dealing with my mortality from almost dying of a massive PE is “making me more the person I want to be”. Thanks for your service as a 1st responder and thanks for giving encouragement to others on this blog. Cathy
I was treated just a week in a half ago for DVT and PE..im still scared…having mucus and pain walking around with a cain..yeah doctors make u think your fine at discharge!
Good morning, Reese, I’m always amazed that so many acute care doctors seem to know so little about the recovery process from PE. And, once the patient leaves the hospital the doctors do little or no follow up so how would they know! So they just give the patient the “typical” scenario which I found useless. Each patient – each person — is a unique individual with a unique situation. There is NO typical scenario. Each of us also deals with the emotions of what just happened in all sorts of ways as well. For me, being scared was really about dealing with having to face my own mortality which can be rather daunting to say the least. I have come to greatly admire how our bodies are set up to give us signals like fear to help us survive. It calls us to action to get the help we need. In that, I am grateful for the fear. In this blog you can read about how others have dealt with their fears which will help you find your own way of coping and surviving. I personally like the idea of channeling the fear into doing something positive and constructive. Sara set up this blog so we could share our fears and our stories and our solutions. It has helped so many us know that we are not alone. I wrote my case study and found many issues with Safety in Healthcare that are causing so many preventable deaths in hospitals every year and I’m trying to find ways to improve team communications by medical providers that could save lives. Maybe someone would set up a fund-raising race to promote DVT/PE awareness. That said, I’d also like to remind everyone of what the flight attendants on the airlines say to their passengers in case of an emergency: “Put the oxygen mask on yourself first so that you are able then to help others”. So be kind to yourself. Try to be patient with your recovery. Listen to your body! I wish you the very best in your recovery! Cathy
Cathy
Thank you for your comments. I was diagnosed Dec.14, 2015 with Massive Saddle PE. I had IR surgery to remove the massive clot. I am having such a rough time. Still on oxygen. Tired from the smallest chores. I am thankful to you for posting it gives me some hope!
I was diagnosed with a saddle PE a few days ago after a ride to the emergency room in an ambulance from work. I was only in the hospital for about a day and a half, but it is so weird. I feel really tired a lot, and I get winded just from moving around the house. If I am just sitting and watching TV, or I am in bed, I feel fine, but after a few minutes of being up and around, I’m out of breath and feel tired. It can be very deceiving that way.
In the hospital I was told that this wasn’t going to go away quickly that it would take weeks if not months. So, I am just starting out with recovery, but I have been lucky because I have not needed anything like an oxygen tank. My breathing is getting a little better each day, but not as quickly as I would like it to. And I want to sleep a lot. I hope that things get better and not worse.
What a story. Hope you’ll keep on getting better.
I had a PE on December 5. 2012. Hospital stay was only
3 days because I insisted on leaving due to bad room mates.
At age 77 it seems I was one of the luckier ones. I improved
slowly but not as bad as some of you people. I just saw my
cardiologist and also had a breathing test. All seems to be
fine so far. Hang in there and the best of everything to you
Thanks Cathy you have encouraged me to keep moving I’m 38 with 5year old twins living on a third floor apartment..with no help..I’m using all the strength I have and this support group will help me 🙂
This is my first time here and I’m not even sure how to respond. I had a saddle or on September 1, 2016. For me the possibility of another Dvt is obscured because I have a bulging disk causing severe pain in my buttock extending down the leg. I am blaming this for all my difficulties and not the pe. With all the comments about difficult recovery I’m not sure where the blame lies. I am 75 years old but have always been active physically and mentally. I’m told I can’t have testing for blood disorders until six months has passed.
Yea very nervous and upset my wife just got diagnosed with 2 blood clots 1 in each lung. Its scary as i sit her @ 1230 am. In her hospital in the dark listening to her sleep Praying that she works thru this and how are 12 year old daughter is going to take the news that her mom is sick. The doctors do not understand or have a good answer.So with god we start this journey into the unknown. And thanks for your site it really has helped
I haven’t had my surgury yet and I’m terrified. Do the Dr’s in San Diego give you the same live expectancies as your Dr’s at home? Is it your understanding after surgery you will have a full live ahead?
honestly when they’re hungry I’m losing with happened to me I didn’t even know it was happening and I thought it was dying but the doctors and the nurses were helping me everything that they were doing I was appreciated and they actually saved my life they said if I didn’t get to the hospital as fast as I did I probably would have been dead and they actually saved my life and I appreciate what they did and I was crying and all I could see you when I got in the ambulance with flashing lights and I thought it was going to die but thankful that they did I didn’t and they saved my life and I appreciate what they did and all I say is God bless that God was with me.
I had spinal surgery 3 days ago. Was recovering very slowly. Diagnosed with blood clot in lung. and sent to emergency room IVC. That’s a little cage they put into your neck that blocks a blood clot from traveling to brain or head. All this happened today but I’ll try too keep up this blog.
I had a three level fusion April 2015, too, and suffered massive blood clots in both lungs, heart, and both legs in two different spots. I still suffer from my neck and back injury, along with symptoms from the PEs and pain from the DVTs. How has your recovery been after these years?
Sara, thank you for this site. It’s a relief to hear about the exhaustion. I feel like I’m just not doing enough or it’s somehow my fault. I was diagnosed with a pulmonary embolism post a knee replacement surgery. I was considered young for a knee replacement (39 years old) so I really never expected any complications. In addition to the embolism, I had hospital acquired pneumonia. All I can remember is that my whole body hurt and my mind got lost in a thought as I was speaking. Also I kept dropping things from my hand because I basically would fall asleep or pass out while holding things. My sister said I was so delirious. I was taken to the hospital by ambulance two days after being released post knee replacement. I had to spend 9 days in the hospital and took Xarelto for 6 months. I had three e.r. Trips because if I fell or bumped my head on Xarelto there was the chance of internal bleeding, so I was constantly worried about any trip or small bang. I stopped Xarelto July 1st and expected I’d be able to just go back to all activities I enjoy. I was beyond thrilled but then disappointed when following any activity, I’d fall asleep as soon as I got home. I had gone back to work in march and the same thing happened, constant exhaustion and fatigue and everything was a struggle. I have been told by three doctors following my care, that I was de conditioned and now have to recondition. I was relieved to hear a medical explanation since I was so confused and frustrated by my constant exhaustion and nap taking, prior to the p,e. I was not a napper at all. I keep asking how long reconditioning takes and I’m told that I was sick for a long time and it may be more than a year before I feel relief. I’m so grateful I survived since I too was told I was lucky, but I’m constantly beating up on myself for being too lazy when i tire too easily. I get really frustrated. I didn’t get much education post hospital stay about a time frame and really didn’t process how sick I was until recently. I’m grateful to have lived through it and am working hard to recondition. I am up to being able to work out for an hour and a half at physical therapy and a few more times during the week on my own… But I still konk out right when I get home. I was able to spend the summer reconditioning but now I have to go back to work as the school year starts and I’m hoping to be able to try to continue my workouts. It’s important during recovery to stay positive and try to be patient with yourself. Also it’s a must, to listen to your body! I never understood that until this p.e. but now even if I dont plan to rest, my body automatically makes me! Maybe that’s a good thing even though I see it as sometimes inconvenient! I’ve really struggled with being patient with myself, I’m constantly thinking I’m lazy, but with all the posts on this site referring to exhaustion, I now feel relieved. Thank you. You’ve done a very good deed. Wishing you a continued successful recovery and the same for all who have posted.
N.L.
Thank you for your comments. I feel so lazy when I’m exhausted after a morning gym workout and 9.5 hours at work. I actually passed bilateral saddle clots my 1st night in Europe and we flew home 20 days later. I toured through London, France, Spain, Gilbrater, and Italy with these large clots. We flew 11 hours back to the states and I returned to work for two days before I was rushed to ER via Ambulance. I was hospitalized for 2 weeks, two days in ICU. I was able to return to work full time after being home 8 weeks after being released from the hospital. I’m a busy person and used to go to the gym 5 days a week. Now, I stumble to go three times a week and work 40 hours. After preparing supper for my family I’m so tired I can hardly lift my fork to eat. I’ll do better then go back to exhaustion again a few days later. I’m so blessed to be alive, it’s a true miracle I survived, yet I feel ungrateful when I’m angry because I get so tired. I feel like a wimp for not pushing myself more, but I just can’t. My doc told me I would be tired and it would probably take at least a year to be well — but I seem to forget it as I’m going through life. Thank you for reminding me that its a journey not a sprint.
Thank you so much for writing this. I just found out 2 days ago that I had a blood clot in my lungs and it’s very distressing. After being sent home again and again and being told that “everything is okay” they finally properly diagnosed me.
Physically I feel fine and can now breathe better with blood thinners. But I have severe head and body aches.
The emergency room doctor did not prescribe anything for pain which is confusing because they admitted me for 3 days and had nurses give me pain medicine every 4 hours, I was hurting so much.
I also notice that there seems to be pressure and confusion in my head and am not sure if it’s even related.
I am hoping the pain and head issues go away and don’t have to run back to the emergency room for the 4th time this month!
I truly appreciated this story! Thank you again!
Hi I just got out of hospital 2 days ago with a PE, and now I have had a headache for 3 days straight. How long did you have a headache and did you go back to the Dr for it?
I was encouraged to follow up with my primary care doctor when I got out of the hospital. You should do this also. Not sure what your headache could be from, but better to check it out. Make an appointment as soon as you can. I am almost 2 months out and every little thing scares me now. Spent Friday the 20th in the ER for shortness of breath. After 13 hours and a misdiagnosis of pneumonia I went home with a real diagnosis of an upper respiratory infection with some asthma complications, hence the SoB. The doctor told me never to be afraid of embarrassed to go to ER or to call the doctor. It could save your life.
~Maria
Good luck.
I had a large DVT/PE in right lung w/some scattered small ones Feb. 2016. It is now Sept. 1, 2016, and while I can do whatever I want, I have and still suffer from bouts of chest pain, shortness of breath, and severe anxiety with depression which has caused my being on several meds, along with the Eliquis for the PEs. Some days I’m great, others I just want to cry. Going to the grocery can wear me out; doing much in one day can keep me down for the next 2-3 to recover. Dr. says it’s all part of the recovery, and that hopefully at the year mark I will be able to see a marked difference. In the meantime, I don’t even understand what all I’m going through, so I know my friends can’t relate, even when I explain it. I keep thinking, “is this all in my head? Is it real or am I just imagining it?” It’s then I search for sites like this for answers – and it helps knowing others are going through the same things. It’s frustrating that some seem to be much better after only 3-4 months, but I tell myself that between my messed up immune system and my age & lifestyle (I’m 59 and just retired from teaching), I AM getting better, it’s just so slow and I’m so impatient. Those of you who are still feeling symptoms 6-7 months out & feeling severe anxiety & fatigue—is it getting better for you? How many of you are there that are feeling what I’m feeling?? It’s a lonely recovery, despite the amazing support of my wife & daughter who lift me up on a daily basis. Thanks for this forum!!
hi lois i know how u feel i had mine nov 2015 and still dont feel a 100/ every day has challenges and just had test for damage on the lungs and the heart they came back clear thank god but still feel anxious everyday upset tearful all of wot u said u are right unless u have been through this no one understand properly bc u dnt know unless u have been through it i wish u well and try to stay positive and well just dnt overdo it paula (((hugs)))
This is what Sarah sent to me and it helped. I have my surgery scheduled for October 19
Be well
https://health.ucsd.edu/specialties/cardiovascular/programs/pulmonary-vascular-disease/pte/Pages/default.aspx
Hi Lois. I went through the same thing. I was 48 at the time of my pe/dvt and teaching elementary school. It took 18 months for me to feel normal again and I did get over the anxiety. It’s now been just over two years and I feel better than I have in years. I am able to go to the gym regularly and I feel as if the pe/dvt never happened. Recovery was slooowwww! I had to rest so much and I found that I got sick very easily and often. Keep listening to your body and take care!
Thank you so much for sharing! It soooo helps to know I’m not crazy or alone. Godspeed.
Hi Lois I have had two large events . Would like to tell you for me both times all of the the symptoms you talk of I had all passed . Now I am on Warfarin for life . Its easy to deal with no real side affects for me . I do what I want when I want . I’m 61 now . Had first DVT/PE at 53 then at 58 . Hope this helps .
Hi Sara,
I had a pe November 2015 after a month of bc pills, and a hysterectomy. The hematologist said I may have lupus anticoagulant and I’m scared to no end. She will retest in March. In the meantime I am taking eliquis. Do you know of anyone with aps being treated with the new anticoagulants? I’m so worried if it’s working 🙁
Hi Christina. I am not yet a week out from my massive pe. I an home and ready to start recovery. I was started on Eliquis just 3 days ago. I’m hoping it’s working since I have a thtombophlebitis in my right arm due to the IV spot. How are you doing on it?
I was diagnosed with saddle embolus 3-13-15. I am a year into the recovery. I also have Factor 2 Mutation clotting disorder and Crohn’s Disease. I fell on the ice in January of 2015. Two months after the fall I could not breathe. I also fractured my public bone in that fall and didn’t realize it immediately. I will say God saved my life. I will also say my life has changed. I no longer work and anxiety, depression and panic attacks are a new normal for me. Even after a year, some days go great and the next day I am exhausted. I don’t think the medical community fully understands the survivor, since many don’t make it. We need to push for what we need as we only know what it takes to make it a better day. There is always fear of another clot, but we survived and prayers for all who did!
I have personally been traumatized by both my PE and hospital experience. I am 26 years old and was diagnosed with my massive PE 3 and a half weeks after delivering my first child June 6th 2016. I went into the hospital ER with shortness of breath,and chest pain. The d-dimer test showed a presence of blood clots, but the ER doctor told me since my oxygen levels were normal, it was probably just a pulled muscle from the labor process. I pretty much demanded a CT Scan which he said he could “technically” order because of the results of the D-dimer test. After a chest x-ray and ct scan, I was told I had a massive PE in my lower left lobe and my lung had partially collapsed around the PE and I was also going to be treated for pneumonia. Needless to say,I am grateful I did not accept his diagnosis of a pulled muscle(s). I now suffer with anxiety, pain,shortness of breath and fatigue. I take warfarin but don’t like it much because of troubles stabilizing my INR. I’m only able to use warfarin because it’s the only blood thinner that won’t cross into my breast milk. I never know rather to blame my recovery or being a new mother for how tired I am physically and mentally. All that I do know is I thank God every time I am blessed to see my son’s smile. It’s relieving to share with a group who understands. Stay strong
Dear Charri, I’m so glad you spoke up and didn’t accept the diagnosis of a pulled muscle! Good for you! The exhaustion from just the PE can be extreme — both physically and mentally — yet alone combining it with childbirth. Hope you have the support from family and friends to help you. Have them read this blog so they can see how real and extreme the exhaustion is and that it can take longer than most people especially those who have never experienced this type of fatigue will estimate before one feels “normal” again. So glad you have your son’s wonderful smile to focus on! Thank you for being an inspiration to all of us especially in being such a strong advocate for getting the CT Scan and not allowing the ER doctor to miss the PE diagnosis! This is a good time to remind you to make sure to do what they tell you on an airline flight: to put the oxygen mask on yourself first so that you’ll be able to be there for those who need your help. Best wishes on your recovery. Cathy
Omg, im so glad i found this site. I had dvt after taking birth controlfor only one week. To prepare for my laproscopy hysteropcopy procedure. After 1 week i had a charlie horse /shin splint in my left leg that felt abnormal, so 4 days later went to urgent care who said all i had was a muscle strain, after squeezing my leg and saying “yep no you dont have a blood clot” which was only in my mind bc of people at work putting that fear in me… Buy these crutches and stay off the leg for 10-14 days, and your fine to go back to work in recreation
Glad they did put that fear in me, another week went by days before my surgeery and im now on crutches.. Got 2nd opinion from my primary who sent me for a doppler test. Immediately rushed to er. Had Deep vein thrombosis in my leg.
While in the er… For some reason they did a ct scan and found i had 2 clots move into my lungs… Pulmonary embolism (pe)!
Admitted for 3 days, and sincee i was a fall risk commode next to my bed, didnt get up for 3 days. Then after discharged the dr said make sure you walk around. Wtf?
So bc they narrowed it down to the bc, they claim i should only be on this eliquis for 3-6 months …thank goodness for the $10 monthly card cause $360 /mo is way undoable for me.
My husband doesnt get it…
And i ended up not having shortness of breath till 5 days out of the hospital so that mixed with tightness in my chest i made my hubby take me back to the er. So he insists i am over analyzing my symptoms, since they released me and said it is normal to have shortness of breath, tigtness in my chest and possibly coughing up blood.
Omg. Im starting to freak out.
We have a 7 year old and he exhausts me.
I decided to try and go out today, tho still off work for another week at least, says my pulmonologist. With husband and kiddo to an outdoor fest… Whew.e tired as all get out….
After reading these blogs i am less likely to push myself like i thought i had to.
Realizing i will be tired, and it is ok to admit that.
I guess im trying to figure out if therer is do.s and dont.s i should know about?
Fraustrated that the urgent care dr misdiagnosed me, but very glad i am alive!
& very glad i have great friends and family who have all helped with a few meals and rides! Couldn’t do this without my parents support!
God help him, please oh please give my husband the know how to support me!
So ok… Please do.s and dont.s please?
hi sara i read yr story wiv tears in my eyes hpe yr well i was diagnosed in november 2015 wiv a massive dvt witch then broke off and went to bth lungs been put on rivaroxiban and still on it went to see the hematologist for the first time yesterday and my legs was playing up and they thought i had pts but he says too early to diagnose but all my veins hurt i know that sounds funny but thats how i describe it i wear the stocking which i hate bc they fall down or gather at the ankle and feel like knife digging in just wen i fink im getting sumwear sumthing else happen wen will it stop im so scared i just wnt to b normal again im 45 and was on narcrez b4 this bc i have fibroids he says to go bck on it as the the symptoms i have wiv the fibroids out weigh the risks wiv the pill and dvt im so confused have so much to say and trying to fit it all in just dnt know where to start hate feeling like this 🙁
Hi Paula, I’m very glad you found this site. It brought tears to my eyes too when I found it. Please be kind to yourself; you’ve been through a lot. It is confusing to understand and hard to get clear answers from medical professionals. So keep asking your questions until you get the answers you need! For many of us it takes a long time to recover but we do and what we need most during recovery is a whole lot of patience. I just had the third anniversary of my massive PE and I’m feeling pretty good but it has been a long journey. Glad you are with us and please know we care! Cathy
hi cathy thanks for the reply can u answer my question plz can my veins ache well i know it sounds silly but am aware of all the veins in my body where as usual u take no notice i guess today a bad day 🙁 just dnt feel myself since this happened just wanna feel normal again n congrats on yr 3 yr anniversary 🙂 x
Hi Paula, Yes, your veins can ache. The DVT’s can stress the veins and cause some pain and aching. In my case, I had some aching at the beginning of the recovery which became less and less frequent until it went away. Don’t think I’ve had any for a year or more. Sounds like the best thing to do is to keep the anticoagulation therapy within the recommended INR levels. The clots still in the veins take time to dissolve so the pain should lessen over time. The anticoagulation therapy prevents new clots from forming. Hope that answers your questions. Cheers! Cathy
hi cathy sorry for the long time since i heard from u my veins hurt in my arms and wrist but my dvt was in my left leg and then my lungs ? is that still normal i just feel like i can feel all my veins over my body many thanks for yr reply so nice to speak with sumone who understand also my doctor say i can go bck on narcrez which is the ‘mini pill’ or progestogen-only pill i have fiboids and they seem to help am so confused and they are not going to treat the fibroids as they said they will go during menopause so atm am sufferiing with heavy heavy periods and serve pain whats yr views thanks again paula x
Hi Paula, I’m not a medical person and cannot give you medical advice. Personally, I would not take any kind of oral contraceptive if one already has a history of dvts and pe since it definitely increases your risk of more dvt’s and another pe! And, can be the cause the dvt’s and pe in the first place! Instead I would discuss the various fibroid treatments with my doctors such as the noninvasive mri-guided focused ultrasound surgery (FUS) or perhaps laparoscopic surgery. I’d get a second opinion if my doctor still didn’t want to bother with the fibroids. Fibroids do not necessarily go away after menopause. I still have fibroids confirmed by a recent ultrasound and I’m in my sixties now and long, long past menopause. Here’s what the Mayo Clinic website says: http://www.mayoclinic.org/diseases-conditions/uterine-fibroids/basics/treatment/con-20037901 I could put up with the heavy periods and did when I was young although I might want some sort of pain management for the pain. It did take several months after my PE for the pains and aches to go away and in the first few months my entire body would feel achy especially when I woke up in the morning. I am very pain tolerant and believe drugs are prescribed far too often and mess up the body’s natural systems. So I rarely take any drugs with the exception of blood thinners since the risk of another PE would be life threatening. Non-drug solutions like meditation work well for many people for things like pain and anxiety. Let us know what you and your doctors decide to do. Discuss this with your hematologist as well since he might have more knowledge about your risk of continuing the nacrez than your regular doctor. Keep asking questions! Get the answers you need. Be kind to yourself .. and patient. Cathy
Hi Paula,
I do not know if you received my email reply to this thread – I hope you did, but maybe it went to your spam? You do have options for birth control, even after having a blood clot. You can find more information here: https://womenandbloodclots.org/birth-control/ and of course, be sure to speak with your physician about your specific circumstance.
I hope this helps,
Sara
hi cathy thanks for yr reply i spoke to my hematologist and he was the one that suggested that i go bck on narcez he said bc it was only progestogen-only that it was less risk and bc i was on rivaroxiban as well the gain from the fibroids out ways the risk ? it so confusing wen i asked him bout pain etc he answer was surprising as one of the nurse thought i had pts due to the clot of my leg so i wear the stockings which o find very uncomftable wen they roll dwn and gather at the ankle the worst feeling ever like yr legs r being strangled from the inside out and didnt really give an answer to y my veins hurt all over my body just wanna feel normal again dnt like feeling like this at all paula
Hi Paula, Yes, just read that it is the estrogen in some birth control pills that increase the risk of clots. A research paper I just read on the NIH site says that wearing compression stockings does not prevent PTS in their controlled study, but that is just one study but I think they don’t really understand why PTS happens in some people and not others. It doesn’t make sense to me to wear compression stockings if you still have dvt’s in your legs and they haven’t had time to dissolve but I’ve never asked a doctor that question. There is pain and swelling from the stress and damage to the veins at the beginning of recovery as clots dissolve and the veins heal. This is not the same as PTS. Also, sounds like your compression stockings are not fitted properly if they keep falling down … they must be custom fitted to work. For most of us life does eventually get back to “normal”. Hope that’s sooner than later for you! Cathy
My first time to this site. I had surgery to remove ovary on 1/28, then a DVT on 2/9, then a PE on 2/18. Had to quit my birth control pills, which upset as much as the clots! They made me “normal” with my moods and I had quit periods, which were very bad with bleeding and PMS. My leg feels stronger but fatigues easily. I keep having chest pain, which scares me and I even went to ER a couple weeks ago. PE was small, was only in hospital one night, just chest pain, no breathing issues. Was in ER last week with leg pain (I’m a mental mess!) and my D dimer was 109, which reassured me. I take xarelto. I am stressed and tired and wondering when I’ll feel better and stop flipping out over every pain. I am 47 and have 2 little boys, ages 7 & 10. It is hard to keep up with them, cook, do laundry, etc. Trying to walk 30 min a day but some days it is hard.
Thank you for posting. I’m totally paranoid with any aches and pains. Appreciate your post.
Hi Christina and Sara I was diagnosed with PE in February 2016-im 61 yes and I tell you I have been so scared with severe anxiety and panic–I’m on warfarin and will be going to my dr tomorrow –I’ve
Been in tears–I am so glad I found this site—I really don’t know what to expect—I’ve
Been so worried as well because I don’t know what my levels are or if warfarin is working–any suggestions? I’m also on Xanax because of my anxiety
Thank you
Heidi
I had multiple large PEs in November 2015. Some days, I feel good. Other days…wow. I’m out of breath, my memory is shot, I have problems finding words. I lost my job due to this crap. Like Sara, I was active. I was a purple belt in taekwondo, I exercise, I skate/hockey, I was doing the Insanity and other HIIT programs. My PE didn’t have a trigger. The only thing that can be determined is either a case of pneumonia brought it on or a much more sedentary job. Last night, I felt a clot in my leg. I couldn’t sleep. My breathing was labored. As many times as I’ve been through this, I’m still terrified. My clots have only decreased about 1mm thus far. I’m not on oxygen and I’m doing the xarelto. Being sedentary caused it, but if I do too much, I pay for it with the clots moving. I won’t even go into what xarelto did to my menstrual cycle. Does it get better?
Hi Jessica! I had multiple PEs in December 2015, and I am also on Xarelto. I too have had some side effects from it, including issues with my menstrual cycle. That said, I also have endometriosis, and since I can no longer be on hormonal birth control because of the blood clots, I think that is also a mitigating factor. I have also been experiencing issues since on the Xarelto that include a lot of pain in my arms and legs particularly in my shoulders. I’m wondering if anyone else on Xarelto has had this same experience? I have an appointment with my doctor on Monday, and am planning to discuss possibly changing blood thinners. From the research I have done, there are quite a few documented cases where Xarelto has had this effect on people. Like you, I do still have the occasional chest and or lung pain. I’m told that can last for over a year, so I don’t look for it to go completely away to anytime soon. I would love to get back to my kickboxing class, but I’ve not yet been given clearance to do so. As you said, it’s something you have to take day by day. Like you, I have days where I feel perfectly fine, and days where I feel really bad. And I don’t know how much can really be done about that beyond giving it the time it takes to heal. Best of luck in your journey, and I hope that you have some improvement soon 🙂
Candace – I was on Xarlto for about 3-weeks after my massive Saddle PE, which required a thrombectomy. My whole DVT, PE were very weird. Basically, no symptoms until it was almost to late. Anyways, Xarlto did not work for me. My clot (DVT) actually was getting larger while on the medication. Basically, I was not “therapeutic.” They immediately took me of the Xarlto and put me on Lovenox to bridge to Coumadin. I was the second person the doctors saw that day – where Xarlto failed. I like being on the Coumadin. I know it’s working. My only complaint is that I am so cold now.
Hi Sara,
thanks for sharing your story. I was just diagnosed with P.E., but w/a faster recovery time I think, because mine was found out within a few days of its apperance I guess. I was really worried because I’ve been feeling so drained and tired. I was thinking of pushing myself back to work, but I think I will take a couple to three weeks off before returning after reading this. I need to be able to at least doing activities all day without being ready to pass out. Reading this article made me feel normal in what I am going through though. Thank you
I thought I was ready to go completely nuts until I read your blog. For me it’s going on 2 years. Before this I was in the gym almost ready to do the Mud Run. And because I had been a CNA for some time, I wanted to challenge the Board for my Nursing License. Because I wanted to work in the field hospitals overseas. Now I can only walk so far in a grocery store, and my Doctors look at me as if they’re clueless. Thank God for you.
I have pulmonary embolism. But dear three month i am not set
I too was just diagnosed with multiple pe in upper and lower lobe of the right lung on Nov 6th 2017 , i have had a dvt in 2012 aswell…this time is totally different and i always feel so exhusted a single mom takin out of work i feel frustrated and scared sad because my specialist put me on a blood two different blood thinner both to which i ended up being allergic too so now since nov 15 ive been on 18000 icu shots a day and 10 mg of warfarin a day …amd of course the medician that is supose to make me better my body rejects and my blood doesnt absorb the warfarin like a normal person would …needless to say my inr is gone from .9 too 1.4 back too 1.2 all with taking fragmin shots and an oral blood thinner …i try and stay positive but too be honest its kicking my butt …and now too top it all off i have a chest cold tis the season , and they cant give me medician for the cold because in turn it will mess up my inr even more , my dvt took over a yr of treatment for one small clot i can only imagine what recovery will be for this time around , but i have way to much to live for so trying my hardest to look at the positive side of everything like im still alive i have beautiful children and family who need me around ….im so glad i found this blog its made me realise that im not alone in this long journey im about to take .. god bless every single one of you and thanks for sharing your recovery and experience xox
My husband had PE in April and a second one in July which caused heart damage. Still know answers of why he had PE in the first place. Still dealing with back/chest pain and major fatigue. Doctors don’t seem to know how to tell you about recovery. We have found most of our answers from others like you and our own research. We have good days and bad days. He will work a few days or weeks then off because he can’t put one foot in front of the other. There is not a lot of follow up with doctors, just told to seek medical help if any symptoms return that are
worrisome.
Thanks for sharing your story it helps explain what we are dealing with.
Hey I’m Kayla I found out I had a PE blood clot about 1 month ago. I went into the ER by ambulance because I couldn’t breathe. I thought I either had pneumonia or asthma but after a CT scan they found a large clot in my left lung and a small one in my right lung. It’s been hard recovery for me. One day I’ll feel really great and the next day horrible. I have anxiety a little about it but I can definitely tell i’m getting better day by day.
About 32 years ago I had my first PE and DVT. I knew it would happen to me because of a conversation I had with my grandfather about our family history and who had clots. I was curious and learned a lot about living with the clots . He called it the phlebitis. Didn’t know what caused the clots though. 1996 I got a diagnosis of Protein S deficiency. Over six generations of this Confirmed and I’m number 5. Late 2019 Confirmation of Two mutations and two other variants. PROS1 and factor V. I’ve had multiple DVTs and PEs. They do cause damage to your body every time. Now it’s living with the chronic side effects. I’m 51 and have been on Xarelto for 7 years. Before that it was Coumadin and the doctor. I’m better on Xarelto. I could go on sorry. Too many experiences with this. Life goes on but not the same as it was. There is that sense of fear that it will strike again. It will the Dr. and then we can up the dose. Good thing he was at my hematologist or Dr..
Hi Sara
Was very difficult to find information on the healing of this.I am three and a half months post embolism and going through a lot of things that you mentioned.Days where you have very low energy.I am on the blood thinners and see my specialist in June again.Also have the prescription to start wearing the compression socks!I was diagnosed with a saddle embolism in both lungs and like you said as many as one in three diue from this.I feel very blessed to be able to recover and thank you for your information.By the way I am 57 years old and am a former professional hockey player.
It is going to take a long time to feel really well. Knowing that should help. Listen to your body and be your own doctor.
I hiked, biked , burst trained and weight lifted. I had a parasitic infection, which I think triggered the first DVT. The 2nd DVT I got about a year later after having vein ablation. (The doctor forgot to advise me to wear compression stockings.) The last DVT resulted in a bilateral, multi- clot P.E, too many to count. I started wearing the highest compression stockings as soon as I recovered from sitting all day with legs elevated for 2 weeks. I started singing to help with breath. I took deep breaths, and held them. I napped a lot. I could not do any of the activities I used to do.
I am on Coumadin, but am planning on getting off. I feel really great, one year out, but still get a little tired. Not bad. I am doing the elliptical every day for burst training. I get my heart rate up to 150 and bring it down to the low 90’s before I repeat. ( A couple of years ago, I got my heart rate up to 164. I will aim for that gradually) I have started strength training and working out on a pilates machine. I take supplements that help with inflammation and blood thinning. I take a daily infrared sauna and use a grounding pad, which helps thin the blood. I have some edema in the ankles when working at my desk or sitting for long periods of time. I am going to have an ultrasound tomorrow to see about venous insufficiency. Depending on the outcome from that, I will go off Coumadin. My new MD, ND said no doctor would tell me to get off Coumadin, but that I am already doing everything to thin my blood naturally. He said, “hint”, “hint”.
I also wear compression stockings – the strongest kind, whenever I fly. I will always continue to do that even when I am off Coumadin. It just applies another layer of insurance. By the way, I am almost 72 years old and still kickn’.
Every one get checked for blood clotting disorders. I am a on Coumadin for life and almost died 3 years ago due to multiple pulmonary emboli in my lungs. So many the cardiologist could not even begin to count. My symptoms of these disorders are very difficult and I have no energy most of time not to mention I am in my early thirties! Swollen feet and legs and lots of memory difficulties. But God is our HEALER and that’s who we trust! Take care all and get checked if you haven’t already!
Hi! In December 2012 I suffered a massive bilateral pulmonary embolism with cardiopulmonary resuscitation. Like Sara, I was truly lucky to be alive. After a stay in the hospital (where I had a vena cava filter installed), weeks of home health care monitoring, countless medical appointments, lots of new doctors, and blood thinners for over a year, I feel better. It is now 3 years beyond my “survival” day. My lasting results: I am banished from cortisone/steriods for life, I take an aspirin daily, and I use an inhaler before I exercise so I can breathe effectively. I still have annual appointments with a pulmonary doc, cardiologist to keep watch on scar damage in my heart and my vascular doc.
Like Sara I was shocked at all recovery takes. My docs were very up front on what to expect, but still, it is hard to believe. When you break a bone you have pain you can understand. When you have a DVT & PE, there is pain, but you don’t feel broken. That’s the best way I can explain it.
“When you break a bone you have pain you can understand. When you have a DVT & PE, there is pain, but you don’t feel broken.” — that is truly the best description I’ve heard yet. It’s so hard to explain, and I can’t really fault people for not understanding when I don’t really even understand. Thank you for giving me a way to explain this that ‘may’ Mae sense to others.
I was diagnosed with bilateral pulmonary embolisms on Nov19,2015.Drs say Pretty Massive. I had been having symptoms SOB all week but just thought it was due to me being an Obese 47 yo AA Female. I was Hospitalized for 10 days(2 in MICU).I have a 40hr a week job which as of today I still have not returned to. I have my goid days and my challenging days. My job is a demanding and sometimes stressful. I am now feeling guilty for not being released to return to work. Because somedays I feel like I should be @ working especially when you are hearing from your co-workers how overworked and overwhelmed they are and how they are unable to take off or take care of their family due to the high demand of the job. I wonder will I ever feel like myself again. I get so sad sometimes because taking a shower is sometimes a challenge. I am so Thankful that God Spared My Life. But why the guilt? The sadness, the feeling that people may think she should be better by now,Is my fatigue,SOB, all in my mind or as someone else mentioned FEAR? I want so much to be better and yes I am better but its been almost 3 months. Im afraid I may lose my job. I feel my coworkers and supervisor may think im not being honest about how terrible I feel somedays.So now I dont express when I dont feel well or when Ive had an experience that i could barely catch my breath or had to periodically sit dow just to complete a simple task like cleaning my kitchen or doing laundry. Somedays I just Cry because Im filled w/ sadness and dont really know why. I could go on and on about my feelings and how this experience has affected my Life. I Thank God I was not one of the UNLUCKY BUT ONE THAT GOD PLACED HIS HAND ON ME AND DECIDED HE HAD ANOTHER PLAN FOR ME!! Thanks for allowing me the opportunity to SPEAK MY MIND
Good morning, Carmen, People do not understand what you are going through and what the fatique is like or the fears and frustrations of not feeling like you are getting better. A massive PE means there was also a lot of strain on your heart. Your body .. and mind.. have been something few others can even imagine. Three months is only the start of your recovery and it can take a long long time to feel “normal”. But, for most of us that day does happen but can be a long time coming. The fatique is like nothing I’d ever experience before. It isn’t the kind of fatique you can just push through if you try hard enough which is what others seem to expect you to do. My body would simply me tell me you can lie down on the floor right now or maybe I’ll let you get to your bed. There was simply no gas left in the car! The other thing is that I think you’ll find you do not manage stress as well at least for quite a while. A stressful, demanding job is going to be extremely difficult for you to cope with while you’re recovering which could be a year or two or more. Yes, I said years… Many people said when they heard I almost died that God isn’t done with you yet. It may be God has a new direction for you now and it is time to listen and figure out what it is. I found dealing with my own mortality has made me be more the person I want to be. I ask everyone what their dream is and encourage them to go for it. What’s your dream, Carmen?
Carmen, please be kind to yourself. You deserve it! The PE doesn’t leave visible scars so it is hard for others to see how much your body has gone through. That’s why this blog that Sara started is so wonderful because we do know what you are going through and care! Cathy
Hi Ms Cathy L. Thank you for your kind words and helpful insight into this new challenge and the side effects that I face daily. I am currently still at home. However, I have started working a 4hr modified schedule from home. I have been exhausted each day after I complete my 4hrs(scary) I feel like my work place will expect me to return to work after my drs appt next week…Im in a Supervisor position and my team is breaking down due to being overworked/overwhelmed since my abscence and I feel an enormous since if guilt because of it. I believe if I dont return to work soon. I will be looked upon as “MILKING/FAKING” I am still having episodes of FATIGUE,SOB, and just not feeling well. Ive started driving my daughter to school again but it seems afterwards Im so tired. I want so bad to be okay to get back to my “NORMAL ROUTINE” I have an appt. w/ a Pulmonary Dr on next week. I’m curious to see what his opinion will be and will he/she think that I should have returned to work by now. What you said about looking fine on the outside and what people think is so true. I hear it all the time “well you sound better,stronger” makes me not want to talk to anyone from my workplace. The other morning after I dropped my daughter @ school.I decided to go to Dollar General a store near my home for cold medicine. I was checking out and looked up and I saw a co’worker coming thru the door a sense of panic came over me because I didnt want her to see me and go back and tell everyone “I saw Carmen @the store she doesnt look sick…why isnt she back @ work”? I almost ran out of the store and couldnt drive out of the parking lot fast enough.Just Crazy! I guess I have these feelings because some days I feel really good and I think well yes Its time for me to go back to work and maybe that will be Final Step in my Journey to” Normal” make sense? I so appreciate Ms Sara for having this Blog as an outlet for me and others to share our innermost feelings of fear,resentment,sadness,lonliness and guilt. Thank You Ms Cathy L Again for taking the time to read my comment and respond it truly helped me to know all what Im experiencing is not just in my head but its REAL! I sometimes Think MAYBE IM SCARED TO RETURN TO WORK because I think I may get sick again and Maybe this time God Wont Spare My Lifeand My Family will have to go on without me.Idk. My Grandmother use to say
” An Idle mind is the Devil’s Workshop” I try and not think negative but it just gets difficult sometimes….but I will keep Striving to get better and do better. Take Care
Good morning, Carmen, Sounds like you love your job and your concern for the people that work under your supervision shows you are a very good and caring supervisor. While I understand the fear you have that going back to work and the fatigue will trigger another PE, it is very unlikely to happen if you remain on the blood thinners and keep the INR at the recommended levels. At least that is one fear you can put aside! I was a manager for many, many years at a very fine company. I think I might recommend that you actually talk openly with your team about the fatigue you are experiencing and how the trauma and damage is not readily apparent to people. Ask for their patience and support as the recovery is going to be a very slow, long process. Tell them that you are going to give them all you have to give but right now that is limited. And, although it will slowly improve you probably won’t be back to normal energy levels for a year or more. A car can look great on the outside but still not run very well because of internal problems. While you can’t control what others think other than to try to help them understand, you can choose how you react to the situation. You know it isn’t in your head; you know it is real; you know it is going to be exhausting and difficult to go back to work. The job stress may make you experience what I call PE brain fog where you can’t bring up words quickly or your mind just goes blank. Be kind to yourself if that happens. But, you are going to get better and one day you will feel normal and that day you’ll go “Wow, I feel normal! Isn’t this wonderful!” Spend a bit of time each day thinking about three things you are grateful for that day — perhaps a kind word from someone you work with, perhaps celebrating the little ways in which your daughter is growing up, perhaps having time for a nap, perhaps a small act of kindness you gave as a gift to someone else. Let us know how you are doing from time to time! We do care and are grateful that you have found this blog and that Sara has set it up to be so supportive. Cathy
Hi Carmen. Your story is my story. I’m 58 but other than that my SOB I attributed to being an out of shape AA female. Felt poorly for months but brushed it off, too many things to do, work…etc. Saddle pulmonary embolism in February. 10 days in hosp. Came home super weak. Mad because I couldn’t do things that I had been doing previously. Now I have an understanding of what is going on with me. I appreciate you sharing. I’m changing careers. Had a very sedentary stressful job 1.5 hours drive away. Gonna find something else now. Again thank you for your story. God keeps on blessing you!
Hi Carmen, how do u feel now? I was diagnosed with bilateral multiple PE in March 2017 when I was 9 weeks pregnant. Now I’m completely off from anticoagulant for a week. I’m not allowed to rest more than half an hour or to b in bed more than 8 hours which is frustrating me very badly. I still have chest pain and SOB on and off. Still very scared. I’m a person who would like to have extra rest whenever possible with a 2 months old little girl. Just wondering whether we can b completely normal after a while? Please reply if anyone has same condition or known someone with same condition.
I haven’t had my surgury yet and I’m terrified. Do the Dr’s in San Diego give you the same live expectancies as your Dr’s at home? Is it your understanding after surgery you will have a full live ahead?
Patrice, what surgery are you having? IVC filter? Pulmonary Thromboendarterectomy? Are you going to San Diego for the surgery?
If you are having the thromboendarterectomy, I know the San Diego doctors are the best in the world.
We can certainly give you moral support and hopefully answer some of your questions although it is the doctors that need to answer the specific medical questions you have for your situation. Cathy
I was diagnosed with a PE 10 weeks ago, I have ups and downs. I had a CT scan last week the findings show no embolus in my lungs but a segment of the central artery was opacified
Sombody can help me on what this means, please?
Thank you and the best for you in recovery
Manny
Thanks for this info Sara!
I am a 71 yrs old man, a few months short of being 72. I suffered a second DVT/PE in October of 2016. July of 2011 I had the first one. Recover was much better that time, I was 66 yrs old and no health issues ever before. I was back a work in no time. I work in healthcare 3 nights on and 4 days off. The 2016 event was very different. Six months later I still have not recovered. I was just out trying to do some yard work and I had to come inside and rest. Your testimony mirrored my experience almost exactly. Nobody (Doctors) tells you the full story. You have helped me so much. I am still working my healthcare job. And at my age I realize how healthy and fortunate I am…still it’s a difficult recovery. I hope this response to your post will help others. I am on blood thinners for life and I have a IVC Filter as well.
Sara thank you for writing this it has been a year and I still feel bad I have good days and bad days the good days I take advantage of and I can’t hardly move the next couple of days I am sick all the time sometimes I wish I just would have died my chest hurts alot but you are right they give you a pill for the rest of your life and send you on your way sometimes I just am to tired to fight anymore
I am a physician who treats pulmonary emboli and created a pulmonary artery response team at a major University Hospital. I was the first patient with a sub massive PE that was supposed to kill me. I have underlying cancer and one of th medicines predisposes to blood clots. I was lucky and recovered. I was ignorant to the sequela that followed but have since learned a lot. My advice is that it is not only what you do following the blood clots but what you do before. If you exercise and maintain a good heart the stress from the clots and follow up of the clots will not be as devastating. Plus exercise will help prevent these from occurring. Afterwards build up slowly but continue to exercise to improve strength and oxygenation. Just my 2 cents
I have found this ALL to be true- now more so in retrospect; months to almost a year after the first occurrence. As a matter of fact, what I had attributed to a brain tumor excision, for a large part, the symptoms were that of embolism- as opposed to any deficits derived from the brain tumor.
It’s only been about 10 days since I was diagnosed in the ER with multiple bilateral pulmonary emboli. I am home from the hospital and even going to work for 2-3 hours a day. I am on the relatively new blood thinner, Xarelto. I still have arrhythmia, so I have a cardiac monitor for 30 days. I still have some shortness of breath and I never feel like my lungs are filling up completely with air. But more than anything else, I am TIRED. I don’t think I’ve ever experienced fatigue like this. I was exercising a lot before the PE, doing a spinning class, a weight lifting class, and riding my bike a lot. Now, “exercise” is just making it upstairs to my bedroom to lie down! I want to know how long this fatigue will last, but I know everybody’s different. I wish I had a crystal ball so I could see my recovery in the future and have that in my mind to keep me going right now. There is very little info on the web about what it’s like to recover from a PE. So thank you for making this site!
Wow, Kathleen. I am so glad you took the time to share you story – I think it is a true testament to the fact that we are all different and all heal in different ways and in different amounts of time. That is so important too, or we might start basing our recovery on others and feel like there is something “wrong with us” if we don’t see the progress we think we should. From what I have experienced, heard and read the fatigue is the thing that takes the longest to diminish. Per my doctors (and others that I have read), it is because our bodies are still healing internally and at vascular/cellular levels that we may start feeling better, but we in fact are still healing everyday. This makes us more than just tired – it is pure fatigue. I can totally relate to you. I was running ALL THE TIME before my PE and now, I just can’t. For example, I ran-walked four miles this morning and came back and took a three hour nap. It took me about a year to be able to get out and exercise again. To this day, I still get winded or tired walking up the stairs or walking around the mall. It is SO hard. I know how you feel. Thank you for stopping by because through hearing from others such as yourself, I am also reminded that I am not alone. Keep healing, because you are no matter how small the steps may be. You are healing. Wishing you the best.
My DVT/PE was last Nov. The last 2 Saturdays I took a 3 mile walk and I too slept for hours. The first time it took me to Thursday to recover. I dont feel like i have recovered from last Saturday’s walk. This Sat. I am staying in and. Not walking. It is hard as i live in bottom of the Grand Canyon and i love to go to the waterfalls.
Hi Karen! I am glad to hear you got out and took a walk. I remember the time I went for a run/walk (after about a year into my recovery) and I was exhausted (more so than usual) for about a week it seemed like! I understand that fatigue, but I found not many people around me in my personal life could comprehend it. I am glad to hear you were able to get out – it is so beautiful where you are!! And I want to come back there. 😉 I hope you were able to rest this weekend and can maybe get out again as you feel up to it. It’s nice to hear from you and take care!
Sara, I had brain surgery in 2002 for a meningioma and developed a pe in the hospital. No one ever explained to me what the recovery would entail. No one mentioned fatigue or any other symptoms I might expect. I do have diminished lung capacity & am unable to finish a sentence with a full breath. I have never been an energetic person but I do tire easily still after all these years. I too have been on Coumadin ever since the pe. I tried to go off of it under doctor’s care, but within one month I developed four dvts in my left leg & had to have shots & back on Coumadin. I was grateful they had placed a vena cava filter in the hospital. During my hospital stay, I was in hospital for 30 days & in icu for 24 days. I wish I had been given more information by my physicians. I appreciate your blog on your journey.
Hi Sara. Two weeks after complete knee replacement I developed DVT/PE. I have been out of the hospital 5 days. No one told me that I would be experiencing such fatigue and weakness. Glad I found your site. I started physical therapy again today and it exhausted me for the rest of the day. I am determined to have a good recovery from the knee surgery but I think it’s going to take much longer now
I had a saddle PE in Oct. i have had the same experience with taking walks. I feel good while I am walking but it takes days to recover from it. Also, I have gotten bronchitis 3 times this winter already, I am so ready to be completely healthy. I had 3 ER visits since leaving the hospital because of chest pain and shortness of breath. I am not someone who ever thought this would happen to me. I also here from every doctor/nurse/healthcare that they dont know how I walked into the ER, I should never have survived. I do consider myself blessed that I survived, but sometimes the thought of I could have or should have died puts me in such a depression. Thankfuly it doesnt last long, but I rwally thought by now I would be doing 5k races and enjoying long days out, but I still get tired after a full day and usually need to rake the next day to rest. The doctors definitely didnt tell me about how long this recovery was going to take.
Hi Sharon and welcome! It sounds like you and I have a lot in common as well as so many people here. I did not expect this to ever happen to me (I was running and coaching half marathons at the time) and similar to what you said, it is a miracle I even made it to the ER alive. I thought I pulled a calf muscle and thought nothing else of it for nearly two days. I am glad you are here too to share your story! Thank you!
I would agree with you that this can be a very long recovery period and it is not one that is explained properly – if at all! – by doctors. I think what you describe in your recovery is very normal and I know for sure it is something I have experienced, especially in the beginning. It was a very long time (almost a year) before I ran a significant distance and even then, it took me out for several days as you described. I have yet to get back into running because so much has changed for me and my body.
I am really glad to connect with another runner! I hope you continue on your road to recovery and please stop back and let me know how it is going for you. So glad to have you here!
I can relate too. I was used to regular 5k runs about 4 days a week and the occasional 5 mile run. Now I’m working on walking 3-4km here and there and slowly back on the weights as well.
My husband had an emergency pacemaker in aug…he came home
In great pain..back to hospital… Dr had nicked his heart..fluid on heart.. Home again after 10 days…p.T. Told him bead rest..4 days later.. Blood clot in leg and lung.. 10 more days in hospital…a week in rehab..now home.. Walking 15-20 minutes… But very scared…anxious.. Depressed….tired… Weak…heaviness in head comes and goes…3 ent drs could not find anything wrong.. Possibly anxiety… Every time he feels pain in rib or chest.. Nervous… Glad to read your reports and know that he is normal.. Thank you sara
Hi, Sara. Thanks for sharing you story! I am 58 years old when and for orthoscopic surgery on my left knee for a meniscus tear three days later it felt like I had a Charlie horse in the back of my calf I called over to the doctors office and they told me to go to the emergency room right away it may be a blood clot so that is what I did the DVT that was in my leg was no longer there they check my lungs I had for blood clots in my lungs they had me in ICU for one day given me heparin the next day sent me home with Ella que that was in my leg was no longer there they check my lungs I had for blood clots in my lungs they had me in ICU for one day given me heparin the next day sent me home with Eliquis 5 mg twice a day! I have been on Eliquis for four months ! Went to a hematologist about a month ago he says I can come off in March which would be six months with no prior test to see if these clots are gone ! To say the least it’s very scary to come off of them , The end of March I have to go for blood test to check for hereditary factor V and I recently started working again three weeks ago it’s a sitdown job and I’m so afraid when I come off the blood thinner’s sitting down for 8 to 10 hours will I get a blood clot again I guess as a survival of PE we always have fears that the not normal person without PE would not understand . I noticed when I’m sitting at work by the end of my shift I have a lot of swelling in my ankle ! When I speak to my doctors they don’t seem very concerned which is annoying since it was such a minor surgery we are not sure that the blood clot came from having the surgery but I never had any problems before the surgery ! So I just wanted to share my story with everyone if it can help anyone then I’ve done my job today ! I also have the anxiety and the depression and of course the fear of coming off The blood thinners that this will not happen again without the doctors checking to see if the clots are definitely gone ! All I hear it isn’t standard practice to recheck you which is unbelievable to
I would love to hear your feedback and support and God bless everyone on their success and thank you for taking the time to read this
Brenda
Hi Brenda – I am 44 and on 12/02/2016 I had an arthroscopic surgery on my right knee on both of my meniscus. I did some physical therapy for about a month and half before returning to soccer. When I did return on 1.22.17 I had a very intense and excruciating pain right behind my knee. Shortly after that, on 1.25.2017, I felt a sharp stab on my back and it slowly moved to my chest. I was taken to the hospital and diagnosed with a PE with infarction due to a mid size clot and tens of very small ones. I was lucky to have the symptoms otherwise Dr’s thought I would have not make it. I was hospitalized 4 days and I am with Xarelto for 6 months. The recovery has been quite difficult because i felt extremely tired all the time and suffered from shortness of breath every time I left my house. Fortunately, this last week of Feb 2017 I resumed my daily activities including commuting to work and exercising once or twice a week (no soccer though). I guess at this point my fear is whether or not I will need to be on blood thinner for the rest of my life (have yet to meet the hematologist). However, after reading so many stories I like to encourage all of you and primarily Sarah and others who were so close from dying and are still having such a hard time during their recoveries. My best wishes to all of you and from the deepest of my heart. Pablo
BTW Brenda, we feel the same way. If i am taken away from blood thinner, I think i will live with constant fear of developing a clot again. Mainly because our surgery was not invasive. And just like you, i never had DVT or PE before.
Hi Kathleen, my story is a little like yours. It’s going on 2 weeks since I was diagnosed. I had called my dr because I was coughing up blood but since the blood was in my sputum the office gave an appointment weeks away. I said ok you guys are the professionals. Within the week it hurt to breathe, I couldn’t lye in my bed, I was sleeping in a recliner. I called the Drs office again and got an emergency appointment with an available Dr. X-rays showed I had plural effusion in my right lower lung, Dr described as “pretty big effusion” and ordered a chest CT. I received a call from the Dr. 30 minutes after the CT telling me to get right down to the clinic that I had several pulmonary emboli. Scared to death, like most of you I had been a very healthy, proactive person. Then I had surgery. I too have been on Xeralto and I already feel better, I can walk across the house without getting short of breathe, capable of doing chores with frequent breaks. Still sleeping in the recliner though, one step at a time. By the Grace of God we are all here to share our stories. Thank you Sara for starting the blog.
My story is I start getting out of breath walking to the mailbox and back. I found it hard riding my bicycle even a block.
I had been in active doing Pilates three times a week and walking for about 1 mile every day. My husband and I went to Disney World in September with our son and his family. I could not walk from where they drop you off to the beginning of the park. At 62 I felt that I did not need a scooter to go around Disney World. I had walked the parks every year for the past 20 years. However, the only way I was going to be able to function there was on the scooter. I had earlier this year been diagnosed with cardiomyopathy, That’s what I thought the not being able to breath came from.
I went deaf in my left ear and Had vertigo for the first time. Now this whole breathing thing! In December I was diagnosed with congestive heart failure. January brought on pneumonia that I was in the emergency room with. I was admitted to the hospital on January 17 of 2016. After it was establish I had pneumonia there was something else going on I was sent down for a lung scan. I was in the hospital for a week and a half on heparin and started me on warfarin. After being in the hospital a week and a half I was sent home with home health care for about six weeks. I was on medicine to try to get rid of the clots in my lungs. This experiment lasted three months. It did not work. I went to the pulmonologist who informed me I would need surgery. I thought that it was something that was done arthroscopically. Little did I know I would be on bypass surgery cooling my body down to 13° iand putting it into a state of almost being dead. They have 20 minutes to get the clots out before there’s brain damage.
They told me that if I did not have the surgery I would have 1 to 2 years to live if I had the surgery I would have 3 to 4. They said all people are different and their predictions could be more or less. I’m just wondering if anyone else had a similar diagnosis from their doctor and if they had to undergo this type of surgery? I wondered how they recovered from it and if the doctors that they actually had this surgery gave them a different prognosis. I don’t feel like if there’s anything the matter with me except if I walk around. Im not exhausted or have to take naps. I’m just scared and confused and I do get depressed because of the thought that I would be leaving my children and grandchildren.
I don’t feel sick or than I am on the verge of dying.
Does or has anybody had any experience such as this. And what was your experience?
Hi Patrice, Have you had a V/Q scan? And an echocardiogram? I was very concerned about whether I would develop CTEPH – Chronic Thromboembalotic Pulmonary Hypertension. Residual clots in the lungs that don’t dissolve can become scarlike/fibrous (not sure how they describe it) and the passage for the blood within the pulmonary arteries becomes smaller and smaller causing pulmonary hypertension. My understanding is if diagnosed with CTEPH you should go to San Diego where they will do V/Q scans and other tests to see where the clots/scars are and whether you are a candidate for the surgery. These doctors do about 60% of all pulmonary thromboendarterectomy’s done in the world. They are experts at this surgery and have very good success rates and many instances of total recovery from pulmonary hypertension and back to a full life expectancy. Yes, it is very serious surgery but they know what they are doing! Here is the website: https://health.ucsd.edu/specialties/cardiovascular/programs/pulmonary-vascular-disease/pte/Pages/default.aspx Fortunately my pulmonologist has assured me I do not have CTEPH, but if I did he would definitely send me to San Diego for further evaluation. Hope this helps. Please keep us updated on how you are doing. Cathy
I had 3 PE’s caused by the birth control Nuvoring. That was just over 5 yrs ago, and other than having to tell Dr’s and ER’s that it happened, I am “recovered”. I was on blood thinners for 6 months, and I am supposed to have repeat CT scans. I guess I got lucky that I have no lingering damage.
Considering I have a history of fatigue that dates back to 1987, I feel blessed to be in the shape I am in. For all of you that are newly diagnosed, I think you should follow the Dr’s instructions. Don’t try to do anything too fast or too soon.
Thank you for sharing. I think your story is testament to things can and DO get better and can give us all some hope. I hope you continue to be well and thank you for stopping by. And your advice hits the nail on the head – we should all take care of ourselves and listen to the medical advice we have been given.
I was sitting here n reading all of the stories. I dont feel that alone anymore. Ive been through alot. I had my first PE when i was 21 yrs old, my second at 36( Nov 2013), third at 38 ( April 2014). After the PE in Nov 2013 i was put on bloodthinners for life so i thought id be good. It took a little longer to recover from my second one since i had a very large one in my left long n medium size in my right it was the worst pain i have ever felt. I did start to feel better after about 6 or 7 month i was back to my daily routines basically but not 100 percent cause it takes time. I thought because i was on bloodthinners i was good but in April 2014 got another one. A couple words of advice: 1. If your INR levels fall below your target rage make sure to get them checked weekly until they are level again. (Maybe even take Lovenox until they are back to target rage just to be safe). From what was told when you have a PE there maybe be at a chance of another one up to 2yrs, not sure how true that is but thought i put that out there. So definetly keep a good INR.
2. Trust your gut, If you feel any of the same feelings you felt dont dismiss them! GO Get checked out! Dont worry about false alarms. Be safe then sorry! If i didnt listen to my gut this time i may not be writing this.
3. Be aware of your limitations. Dont push yourself to hard to be ” Back to normal” . Be thankful to just be here!
4. Live, Love,Thrive the life you have been given!
Hi Kelly. Thank you so much for this advice! I will gladly share it with the community. Take care and thank you for sharing your story too. Welcome.
I wonder how at risk I am for more after getting one from surgery and cancer. the cancer is gone, it was in my thyroid. doc assures me that since cancer is gone its unlikely i will get another one.
anyone have any experience with this?
Thanks for sharing, Mombare. I’m about 3 weeks out from having multiple PEs due to NuvaRing as well. Im 35 & no other risk factors. I’ve been fortunate that I’ve done pretty well by most people’s standards, I’ve been able to go back to work almost immediately etc. that said, I do still have pain occasionally (today is a bad pain day) & the fatigue is like nothing I’ve ever experienced. I’ve always been an active person, & not being able to workout has been really hard for me (ironic, since I didn’t think I’d ever miss it so much). Just tonight I came to the realization I’m nowhere close to ready to go back to my kickboxing class. The hardest part for me at this point is feeling like I’ve tried to give my body lots of rest & I’ve tried to listen to it, but I’d be lying if I said I wasn’t frustrated and disappointed in myself for not being able to go back. I know that’s irrational, but it’s how I feel. I’ve always been very independent, & so I find myself depressed that I need help for small things now… I find myself feeling anxious about every little pain or issue. I feel like “this isn’t me. This isn’t my life! I want MY life back.”
The most frustrating part of all of this is understanding how much I need to listen to my body, but hating what it’s telling me.
Thank you also to Sara for creating this site; it’s disturbing how hard it is to find solid, first-hand experiences of PE recovery. It’s really helpful to read everyone’s stories and not feel so isolated.
Thanks you all for sharing your stories. I was diagnosed with saddle PE on March 17th 2016.I was having periods of shotness of breath, swelling in my ankles..I had a irritating cough also..I am a healthcare provider.I was at a patient house and became breathless, it was a blessing that the patient’s daughter put oxygen on me until the paramedics got there.I was rushed and had thrombalytics dripped in my lungs.I was all but frantic at this time. .I just wanted to be ok. I often feel movements in my legs, the ultrasound showed small dvt in my right lower leg. It is very hard to cope with anxiety, not feeling well..I been to doctor and ER numerous of times..IM on coumain now..I’m so fatigued…I got in my jacuzzi and it was an effort to get out…my heart raced and I had to stop and rest…I agree with other posts, we are blessed to be living and the thought of the mortality rate gives me anxiety..u really have enjoyed this site…please let’s continue to talk about our experiences as we go through this healing process.
L Williams I was diagnosed on April 7th 2015, I spent 10 days in hospital. When I met the consultant the following morning he said I was lucky another 24 hours I would not be here. I was out of work for 7 months before I went back on half days. It took me almost 2 months of asking my doctor can I go back to work. My consultant told me that I had massive PE in both lungs, and that it would take me years to recover. I am a member of Killarney Musical society which I joined in 2014. I still went on stage this year and enjoyed myself. I only went back to work full time in January 2016. I am on Xeralto still and will be on it for life. I understand what you are going through and it is hard to explain to others what it is like. When I finally went to the hospital I had pain shooting up my left arm towards my chest. Unbearable pain and couldn’t even lie down to sleep.
Keep thinking positive and if I want to do anything that could put a strain on my body I will always ask the doctor.
I have 3 kids and when I was in er waiting I was joking with my kids that in my 46 years had never been in hospital since day I was born.
The hardest is recovery time feeling dishearted and worried about what others think but I can’t let that bother me I am just thankful that I am still here, there are days I was low but more highs now. At times I felt guilty not being at work, but am glad to be back working.
I feel like I cheated death and each day I wake I am happy to be alive and now live my life to the full. It is not what can’t do but what I can do.
Keep your spirits up and try to live your life to the full
I know this sounds dumb but, I’m tired of, get mad and don’t know what being positive means
Be happy you didn’t die today?be happy you are going to live 4years and not your lifetime? living on an oxygen machine?having people stare at you or people feeling sorry for you.
Be positive I’m leaving my children and young grandchildren who will never remember me?
Know my husband will remarry and know she’s spending our retirement money on trips we were to go on? Stay positive??? I don’t know how that works!
Patrice, Being angry and scared about all this sounds quite normal and understandable to me. It is just plain scary. It is also about having to face our mortality which is also scary. For me, it was about channeling my anger and fear into something constructive. I spent a year putting together the case study of what happened to me and presented it to Director of Quality and the Physicians Quality Advisor with many recommendations to the hospital about how they could improve many of the things they were doing which had jeopardized my life even though they eventually saved my life. Patrice, what you’re are going through is not easy. What I would say is try to be kind to yourself. Have your husband read this blog to help him understand what you are going through so he can be more supportive and you won’t feel alone in dealing with it. And, know that you do have people here on this blog that want to be supportive and do understand what you are going through. We are so grateful to Sara for starting this blog and making it a supportive place. It was such a relief to find this blog and know there were other people that were going through what I was. Cathy
I got 5 large clots 10 years ago from the Nuvaring also! I am 2 mo out of ICU now from a saddle PE. My blood has a genetic clotting disorder! I hope you get tested. I will be on warfarin for the rest of my life. I am trying to walk every day and increase the distance every week but don’t really feel happy about doing much of anything. I am not eager to return to my stressful job and wonder if I could actually do it and be healthy. I felt like I had a knife in my chest for the first month. I can now sneeze w/o pain this second month but my chest feels heavy. Progress– but slow!
Sara,
Thank you so very much for your blog. I was looking on the internet for information on PE. June 16, 2013 I was taken to the Hospital for shortness of breath and chest pain. I had also woke up that morning to leg pain from the ankle to the groin and found a large strange bruise under my knee. I found out that I had 2 non blocking DVT’s in the thigh and from the knee down it was completely blocked. The doctor didn’t do a CT scan but said I must have had a small PE. I was in the hospital for 2 days, then on my second day home I couldn’t breath well at all and chest pains were more. They had already put me on Xarelto but I went back to the ER. They did a dye CT scan and found I had a whole lot of clots and a large one go to my lungs. I too was told I should be dead. It took a little while for it to all hit me. Now periods of being scared and the history on Xarelto doesn’t help. I have been very tired, I am not one to take naps but now I do. Sometimes I can hardly talk I’m out of breath. But the doctors never told me what to expect. Besides that I have had continual pain in legs and heart. And I had been telling my daughter, I thought I must have had a small clot go to my brain because it was glitching out. Reading what you wrote helped me understand. I am disabled and don’t walk much at all. I have been trying to do some casual swimming but it seems to take my breath. Now that I know what is happening I can take it slower and build up my strength. I have had a lot of muscle cramps in my side but not sure if it is connected. Doctors really need to inform us. Again, thank you for doing this, and continued good health to you and all that share in this condition. God isn’t done with us yet.
Hi Jean. Thank you so much for stopping by and for sharing your story with BCRN. I am so shocked to hear they didn’t check you for a PE to begin with – wow! I feel like someone should have been more aware of that from the beginning.
I am glad this post could help you know what some people go through – like me, for example. The more I talk to people, the more I have found not a lot of people are told anything about recovery. My doctor told me that in the beginning, but HE thankfully spends a lot of time with his patients, monitoring their recovery and then in turn is able to tell patients what to expect. He said not a lot of doctors will tell you what he told me and to this day, I remain grateful for what he said. While the prospect of such a long recovery angered me and scared me in the beginning, I think it also enabled me to handle what could have been viewed as a long recovery as a NORMAL recovery, which became an important distinction for me.
I hope you can stop by again. Thank you for your kind words and I will be thinking of YOU in your recovery as you begin down this road. Remember, you’re not alone and I will help in any way I am able. I know where you are now in your recovery!
I have only been home one day since my discharge from the hospital for a new PE diagnosis. I was hospitalized for 5 days.
I was discharged with no restrictions and was so excited to be going home and getting back to my life. Everyone had been asking how I feel and my only answer Is “tired and exhausted,”
I find that I am extremely tired and I sleep a lot. I tried to go up the local supermarket to do some light shopping with my husband but quickly found out that I was not strong enough to do the shopping and had to quickly cut it short.
I am surprised that I was discharged with no restrictions but also no education on what to expect. It was only after I did some research online that I understood that my fatigue was normal and to be expected.
Thank you all for sharing your experiences.
I understand how you feel. I was also discharged with no restrictions and I remember going home the first week thinking that I could do everything just like before. As you describe, I quickly found out that I could not and even small things like going to the store or the mailbox was a huge chore. It was very eye-opening to me to know just what my body must have gone through. I wish you the best in your recovery and please stay in touch. Take care, you’re not alone!
Thank you Sara for responding. I was told that the blood clots in my lungs will always be there but will shrink. So, I am wondering if my breathing wil be restricted to a degree the rest of my life. For follow up care, what kind of Dr would you suggest? Vascular, cardiovascular, or respiratory. Tired all the time. Live alone so can’t rest the way I would like.
You’re so welcome, Jean! I was told a very similar thing – that blood clots in the lung do not go away per say, but the lung regenerates tissue around them to compensate as they become smaller and in a way, turn to scar tissue. I know my breathing has improved greatly over the last year compared to what I was. Sometimes, I still feel a crackling or tightness in my lung in heat, humidity or cold, but I wouldn’t necessarily call it restricted breathing now. I think I remember my doctor saying I would eventually return to 100 percent lung capacity. I, at times, still “feel” it though, but I am not sure how much of that is just because I know it’s there – either way, it is real to me!
I see a hematologist for all of my follow-up care. He monitors by blood thinners and lungs and everything. He also at one time referred me to a rheumatologist because of my autoimmune concerns and I went to the hospital to have a re-scan of my lungs and leg where I had the DVT. But, in terms of care, especially if you are monitoring blood thinners, I have found the most success with my hematologist. I will also post this question to the BCRN Facebook page (if you are there) to see what others may suggest based on their experiences.
Feeling tired all the time is completely normal. I am sorry you are alone and hope you can get the rest you need.
Sara,
Thought I would update you on my road to recovery. I have seen a cardiologist, which had me do a oximetry overnight, which in turn I was put on oxygen during the night. Today and tomorrow the stress test, echocardiogram, chest x-ray, and labs. I am also seeing a pulmonologist, with additional pulmonary function test. I still have shortness of breath, chest pain, leg pains and very tired. I was told this was serious, and scary. But I could not tolerate another one happening. I wake up at night with leg pains and find myself waiting for my breath to be taken away. I am working on being scarred, I can live life that way, I know it takes time. I am to tired to do anything. I am not use to that, even disabled I still tried to keep busy. It has been 3 months yesterday since it happened. I know I am not alone and knowing how many of you have gone through this is a comfort, I am sorry anyone has gone through it too. Keep strong, we will all come through it and better for it. I cherish everyday ever so much more.
Hi Jean! Thank you for coming back and letting me know how you are doing. I am really glad to hear from you. It sounds serious, yes, and I can completely relate to your fear – I would say it is completely normal to feel that way and you are not alone in that! I was terrified when I realized what had happened/was happening to me. I still wake up or am walking from time to time and will get a pain in my side/chest area and brace for what I expect to be the worst pain in my life again! Thankfully that has not happened to me again, but I am terrified of it to this day.
I remember where I was at three months compared to where I am now and you are right it does take TIME and it does get better. I thought it never would and slowly but surely it does and then you have new challenges to face. I am thinking of you and wishing you well and reminding you that you are NOT alone. I hope you keep us updated on how you are. I will look forward to it!
Stay strong and be well.
Hi Sara, I HAVE RA too..what caused your blood clots? Are there any correlation of the blood clots and RA?
Sorry to hear you have RA. RA is an autoimmune disease. If you have one autoimmune disease, you are at risk for getting others. I have genes for autoimmune diseases, and relatives who have had the gamut. I am controlling this by changing my diet. Aristotle, the father of medicine said,”Let food be thy medicine, and let thy medicine be thy food. Check out the inflammatory foods you could be eating. How about gluten? I’ve given it up, even though my tests came back negative. What about nuts? What about grains and corn? Are you GMO free and organic? Are you eating fermented vegetables to improve gut bacteria? Rheumatoid Arthritis is curable without medications. Look at all the ads for chemical ‘cures’, many of them cause further problems. Do research and become your own doctor. Conventional medicine, for the most part, doesn’t get it. Do your own research; be your own doctor. I also have Factor IV Leiden. No drugs!
Thank you, Sara! When I read your story, it was like reading my story.Four months
since my diagnosis….some days are good, some not so good. My life
was turned upside, but I am slowly turning right side up. I did not have a doctor,
when released from the hospital, who explained anything to me about post
care. All my doctors have given very info. Information would have alleviated
much anxiety.
Again thank you.
You are welcome Rosy and I thank you for stopping by. I put this site together to share my experiences and hopefully the experiences of others so that we all might learn from one another and find support and not feel so alone. I remember four months after my diagnosis and it is a scary place – life is literally turned upside down, it is so unreal! I’ll be thinking of you and please stop back. You’re not alone! Take care.
Hi Sara,
Thank you for sharing your story. I had my PE a year ago this past June. My PE was actually a large number of clots on both lobs of my lungs. I was told by every medical professional I have met that I am very lucky to be alive. The clots are now gone although I have some nodules on my lungs that they think may be scar tissue. I have had 4 CT scans of my chest and I refuse to have more. The cancer risk from the radiation passed the high risk point one scan ago. Interestingly, like one of the other people who commented on your post, my PE has been attributed to my use of NuvaRing.
I can relate to your recovery story. Prior to my PE, I was a very active and healthy woman. If I put my mind to something I would make it happen no matter how hard I had to push myself. The hardest thing I’ve had to deal with in the last year and a bit is my frustration with my physical limitations. Even 15 months post PE, I find myself struggling with fatigue. I’m constantly having to dial back my expectations of what I can accomplish in a day. When I compare what I am able to do now with where I was a year ago, I realize I have come a long way. I also know that I have a ways to go yet before I am 100 per cent. I am back at work part-time and I try to exercise every day – I’m running on a treadmill now three times per week which is something I never thought I would be able to do again. I have been beating myself up a bit lately though about not being able to do everything I want in the run of a day. It is really helpful to read about the experience of others who are traveling this recovery road. It reminds me to be kind and patient to myself. Thank you.
Hello Anna and thank you so much for stopping by! You and I have a really similar story of recovery, and I am so thankful you have decided to share it here because it also reminds me that I am not alone. I also had my PE a year ago this past June and have considered myself recovering ever since. I am back to running, but very sporadically at this point. I actually ran my [second] first 5K [since I got sick] this July and haven’t run since. I feel like that race just took so much out of me. I don’t know how I EVER ran a half marathon (or full for that matter) and I hope to again, but most days I really have my doubts.
I still struggle with fatigue on a sometimes daily basis too. I am glad to be reminded that I am not alone in that because sometimes I fel like I “should” be feeling a certain way – and I think that can hinder us (just like in running and sports) because we start to compare ourselves to others and stop focusing on our own recovery. You are right, the difference I feel just in the last 15 months is significant and I try not to lose sight of that when I am having a tougher day than normal.
I am glad to hear you are progressing in your recovery – wishing you the best and please stop back by!
Thank you for this site, it has just been 2 months since my PE, and I was feeling like I was failing at recovery. I returned to work part-time after 6 weeks off from work, and I feel exhausted and depleted. I still experience some chest pains especially since returning to work. Reading your posts today made me feel much better and it is good to hear other people’s experience.
Hi Jacqueline. I am so glad you found this site and left a note – thank you! I remember how I felt at 2 months and NO, NO, NO, a thousand times no you are not failing at recovery. I felt like that as well, and I thought it would NEVER get better. It does, slowly, but surely it does. I know that is not always what someone wants to hear too, but it is true. I look at where I was at 2 months compared to 15 months and I see the improvements, however small they may seem to someone else, they are significant for me (and others like me too!). Take it easy, be patient with yourself and don’t be a stranger because you are most definitely not alone in where you are and where I know you are headed in recovery. Take care.
Hi Sara,
Thank you. There is nothing like a sense of community who understands what you are feeling. I either have family/friends wanting me to do nothing so I don’t over do it or the ones who say to me aren’t you better yet you look fine. I understand from reading your site that I need to listen to my body. I will keep visiting.
Jacqueline
Yes! SO many people think we are just fine because we often do look fine. I know I started looking better within the first couple of months, but I still felt terrible. Glad to have you as part of this community!
Hello. My name is Olivia.
I have been diagnosed with saddle pulmonary embolism. I was in ICU for 4 days, general ward for 2 days and now I am home. This is the 2nd day at home. I don’t have a clue what lies ahead or what I am supposed to do. I was given meds and told I would be on them forever. I am so confused, so tired, so sore, so frustrated and so emotional. Please talk me through this. I can’t do anything because I can hardly walk and breath properly. I am alone and have a young son to care for. And this is so hard for us.
It’s been about a month since my PE. When I was released from the ER I had no restrictions and so I returned to work. I stayed for 3 hours before I went home and signed up for short term disability. I tried to return 2 weeks later, was able to work the full 8 hours but then ended up in the ER later that night for chest pain. ER said I was okay and I returned to work the following week (this morning) and actually collapsed after walking up a set of stairs. Luckily someone was there to catch me. I don’t understand why the doctors never told me that I’m gonna be going through some serious recovery and adjustment… Now I just feel like I suck at recovering. I even emailed my doctor today explains the situation and she responded with, “PEs usually take 1 month recovery, but since your clot hasn’t diminished in size whatsoever, it is reasonable for you to need additional time off work.” What does that even mean?!? Ughhh, frustrated and confused. Tired.
Amber, I was diagnosed on April 7th 2015, I spent 10 days in hospital. When I met the consultant the following morning he said I was lucky another 24 hours I would not be here. I was out of work for 7 months before I went back on half days. It took me almost 2 months of asking my doctor can I go back to work. My consultant told me that I had massive PE in both lungs, and that it would take me years to recover. I am a member of Killarney Musical society which I joined in 2014. I still went on stage this year and enjoyed myself. I only went back to work full time in January 2016. I am on Xeralto still and will be on it for life. I understand what you are going through and it is hard as you sound like a person who does not like to sitting doing nothing.
I will say the hardest is some days you could be looking at the 4 walls and wondering why. Don’t let it discourage you my advice is when that happens and if able get up and go for a walk, just so you feel like you are doing something.
Even the simplest of things like going to the Dentist, you need to let him know that you have suffered from PE, cause I recently went to the Dentist but before I made the appointment I explained that I had PE and he was prepared for me when I went in.
I feel like I cheated death and each day I wake I am happy to be alive and now live my life to the full. It is not what can’t do but what I can do.
Keep your spirits up and try to live your life to the full
I was hospitalized with pneumonia on 7/15 which quickly developed into pluresy. Two days later I was diagnosed with PE. I had surgery on a torn achilles tendon in December 2012 and was in a cast for 7 months. I had no idea I had a blood clot in my leg. Two and a half months later I am back to work (at a desk) – part time. I tried full time but simply cannot manage it yet. I am in bed by 8 each night completely exhausted. I am also do occupational therapy to try to build back strength. I know recovery is a long road to travel but I am happy to be here to travel it! Had I not gotten pneumonia the doctor told me I’d have been in the morgue within a few weeks. YES it is hard but with perserverence WE can do this!
Michele, your positive approach just brightened my day!!! I love how we get one situation to alert us to another more serious issue. I thought I had a pinch nerve. I went to hospital because I was on vacation and didn’t want the pain to ruin trip. I think if I had been home, I would have sat with the pain longer. They said if I hadn’t come in it, it would have killed me. I will join you in persevering, I agree WE can do this! Sara thank you for this community!
Thank YOU for being here. 😉
Michelle, I am so glad you have shared your story as it is different from the ones I have heard and very important for awareness. Thank you! I am glad you are here to talk about it and so glad you found this site. Your spirit is astounding in the face of the pain and hardship I know you are going through. I admire your perseverance and thank you for bringing that to this community. Best wishes to you and don’t be a stranger. Nice to ‘meet’ you! On a side note, I often wonder how long it would take someone to pass from a PE if left undetected. It is so scary to think about. I am glad you went to the hospital when you did!
Hi Sara,
I was misdiagnosed with pneumonia early July and dealt with pain/shortness of breath/all the usual until late August (7 weeks) when I finally went to the ER cuz I had enough of it. Come to find out it was an embolism with an infarction. I was certainly lucky being that I waited that long!
Yes, you were most certainly lucky, wow! Thank you for sharing and have a wonderful Thanksgiving. Thinking of you.
What is a pe with an infarction
My apologies, Michele, I spelled your name wrong.
Thank you all for the warm welcome! This website is a Godsend. I have a great doctor and kind of knew what I was facing but to actually face it has been a struggle but I know that this too shall pass. Its great to have a community and to “see” others who have faced the same obstacles. When I was first diagnosed I felt so alone even though my family was and is there to support me. If you have never experienced PE you just cannot know the difficulties. So many things I want to do but am unable due to not having enough strength or stamina and many people don’t realize that although I look “normal” on the outside, the inside is still in shambles. I’ve come to realize that only I can decide for myself what I can or cannot do. If I feel I cannot do it I just don’t at this point. I can’t wait for the time when I can stay up past 9 PM LOL. A few weeks ago it was 8 PM so I am making progress! My prayers go out to all those who are going through this but thanks to this site WE are NOT alone! Hugs to all.
Michele, I felt the same way staying up. I was a night owl before my PE and falling asleep before 10 pm was frustrating. The first time I stayed up to 10:30 pm I was so excited. I am learning to be okay with not doing things I use to, I tend to get upset. My husband shared with me this week that at first the situation was a Red light – when I was in hospital. He said now I am in Yellow/Amber light phase where I need to be cautious with what I do. Go slow and balance. He reminded me that I will reach the Green light where I can go as fast as I want to! This really helped after my doctor appointment. Have a wonderful weekend everyone!
I love this stop light analogy! Thanks for writing it here. I hope you have a great weekend too. 🙂
I’ve been out of the hospital for nearly 4 weeks with PEs in both lungs and in my shoulder. I was not prepared for the extreme fatigue I feel on a regular basis or the resentment I receive from my spouse. He tries to help, but doesn’t understand that I need him to watch our daughter so I can sleep. He thinks I’ve slept enough and gets defensive when I need a full Saturday to rest. Does anyone have any suggestions because this situation is not helping my recovery. He resents the fact that I can’t work all week,clean all weekend, watch our daughter, etc. I need time to rest by myself. I know it’s not fair to him, but I cannot heal with all this push back. Any advice is appreciated.
Hello and welcome! I understand where you are, absolutely, and it is so difficult. I think I went through this a little bit with my husband in the beginning – I was very fatigued and even so much as walking to the kitchen had me gasping for air, let alone to be able to cook anything. I recently spoke to my husband about all of this and he said, he did not know what I was going through so I would ask you, does your husband know that you need time to yourself? If not, tell him, even though it is hard. You are right, you need time to do nothing, sleep, read, relax – and just begin to process what happened to you – or you could have a longer road ahead of you.
Second, something that helped me understand what was happening was something my doctor said – and that is people can’t quite comprehend the micro-damage that is done to our bodies when we have a clot, especially one that travels to the lungs and, as in my case, passes through the heart to get there. The damage is devastating to the body and literally takes a very, very long time to heal. It is as if a bomb went off in our bodies and our body has to work to heal that without the help of any tools like bandages or stitching. It is so damaging. It’s why we take so long to heal from this. When my husband heard this, it made a difference to him. He said things came into perspective for him when he started to think about how added stress would only add to the damage already done.
I think resentment is a normal part of this, even though I am sure your husband loves you and wants the best for you. Every situation is different too. My husband said it is hard for the healthy person because life continues on for him/healthy and while it abruptly stopped for me/sick, he didn’t know how to handle that because life was fine and then it wasn’t and he wanted it to be. It’s life-altering for both parties. For my husband, it brought him to a literal fork in the road for our relationship (I did not know it at the time) and his choice was to stay and while he was angry at what happened and that I couldn’t be okay right away, he said he realized that he had to nurture me (and what happened) and for him, that helped with being angry. I haven’t talked about it much, and I do plan to eventually, but this was one of the hardest things to ever happen to our relationship.
You are NOT NOT NOT alone in how you feel. When I was four weeks out from my PE, I had no ability to comprehend what was happening to me, let alone what my husband was feeling. I couldn’t. I was not working so I felt like I did nothing all day and nothing all night, I couldn’t offer my husband anything, not even dinner or a date night. It was a horrible feeling. Our families helped out a lot with cooking and errands (we do not have children) for day-to-day things. My husband spent time alone too, he needed to. He said going out and doing things was hard because he didn’t want to leave me at first, but in the end, it did help.
I never stopped talking about it and asking questions (like you have here). I hope this can help in some way, even if it is to let you know you are not alone.
Also, I almost forgot! If you are on Facebook, check out the groups (link on the right sidebar or here- https://www.facebook.com/notes/blood-clot-recovery-network/blood-clot-facebook-support-groups/659814504045991) – a lot of ladies can offer support/advice in those groups!
Dear LAB, though I am not married or have children at home, recovery has been difficult. I couldn’t imagine having to tend to husband or children. Have you had your husband read these blogs. I know people don’t think you are having any difficulty because you put on your smile and don’t complain. My pulmonologist said you could have black holes in your lungs where permanent damage occurs and you have to be on oxygen permanently. I thank God that what I am going through is better. Living alone is hard but carrying for others is crazy. Talk with him or take him to the doctors with you. Best wishes and healing.
Dear LLB, NOT LAB
Hi
Has anyone experienced pain or numbness in your arms after your PE?
Thanks
I am 2 weeks out from a saddle embolism and yes I have been experiencing pain and numbness in my left elbow.
Hello everyone… I was released 2 wksago from the hospital w/5 PEs the doctors were shocked I pulled through. I found this site because tonight wasn’t a good night and was searching for answers. My doctors are great and also told me that my body will let me know how far I can go but I didn’t think I would be this drained. With a family, full-time job, and earning my degree I try to stay strong. This site gave me insight and some strength…thank you Sarah
Hi Alisha. Thank you for being here. I cannot imagine 5 PE’s, and I too am really glad you are here to talk about. Wow, pretty amazing if you think about it, right?! I remember where I was at 2 weeks post-PE and it was a nightmare, I know how you feel and understand the drained feeling well. Take care of yourself, and I hope you can find some support and connections here. We’re glad you’re here!
Thank you so much for this Sara. I returned to work this week after two full weeks in the hospital and and additional week at home recoverig from multiple bi-lateral PEs. I even agreed to a newer treatment for submissive PEs which, primarily designed to preven future pulmonary hypertension, is also supposed to speed recovery. I felt great leaving the hospital but after three days at work I feel miserable! You are absolutely correct – my docs were great at seeing me through the immediate crisis but gave little information about how I might feel — including breathlessness and a heavy chest. I plan on following up as frequently as needed with my physicians! So glad to have found this blog/site.
You are welcome, Patty! Thank you so much for visiting. I hope you are feeling well today and recovering well. I also hope your treatment is working – I have not heard of anything like that so far, but maybe it can benefit others in the future – it sounds very interesting.
I know what you mean about feeling miserable. I did not work for a month after my PE and even when I did go back, it was just hard – there’s not doubt about that. I wish you well as you continue to heal. I remember being where you are and feeling like I needed to communicate with someone who had gone through what I had, which was my inspiration for starting this site. I am so happy to connect with you and welcome!
Dear Sara,
I’m so grateful for your reply! I wanted to follow up to let you that my return to work may have been too quick! The weekend following my return, I started to run a high fever related – my doc’s believe – due to a virus. I was actually re-hospitalized because my white blood cell count dipped to dangerously low levels and my hemoglobin an liver enzymes where askew as well. Even though I thought I would be “good to go” my body has told me otherwise. As I write this, I’m back to work on an abbreviated schedule – my doc is now being very cautious about my health. I’m going to keep fighting the good fight and will keep up with your blog – the information is so helpful.
For my part, I would like to share that I had Catheter-directed Thrombolysis. My understanding is that this treatment is usually used for people with massive PEs who are in critical condition. The new thinking is that this same treatement can be used for sub-massive PEs if the person with these sub-massive PEs meets other particular health standards. The goal of the procedure is to prevent future, possible pulmonary hypertension.
Thanks again – keep up the great work!
You’re so welcome, Patty! I am glad to hear from you too. I am sorry to hear you were not well and back in the hospital – I had problems with my white blood cell count when I was in the hospital too, but I cannot recall why now and I think they are normal again so I didn’t find out anymore. It’s funny how our bodies tell us what/what not to do, right? I even feel like sometimes our bodies let us push the limit and then we find out we should have listened earlier – as in the case of my PE! My body was trying to tell me something was wrong and I shrugged if off as a running injury. I hope you are feeling better and taking it as easy as you need to until you can go back to work. I feel like I also went back to work way too quickly. I just had no idea at all what I was up against.
Thank you for sharing more of your story and explaining the Catheter-directed Thrombolysis. I had not heard of it and I want to learn as much as I can.
Keep in touch and get well SOON!
This information is wonderful. Like so many of the other posts I was diagnosed with bilateral PE 2 months ago. I have good days and bad days with no energy and extreme heaviness in my chest. I was placed on Xarelto which I’m happy about because I don’t have to be monitored every week, although I feel like I speak with my doctor every week due to chest heaviness and upper back pain I experience quite often. Thi site has provided a much needed insight and answered a lot of questions I had.
I’m glad you have found some useful information here Tara and welcome! I know just reading what others have to say was VERY helpful to me and still is. Just to know we are not alone is so empowering and makes things a little easier to manage. I spent many days in the first few weeks of my recovery just scouring the internet looking for others like me who had been through what I had. I remember what it felt like at 2 months – it was scary and horrible and EVERYthing hurt it seemed. I am glad to hear you are in frequent contact with your doctor and he seems to be responsive to you – that is important too. I hear so many people say their doctor just sends them home and they don’t have much follow-up contact. I wish you the best as you continue recovery and keep in touch! Be well.
I am 49 year old husband and dad of two, my DVT/PE was found on October 30 because of a phone call with my sister, Dr Jean.
I race mountain bikes and cyclecross bikes or I did and hope to again. Starting back in early September my race results started to suffer, I blamed this on a “pulled muscle” in my right calf and stress at work. Over the next few weeks my calf never got better but never got worse. On October 19 I was warming up for a cyclecross race and crashed on my left side. The race went from not good to bad and after 4 laps I pulled out because I just didn’t have the power to stay with the group. The next day I awoke to pain in my ribs which I thought was a cracked rib.
On Tuesday October 29 I went to hot yoga and thought this is the hardest thing I have ever done. After yoga and just by chance my sister called and the subject of my ribs and calf came up. She asked me to go to my doctor the next day as a precaution. My aunt had died of a PE in 2001 and our family has a history of Factor Five Liden. I thought I had been tested but found out I hadn’t.
On October 30th I saw the doc at 11:00 AM, after an ultrasound and emergency CT Scan I found myself in the ER cardiac center at 2:00 PM getting pumped up with thinners and a nursing staff that had a look of “he’s gonna die” every time they came to draw blood or push something into my IV line.
I have suffered skull fractures, a multitude of broken bones and have had 10 surgeries in my life but this time things were different. I was told by the ER doc that I had two significant clots in my right leg and that the lower third of both lungs were clogged with clots and pretty much shut down, I was running on about 60% of my lung capacity. The doc couldn’t believe I had been racing in this condition let alone walking around and feels my “cracked rib” feeling was the fall actually causing some of the clots to move. I never had a sensation of pain in my chest before the fall and my shortness of breath I thought was just a fall time cold.
I spent the next 3 days in the cardiac observation wing and received two lovenox injections and 6mg Coumadin daily. Since my release from the hospital I have only been able to go to work for 1 day and feel fatigued all the time. I have been diagnosed with Factor Five Liden and may be on thinners for life. My hemotologist says the fatigue is normal and that recovery is not days or weeks but will be months. Working harder I am told will do more damage then good.
Right now the hardest thing to deal with is the anxiety, mild depression and constant fatigue. I do not hurt but can not exercise as I my doc doesn’t want me stressing my lungs and I just don’t have the power to do anything. Mentally this is hard, to just sit on a couch is hard, in fact this sucks and fuels the depression. Luckily I have a good support group, so far good doctors and I am still breathing.
Thanks for the information and I hope everyone who posts can find a way to regain their life and hopes. Remember the DVT/PE may change what we can do but it can not change who we are.
Hello Tim. I cannot thank you enough for stopping by and sharing your story with BCRN. THANK YOU!
Your story reminds me so much of my own, it brings tears to my eyes to read it. I am so thankful you are here to share it and here for your family too.
I had run the morning my DVT became a problem/broke off to form a DVT. I also thought I had pulled a muscle in my calf and I struggle sometimes to share this with other athletes who do not think it can happen to them. As you can attest to, it DOES feel EXACTLY like that for some people. I would be grateful if you would like to submit your story to be shared on the site because you are an athlete and I think it is important to spread the message of awareness to that community as well, because we are all at risk. If you are interested, here is the link and it looks like you already have a really food story written – http://bloodclotrecovery.net/how-to-share-your-story/
Your story is one of hope and reassurance. I know the feelings you have now – anxiety, fatigue, depression – it hurts, not only physically, but mentally. I felt like everything that made me happy was stripped from me and it has taken so long to get even a part of that back. I am still not back to where I was as an athlete and I do not know if I ever will be, but I have made progress and it feels good to get outside and walk or even run my own errands or go to a movie, you know. You are not alone, as you have so graciously shared with others.
I wish you the best, Tim and please keep in touch!
Sara,
Thank you, just sent my story along with a picture.
Do you know of any athletes recovering from PE sites?
Tim
Tim, thank you! I just got your story and I will feature it as a Survivor Story down the line. I will let you know when it is up so that you may see/share it too. Thank you so much!
I do not know of any sites in particular about recovering athletes, per say. Are you on Facebook? If so, there is a Running After a PE Support Page that I have found helpful to connect with other athletes. There are some cyclists on there too so you are welcome! Check it out if you are able to: https://www.facebook.com/groups/81164797980/
If I find anymore, I will share them on the blog. I would like to post about/to athletes more on this site as well.
Sara,
Not a big Facebook’er, I think the biggest thing for cyclist is riding while on the thinners. The doctors aren’t all that hip about me riding and it has been requested I not ride, snowboard, play racquetball or do anything that could lead to a fall at all. Right now that isn’t an issue as a simple walk is still somewhat hard. The whole fatigue, low energy thing gets in the way.
Most athletes will never think something can happen to them, we are an egocentric, overly confident group. If we weren’t we probably wouldn’t be doing the stuff we do in the first place. My aunt died of a PE so I was somewhat aware of the condition and I didn’t even think I could be suffering from it.
How long did it take you before you were doing more than just walking? My goal is to get on my trainer (stationary bike stand) before Christmas. If I could do a 1/2 hour by than I would be happy.
Did you ever suffer any heart palpitations? I have it every once in a while, doc thinks it is simple stress/anxiety. I don’t doubt that but I haven’t seen this listed by anyone else who is going through PE recovery.
Just went through the Thyroid tests, so far so good. I have been lucky in that I responded to the thinners in textbook style and outside of the lung damage done by the clots I am only having some minor issues with my liver. I have hepatitis style symptoms which can come from the Lovenox and drugs of this type. My liver enzymes got really high but are now decreasing since I have been off the Lovenox for a week and a half.
I think a cool thing to add to the website would be a picture gallery were people could show their progress and accomplishments.
What part of the country are you in? I am in the Chicago area.
Hi Tim,
I understand about the physical activity and the mental/emotional toll it takes. I know after I was released from the hospital, my doctor told me I could start running again as soon as I felt like it – which I was convinced would be the next week. I tried to talk to the mailbox, with my oxygen tank for assistance, and I could barely take five steps before I retreated to the couch, convinced I would never do anything I loved ever again. My return to running has been very slow. I ran a 5K over the summer, which was about all I could handle. I am planning to participate in four mile walk with my family on Thanksgiving Day.
I must say, although I know I can run again, it will never, ever be the same for me and right now that is the struggle I am going through – trying to figure all of that out and what it means for me. I have actually thought of giving cycling a try! There are some days still, even 16 months out, where getting out of bed is difficult and I wish I didn’t have to. I never thought recovery would be what it is. I thought it would be like recovering from a running injury – you’re out for a little while and then you go right back to where you were. That has not been the case. In the beginning, I hated everything not running meant for me. NOW that I can start running again, it’s just not there anymore. I don’t know which is harder to deal with frankly! I do know I am grateful to connect with others like myself who are facing similar challenges. I do know we have to hope something better is to come.
I am sorry to hear about your Aunt and glad you are here to talk about what happened to you!
I never experienced heart palpitations, but did struggle getting my breathing back. I lost a decent amount of lung function, but I do feel that is resolving itself. I have heard of others experiencing heart palpitations, though, I just don’t know if like you said, is it recovery related or all of the stress we are going through? If I feel something “funny” in my heart, I can usually equate it to a panic attack or emotion at the time.
It took me 363 days to run again. I know that sounds like forever and I guess it felt like that too. I should explain that was a full run of two miles with no stopping. I had jogged-walked here and there a handful of times before that. I would say to you – TRY! If you get to a point where you are feeling like you can 1) walk to the trainer and 2) even cycle for a few moments, that is a step to get you back to where you want to be. I found that my body told me exactly when I could and could not do something. I listened every time. Some days walking was great, other days I went down the block and hobbled back home within minutes. That part really all depends on the person. Some people run/cycle/lift much sooner and others longer.
My thyroid is a mess, which I think contributes to a lot of my fatigue and weight/exercise issues. I am on the road to getting that resolved, though.
I am glad you are responding to your treatment. I have too. I was on arixtra (cousin to lovonox) for almost 10 months before I was able to come off of it and switch to warfarin. This was done with a Vitamin K supplement, which has helped to keep me stable since then and helped me to not have to go back on injections. I am glad it sounds like your liver will be in less danger now.
LOVE LOVE LOVE your idea of a picture gallery. I’ve added it to my list so I don’t forget (another problem I’ve seemed to have developed) and periodically when I do site updates and changes, I will see what is available for something like that. I think it would being more of a sense of community here, which is fantastic.
I’m in Columbus, Ohio. So, we’re kind of neighbors in a roundabout way!
Enjoy Thanksgiving with you and yours.
Tim,
I thought you might like to visit Roland’s site too – http://clot-buster-triathlete.blogspot.com/
He features athletes who have been through what we have. You might find some inspiration there (I did) and also, I wouldn’t hesitate to reach out to him to share your story! He is always looking for athletes to speak with too.
Sara,
Hope you find a solution to your Thyroid and thanks for the responses. Your condition was much worse than mine and you are making me feel wimpy ; ). Your dedication with the site and attitude are great and shows that the dark days will turn lighter.
Met with my doc again today and I am now off work through the holiday, my boss, the doc and myself all agree I don’t need the stress and that it is most likely causing the heart issues. I am also going to stop thinking about next season and just worry about today.
Running, cycling, racing or what ever it is we do defines us and when that is taken away it is much more emotional blow than we expect. While it is a goal I guess I need to dial back my expectations and just make sure tomorrow is better than today.
My oldest daughter went to Dayton University, my Ohio connection. I went to the link you gave me, I couldn’t find any contact information, am I missing something?
Have a happy Thanksgiving!
Thanks, Tim! You are most definitely NOT a wimp!! 😉 I have a secret to tell you – I am secretly really nervous about cycling. I CAN ride a bike, but it is slightly scary for me – who’s the wimp now?! HA!
I got in touch with the Clot Buster, and here is the email for sending your story to Roland – clotbusterpolkadots@gmail.com
I went to Ohio Dominican, which is right in Columbus. I’m glad to hear you have an Ohio Connection too. I had many friends who went to Dayton, especially for school and independent counseling.
I hope you are having a better today. I am working on it.
Enjoy Thanksgiving and talk to you soon!
Why are you nervous about cycling? Do you fear falling or not performing well? If it is not performing well then just go out there until you blow up and then just keep pedaling.
If you fear falling then don’t fall it is that easy, really. Actually you have to except you will fall, eventually. If you can not accept that then you should think about not riding competitively anymore. Being cautious/nervous is the number one cause for crashing. When people tell me to be careful I say I won’t, I tell them I will be aware.
Video is from 2005 when I was younger and really fast. I am in the cow jersey. Ah, nothing like pace lining on silty dirt at 30+ mph. KNOW FEAR just don’t let it stop you.
My INR went up to 3.8 today, how often do you get your meds adjusted? I was doing so well, hope I don’t have start going every week to the hematologist.
I think I am nervous about cycling because I am on blood thinners, now. My fear would be if I fell and got hurt, it would be serious. I already survived the PE, though, maybe I shouldn’t be so worried and give it a try! 😉 So yeah, my fear is exclusively falling. I’ve never done any competitive cycling before, but I would like to start by maybe going on some bike rides (in place of runs) to start building my cardio back up.
Ugh. INR, right?! I spent about 9 months on the injections because every time my doctor tried to switch me to warfarin, my levels would not stabilize.
My doctor put me on a vitamin K supplement about five months ago or so and ever since then, I have been able to be on warfarin with fairly consistent levels. I was getting my INR checked weekly at the hospital to begin with, but I have been able to go three weeks without getting checked and still remain stable. My INR does fluctuate slightly here and there, but my dosaging has remained pretty consistent. You can read more about the vitamin K on the blog if you haven’t (just search vitamin K because I am not sure if it will show a link to you, either – oh the things we learn with computers, right?!). I will say it does take awhile to get the medications sorted out and I know a lot of people who go weekly while they are getting things under control. I am just happy right now to not be looking at weekly draws forever, every month, you know. I expect I might go through periods of needing an adjustment because everything seems to effect INR (sleep, food, weight, stress), but I hope to not always have to be in that position. This is one of the things I think most people who have not experienced a clot (or had a loved one who did) understand, it is a lifelong issue that requires lifelong care. Not like a running or cycling injury you heal from and get back on the horse. We have to adapt and overcome to do the things we want, but it will never be the same. This is why I think the depression, anxiety and sadness come in as well. It’s a lot of adjustment!!
First don’t let me or anyone else pressure you into doing things that your are nervous about doing. Know your limits and ride well inside them, just don’t be careful, be aware.
I really liked the vitamin K article and will talk to my doc about this. I am spinach and salad guy and have been avoiding them since I got out of the hospital.
Have a happy Thanksgiving.
http://www.youtube.com/watch?v=d4NnBg7yAos
Sorry, thought the video would show up as a link.
Oh awesome! The link did come through to me, it just comes through privately apparently. This look so awesome. Thanks! I really enjoyed watching it.
I am feeling so poorly at the mo aged 69 and 5 week ago had multiple blood clots and my
Anxiety is through the roof ,just been to GP as I have ME I have an estrogen implant done every 5-6 months its been 7 and they think I could be in withdrawal symptoms as I feel I am going to faint
Ect plus the fatigue which is no dought due to the clots so glad I found this blog x
Welcome, Carol! I know it might not be much consolation given what we have all been through, but I am glad you are here. As Tim said, you are most certainly NOT alone, which is the main reason I started this site – to bring those together who have experienced similar things. It is so difficult, especially at this time of year when so many celebrations and busy occasions are taking place – it is difficult even to get out and do something. It is all a part of recovery, the feelings we have, and so many times it goes left unsaid that the emotional and mental stress of this is very hard to deal with. What you are feeling is real and it’s so frustrating.
I am sorry you are feeling so fatigued. I have been there myself these past few days. I hope that you were able to have a nice Thanksgiving in spite of everything. I’m thinking of you and wishing you a better today than yesterday! Don’t be a stranger here and talk to you soon.
Thankyou Sara I am like a coil wound up ,I feel like every time I walk I am going to faint
But being here has helped me loads feeling very emotional at your reply thankyou xxcarol
Of course, Carol! Just checking in to say I was reading back through comments and am hoping today was a little better than yesterday. You are not alone out there!
Carol,
I too have super high anxiety these day. I am one month from the day I was hospitalized and have woke up crying the last three mornings. Don’t feel alone with this or be afraid to tell others about the anxiety. I have been having panic/anxiety attacks for the last week and half. I have been told it is part of the physical stress of recovery so just try to think of this as normal.
Remember we are out here and if you don’t have someone to talk to write to the group. My anxiety is everything from not wanting to go through this again, will I be able to live the life I want or just wondering if I will be able to handle the stress of work again. Nothing you are feeling is abnormal and tell your doctor about this. There is nothing wrong with taking anxiety medication if needed.
All we can do is keep pedaling forward. Take care of yourself, we are many and you are not a lone.
With thanks Tim it is so hard at this time of the year as their is a lot to do,
I love Christmas but feel to exhausted to go out and see any thing of it ,gran children’s plays ect , I am so grateful of your reply as I was feeling very alone and scared x
Sara,
I found your story while searching the web for info on PE recovery. I am 47 years old, was on birth control pills for 30 years and was wearing an aircast on my leg for a month this summer. I was discharged from the hospital 3 months ago. I had too many PE’s in my lungs for the doctors to even count. I also had a DVT in my calf. Most days, I feel good and then out of the blue, the pain in my chest reappears. It’s almost as if the clots are saying, “Hey, remember us, we are still here!” That makes me take a step back and re-evaluate what I am doing. I know that there are ups and downs of recovery, it’s just hard to not get panicked that it is happening again! I was feeling well enough to start exercising again and that made my INR drop below therapeutic. They have increased my Coumadin, so I am hopeful that I am back in the therapeutic range this week. It’s difficult to not let your emotions get the best of you. As I type this, I am thinking, “Is there a new clot? why am I feeling lousy again?” When in reality I know that there will be ups and downs. I will however, not wait as long to go to the ER this time. I was given a lot of information from the hospital about recovery. The information however was not from other people with PE’s. I am glad that you are telling your story. Mine is very similar. This is such a hard illness because people don’t quite understand it. Keep posting info to help others.
Hi Ms. Jackie. Thank you so much for stopping by and sharing a bit of your story here! I think it is so important for us to hear the other stories because you just never, ever know when you will share something that will help someone else in their time of need. I really, truly thought I was alone in what I was going through (I was young, active, healthy, etc.) until I started reaching out to others and found out that no, I in fact was not alone – and that is how I got this site started to begin with.
I am very grateful that I do not worry about clots happening again too much (which, then worries me that maybe I should!!). It is such a funny thing, what I do worry about is getting a clot and not knowing it is happening again. As I said in my story, I thought I had a pulled muscle….what if the next time it feels like something else I don’t know about? I am thankful to hear about others’ experiences and what it felt like to them because I think I file that away and hope it helps me or someone else out if ever needed in the future.
Thank you so much for your kind words and for sharing what you are going through with recovery. I am still on the road to exercising/running again. I applaud you for getting out and trying and I hope you can remain therapeutic in the future. It’s so hard – we try to take care of ourselves and even that can cause a problem sometimes. That is SO frustrating and like you said, something that so many just do not understand.
As 3 months out, I was still experiencing significant and frequent pain. I thought it would never get better, but it has with time and that is really the only thing I can say – time matters. I did not want to believe it myself in the beginning, but it has turned out to be true.
I am wishing you the best and please stop by again sometime and let us know how you are doing. Take care!
Morning all after having 13 years with chronic fatigue syndrome ME and 10 years of that on a estrogen and torestrone implant ,nobody is sure that my PE,s come from that but I was use to have my implant done 5 weeks ago as it was due every 5/6 months but have been told can not have it due to the clots I actually feel like I am dying the anxiety is so bad every time I try and walk I think I am going to faint I am a night mare on my own ,would I have anxiety alls from the clots healing this feels like a withdrawal to me I don’t know how to cope with feeling so poorly ,I am on my own most of the day as my husband is working how am I going to get through this I really don’t know ,I am just laid up all day scared o move !!!
Sara,
First of all I just want to say how therapeutic it has been just type my thoughts these last few weeks. I know I can be a bit wordy but your site has allowed an outlet that has been very helpful.
I am now 5 weeks out and feeling lucky. The acceptance has sunk in, the fatigue has lesson, most likely because I am not trying to do things that I shouldn’t and have come to terms with and have found ways to cope with the anxiety. I still wake up around 3:30 every morning with anxiety attacks but have learned to not let those negative feelings overpower me and can get back to sleep faster. While the physical desire to exercise is not there I was able to do a two mile walk with my dog last weekend. It took 1-1/2 hours and it made me go to sleep really early but we finished the loop and got to enjoy the outdoors again.
I have made 3 full days of work this week and feel I will make the whole week. It makes me laugh to think working three days in a row is a big accomplishment but it is. To everyone who continues to struggle we are hear to listen and hopefully you too can start experiencing some positive changes of your own.
Hi Tim! I am glad to hear you have found discussing this here helpful – that’s what it is about and there is no such thing as too wordy when it comes to what we have been through! It is a thought of mine to get some sort of forum going so we can have more live discussions, but that is taking more work than I anticipated so it’s not quite ready yet.
I am so grateful to hear about your progress! Thanks for stopping in and sharing with all of us – I am hopeful that reading through comments and hearing things like you shared will help someone else out in their time of need. It is awesome what you said, Tim – a two mile walk is an amazing accomplishment after what you have been through, no matter HOW long it took, as you know! I am so glad you see that as a great victory as how far/fast I went was something that was hard for me to come to terms with in the beginning. I thought I should be right back to where I was (which was not fast anyway) right away and that something was wrong with me that I wasn’t. The same thing happened when I went back to work, I did not understand the fatigue and why I wasn’t “better.” Reading what you have done gives me hope still. What you said about coping with the anxiety/fear is pretty powerful too. I know that will provide some encouragement for others. Look at what you have done in just FIVE weeks!!
Wonderful, wonderful message, Tim! Thank you again and keep in touch, as always.
I hope this next week of working goes well – small steps and you’re getting there! 🙂
Good news, INR is staying stable and I don’t have to go see the doc for another month.
Yesterday I started seeing a therapist for my anxiety. My reasons are a little different then most, for me it is the thought of recovery. This will be the 10th time in my life that I will have to face an extended recovery period that will prevent me from doing the things I enjoy. The thought of the fight ahead to just get marginally back to were I was is wearing on me. Not only that but the knowledge of knowing I will either be on drugs for life or have a better than 70% chance of getting clots again has not been very acceptable to the old gray matter.
To help myself I am going to start sitting in on yoga classes today. The place I go to is cool with me just sitting there. At least I will be out of the house and can begin to move a little again.
Hi Tim! I am glad to hear you are stabilizing your INR. I know that was one of the best feelings for me. I felt like I was really making progress.
I understand your anxiety completely and you and I both know, it is not in our heads. I would be interested to see how yoga goes. I have thought about doing something like that! Actually, I was thinking about doing Tai Chi or martial arts to feel like. I have heard many people do Tai Chi to recover from things like chronic pain and stroke. My father, who as rheumatoid arthritis really enjoys doing Tai Chi and it has helped his flexibility a lot. So, please keep us updated on how yoga is.
Thinking about you today and hoping it is a good day in the grand scheme of things. The though of facing another clot again is insurmountable to my brain as well and I hope we both do not have to go through that ever again.
I think you’ve given some great info for people who may not know how to face what is ahead. Thank you for being a part of this community, Tim!
Sara,
I managed to spend the 90 minutes in yoga on Saturday but maybe only did about 10 to 15 minutes of actual work. Today I did about 20 minutes on my trainer and noticed a similar experience that I felt in yoga. My ability to work was directly tied to my heart rate, when I ever my HR got around 120 bpm I would begin to have chest pain that would intensify with more effort and my strength would start to evaporate, my guess is this is caused by the pulmonary infarction. In your recovery did you find a similar ceiling in your HR and if yes was it something that could be worked through or just took time?
Thanks for sharing this with me, Tim. I did not actually wear a heart rate monitor with my return to training, but now I wish I would have because it would be more than interesting to compare the data.
Just going by how I felt, I think as my heart rate increased, it become harder for me to keep going. I never really experienced chest pains, but I did experience lung pain, especially when my breathing started getting more rapid, and that hurt to the point of me stopping. I did notice my strength would evaporate VERY quickly once my breathing became quick and I was working harder – which I would tend to associate with a higher heart rate.
It took me time to work through it. It was like I would reach a ceiling, yes, and I could not possibly do any more. No matter how much the will was there, I just could not do it. I literally could not do it. I think that is very normal, especially since you and I are both used to pushing ourselves to the limit AND then some! I could not do that for anything. It has improved with time, though, and I am confident it will for you too.
Right now, I am fighting an emotional battle more than anything. I don’t WANT to run like I used to because so much in my body has changed and that is very hard for me to try to comprehend right now. I don’t really understand it or understand how that desire could just go away. It is a new phase of what I am hoping will be recovery and then I can help others maybe start to understand how they feel too. Going from athlete to what now feels like nothing is not easy for my brain to grasp, as you were saying.
All I can say is (and I don’t know if it helps, but it did for me) you are really not alone!
Sara,
To answer the yoga question first, I am not and do not go to yoga for relaxation or to meditate. I go to move my body and hopefully get stronger. I go there to challange myself. Others may go for the breathing and meditation side but I do not. My zen place is riding so hard that all I can focus on is the thought or feeling to go faster or to make the person I am racing hurt more then me. It is selfish and a reason I have a hard time riding as a recreation. My mind is never more clear or full of purpose as when I am racing hard.
This moves into your comment of your emotional battle that ” I don’t WANT to run like I used to because so much in my body has changed and that is very hard for me to try to comprehend right now”. I too have been at this desire cross road before and did decide to stop. Not running and walking away for a few years can be good recovery in its own way and does not meen you are giving up on yourself or others.. Also, please don’t run to prove a point to us, run because you love it and it makes you happy.
Hi Tim. Once again, thank you for sharing your experiences here as it helps me grown and learn too! I really think a break from running might be good for me – actually, I have been taking one without meaning too since I haven’t been running. Still, there is a part of me that wants to – it just is so much different now. I hope you and your family had a wonderful holiday and enjoy they New Year holiday coming up! Thanks for being a part of this community because you bring a unique perspective to it as an athlete. Take care!
Happy New Year!
So 2014 is here and I am beginning to settle into the current me. It has been 2 months since I was released from the hospital and the road sure has been rocky. My biggest achievement has been getting back to work and learning how to exercise on a much reduced level. I can now participate in 80% of a yoga class and have spent up to 45 minutes on my bicycle trainer going really slow. I have found my triggers for tiring myself out and know how to control my heart rate and slow my breathing better which really helps. I am also hesitantly accepting the realities of the PE. While I have a goal of doing one bicycle race in 2014 I have accepted the fact that it may not happen and will be happy if I can just get on the bike and enjoy the ride.
I still have depression issues and any type of stress still causes anxiety. The current gray snowy weather in Chicago isn’t helping much, specially since I can not go snowboarding. Fortunately I have found a good therapist and expect to be seeing her for some time.
Sara, regarding your running, no one but you can answer the questions swirling around in your head. The only thing I can ask is running still fun? Are you running because you enjoy just being outside and moving or do you feel you have to because it defines who you are? I found out the hard way that once I stopped racing because it was fun and started racing because I thought it defined who I should be, it became a chore and I burnt out. If you ever wanted to talk about this off line let me know.
Happy New Year to you and yours as well, Tim! I hope you were able to enjoy the holidays. Thank you so much for telling me about your progress. I, for one, can tell a difference from when I first ‘met’ you until now and your progress gives hope to those who may still be going through or coming to the part of recovery that you have already gone through. I am very grateful you have been open with me and this site in sharing your struggles, setbacks and concerns. I hope you can continue to increase the training you are doing and get back to where you want to be with riding as soon as you are able!
I don’t know if running is still fun because I haven’t done it in so long! I think the solution would be to give it a try again and see how I feel. Thanks for your support and for reaching out to me, Tim. I really appreciate that and feel like I can relate to you in recovery as an athlete. I am excited to share your story too, which is set for next month – I have not forgotten you! 😉
Did you get back to a point where racing was fun again? How did you do it? I know you said you took a break, and I think maybe that would be good for me – but I have already had such a long break! Maybe I need to TELL MYSELF it is OKAY to take a break from it and then take a break without feeling the pressure to come back from it.
We are bracing for a snow storm tonight/tomorrow here so I you all are staying warm and safe there! Keep in touch.
Hi Sara, It’s been a while since I’ve updated you, so thought I would share a little. I am still on oxygen at night and sometimes in the day. My oxygen level goes down in the 80’s. I had been put on a high blood pressure med in Sept. The clots were in June when I was put on Xerelto. I have had really dry skin and then started to get a rash on the face with red big blotches, then it would become scaly and it was itchy also. I have lost a LOT of hair. I went off the HBP med. It is a little better but am still having some problems. Has anyone had problems with Xerelto doing these things. I still am tired all the time. I joined the Y at the beginning of December but still haven’t had the energy to go. Shortness of breathe is still a problem and the pain in the right side of the heart. Do you know how long the pain in the heart can last? I got pneumonia in October and the ER doc. didn’t say or do anything about it. When I seen my doctor a month later he told me I had it and put me on antibiotics. It’s been a month since then and I still am coughing up green phlegm at times. Now it seems that I am starting to get depressed and I don’t like that. I don’t want anymore meds, I am on too many now and find I am skipping some because I am sick of them. I still take the important ones. I may have to change from the Xerelto to Coumidin because of the cost. That may take care of the skin problem too. Sorry for all the gloom. I try to be upbeat but as you know, people don’t think you are going through anything. I stay home as much as possible. I love to crochet so it keeps me busy. Been crocheting minion hats. Had a lot of orders on that, plus scarves for Christmas. Thanksgiving was a rude awakening when I went long distance in the car. Found I got scared of the traffic. Talking myself out of that! I really want to get back to swimming. Use to swim 1 mile each time. I also do weights. Have to start little and build myself up slowly.
It’s good to read the blogs, we are all in it together, and I am thankful for that. Take care and happy New Year to all.
Happy new year all x
As I am 70 years old and I am finding it really hard to get back to how I was pre clots ,
I use to have implants done in Harley street for energy as I have ME or chronic fatigue and can no longer have them as they would interfere with the warferin it’s 8 weeks since the clots ,I also have lots of other illnesses to many to list but I am finding I am getting secondary things from the clots ,
I have never had blood pressure it seems its gone up ,and they want me to start beta blockers but that scares me as they restrict the lungs so I said o GP I would buy a machine and record it for 3 weeks before I start them it’s sitting about 135/71 which don’t seem to high I have had a prostatic tremor diagnosed as well since the clots I have it in my legs the neurologist said its like being dizzy in the legs ,I am fine sitting and laying its when I stand x
Oh we’ll it can only get better I thank god for still being here for a few more years I need to try and swim or walk when possible xthanks for listening its so difficult as people just don’t understand !!!carol
Happy New Year, Carol to you as well and thank you for being here! It is very difficult to find people to understand or know what we have gone though so I am glad when someone like you shares their story here because you just never know who it will be able to help.
I am thankful you are here too! I hope you can keep us updated on how things go with your high blood pressure. I did not experience that personally, but here may be other people here who have. I’ll be thinking about you as we head into the new year and wishing you the best on your continued recovery.
Hi Jean! I am really glad you stopped back in to update me/us on how you have been doing. It is great to hear from you. I hope you are having a happy start to the New Year, but I know how you feel. I have not been in the mood for holidays or celebrating. Even thought we have much to celebrate because we ARE still here, some days it just doesn’t feel that way, you know.
Before I forget, I asked on my Facebook page about the heart pain and Xerelto and I’ll update you with what some people say from their experiences. I did not personally have pain in my heart so I can’t tell you what I experienced, but if anyone can shed any light on that, I will pass it along. I would also like to get some kind of forum going on this site so people can ask questions in perhaps a quicker manner.
You said something that really resonates with me and I think a lot of people here – “Sorry for all the gloom. I try to be upbeat but as you know, people don’t think you are going through anything.” Please, one, don’t ever be sorry for the gloom, Jean! We all are going through that and I know I, for one, have found it helpful to talk about it and I think doing that is really very helpful. I understand what you are going through with medications, cost of them and also the depression. None of this easy – in fact, it just might be the hardest thing I have had to go through and I’m not sure HOW to deal with it, other than I know I wanted to create a community where people like me could come together and talk about things and maybe if not get advice, get support for the things we are going through. Second, you are right, people either do not know or do not think what we are going through should be as long or as complicated as it is. I know many people in my life did not understand when it happened -and still do not understand what I am going through to this day. It is an extremely difficult thing. I am sorry to hear about your Thanksgiving experience, I hope you were able to enjoy some of the holiday. I also know, even that can be asking a lot of ourselves!
I am glad to hear one thing, which I worry about for some people – you have things to make you feel a little better. Crocheting is great to hear and I hope you can get back to swimming sooner or rather than later! I am a huge believer that any physical activity we can do is helpful for not only our bodies, but our minds. I know getting back to the physical exercise part of life has been VERY difficult for me. I have not really done it ye, but I really want and need to.
I am glad to say we are in this together and keep in touch. I’ll get back to you with what I find out and hopefully we’ll get a forum up for some questions too, but until then, see you here! 😉
Oh dear ican relate to all of the last message ,but was looking positive for 2014 but already only the 8th of jan I have had a Chest infection and toothache and I had a GP call to say I am anaemic so that’s a good start to the new year and no dought I will get thrush from the antibiotics !!!!!
My most complaint about the PE is this thumping heart beat in my head and chest when I get up from a sitting position ,and my pulseating head x
My GP said o start beta blockers but I have not yet as I am recording my blood pressure for 3 weeks ,which ranges from 124/70 to 136/68 does this seem high to any please ???
Well this morning I had a walk round the block and it was really good to at last do little and often luv carol
In response to Carol:
Your Blood pressure is good. Your diastolic (bottom #) should be under 80, 70’s better. Top # should be best between 115-135. So if you keep it at where your at its good. Being relaxed when taking it will keep it down. Deep breaths. Hope this helps.
Hi Jean! I asked on my page about some of your questions and here are some of the suggestions some fellow readers had re: Xarelto –
– No issues here. Actually, my hair and skin are better than when I was on warfarin. Have you had your thyroid checked lately?
– My side effects greatly diminished when I switched to Xarelto, have you been checked for a lupus flare-up?
Again, no need to answer here and I don’t know if it is helpful or not, but those were the common suggestions of people to help out. Most were more satisfied with Xarelto than with warfarin/Coumadin. Hopefully this at least helps give you some avenues to explore and I do hope you can figure out what is going on soon!
Carol, my BP was a little high after the blood clots and 3 months after the cardiologist put me on meds. I never thought I’d needed it but went with the flow. After I started having the side effects, I looked up about Losartan. All the symptoms are there. I have been checking my BP after I stopped taking them and 2 weeks in and not one high reading. I will stay off them and the side effects are starting to go away. I am 65 and have a few additional problems. Mostly my digestive system that is too slow from damage that the diabetes caused. Hang in there, things do get better. I am almost 7 month so post PE. I understand being scarred, I think to some degree all of us have and still go through being scarred. My thoughts and prayers are with you. We have to be pro-active in this walk.
Hello PE survivors, I hope everyone can start feeling better in 2014 ; )
Sara, I stopped racing competitively in 2006 for several reasons, I was getting divorced, my work was requiring more travel but the biggest reason was because I burnt out. I went to a race one day and couldn’t even take my bike off the car. I had raced one thing or another and even spent some time pit crewing on a race car team since 1976.
From 2000 – 2006 I raced about 17 – 19 times a year, ran the mountain bike team for a local shop and did a lot of mechanic work on my buddies bikes. In 2006 I went to a race and just couldn’t do it anymore, the travel, training and living on a bike seat for the majority of the summer just wasn’t worth it anymore and I walked away. I did a race here and there for a couple years but there was no training or desire. During this time I did things I hadn’t for years or never had done, met my wife and didn’t worry about miles, my weight or anything bike related. In 2012 I started riding more and it was fun again and decided I would try racing a few times in 2013. I raced 5 times this year and was feeling better until early September when I started feeling weak. But this summer I had more fun racing and riding than I had in the last 10 years. It felt good to ride hard, go to the races and see old friends. What I find interesting is the break kind of prepared me for where I am today. If I hadn’t taken the break I don’t think I would have the patience that will be needed to recover from the clots or be as willing to seek help, I would have just charged forward and probably just do more damage.
So maybe you need to take a break and do some things that you couldn’t in the past because you had to train or didn’t want to miss an important race. And than maybe one day you will wake up and just go for a run around the block and again rekindle what it was that made you run in the first place.
Hi Tim! Always great to hear from you – thank you for coming back. 😉
I am glad to hear more of your story and your insights as an athlete too (can you tell I don’t consider myself one, mostly?!!) and appreciate your time in telling me.
Something you said really has an impact on me today. You said, “If I hadn’t taken the break I don’t think I would have the patience that will be needed to recover from the clots or be as willing to seek help, I would have just charged forward and probably just do more damage.” This makes a lot of sense to me and I can see where you are coming from. While I do think I need a break, I was kind of already on break when my PE happened – I was gearing up for a season, but did not have any specific training goals in mind at the time and was just planning to run as a coach and not focus on my own training. If I had been in the middle of training, I don’t think I would have been able to focus on recovery because I would have been too concerned about any upcoming events I may have had. In this way, I can see how allowing myself to take a break and now worry about it NOW might actually do a lot more good!
Great insights, Tim, I keep re-reading what you said. Thank you so much.
Sara,
You are welcome, I hope you can find your center on this question and remember, the best decision is the one that makes you happy.
To Carol, I still have soreness in the heart area that is just to the right of my sternum. I describe the feeling to the docs as like having a hockey puck sized object pushing down on my heart. My aorta enlarged (an aneurism) to 4.6 cm which maybe related to the increased blood pressure from the PE’s. While this can be the cause of some of the soreness I have had three different doctors tell me the soreness is most likely a mixture of muscle atrophy, stress from the PE’s and pulmonary infarction caused by the PE’s. I have been told this soreness could stop tomorrow or last for months. In February I am suppose to go for a more intensive cardiac check to make sure my aorta hasn’t gotten any bigger. Be sure your doctors know about your pain and let them know if it gets worse.
Thanks, Tim! Best advice going into this New Year. It’s not too late to make that happen – happiness!
In response to Carol:
Your Blood pressure is good. Your diastolic (bottom #) should be under 80, 70’s better. Top # should be best between 115-135. So if you keep it at where your at its good. Being relaxed when taking it will keep it down. Deep breaths. Hope this helps.
Tomorrow I turn 50, yeh me!
Had my first business trip that required travel today, guess where I had to go, the pulmonary/cardiac wing of the hospital in Danville, KY, I call that irony. At least I had some stories for the nurses.
Hope everyone is doing well.
Happy Birthday, Tim! I hope you enjoy it!! Hope you are doing well too and having a great birthday.
Hi Everyone,
I haven’t written for awhile, this journey of healing has it’s up and downs. I had my original clot extend while on Coumadin and had to be switched to Fragmin needles. I have just reached the 6 month mark and was going to be able to move to aspirin as a precaution however I recently started having pain in my lung area. The pain came after a frigid cold snap here, it was -32 degrees celsius for a week. I was also doing a lot of walking during that time outdoors, and using my backpack. I think I over exerted my lungs. I am writing to find out if anyone had pain after 6 months and also if weather factored in at all with your recovery.
They are doing a blood test to see if my blood may be clotting before sending me for a lung cat scan due to the high radiation.
Thank you
Jacqueline
Hi Jacqueline – it is great to hear from you again, thank you for letting us know how you are. You are so right about the journey of healing having it’s ups and downs. I feel like I am in a major down right now (after feeling up for a little while).
I personally had pain at 6 months, 8 months a year and even now at about 18 months. The pain has lessened or comes much more infrequently than it did at a few weeks or a few months, but I still get it. I don’t know where you are, but I am in Ohio and we recently also had VERY cold weather and my lung was hurting when I was outside and tried to breathe – I was not even doing anything physical. So while I am not a doctor, I think what you experienced would be very normal based on what I have experienced. Exercise has also impacted my lung. I will post to the Facebook Page (still working on getting a forum going here) for some feedback and let you know.
Thanks again for writing and take care of yourself. Wishing the best for those test results.
Hi Sara
Thank you very much for your reply. I really thought life would be normal again after a fee months. I have been able to come off Fragmin blood thinner and have been moved to baby aspirin. No clotting order discover, I am so thankful. I continue to wear my compression stocking and they told me if I fly I am to inject myself with a dose of Fragmin since it’s still under a year. Thank you for this wonderful site.
You are so welcome, Jacqueline – anytime! I hope you continue healing as you have and I wish you well in your recovery from here on out. Keep in touch too and let us know if you need anything. 😉
I am coming up on the anniversary of my massive pulmonary embolism in late February 2013. I am so happy to find your positive and helpful blog. When I first got out of the hospital, I had in my mind that the recovery would take six month because I knew my body had been through a lot. I have always been a healthy person and know my body generally does a great job in recovering from illness. Then I got to the six months point and realized it was going to be more like a year. And, then the heart palpitations started. It turned out after all the standard heart tests and even heart catherization, the culprit was lack of potassium. I had done such a great job of cutting Vitamin K out of my diet since I’m on Coumadin, that I lost the potassium I needed as well. So, this past five months has seen progress of sorts with getting the IVC filter removed since it had done its job and all the heart tests. I think the IVC filter removal and the heart catherization procedures took a lot of energy from me and probably extended the recovery period for me although it is great to know how my heart is doing. Now that I’m approaching the anniversary of the PE, I’m seeing that it is a very slow process and to just be kind to myself about taking naps and acknowledging the fatigue and heart arrhythmias and lightheaded at times. Someday maybe in another year perhaps I’ll wake up one morning and say hey I feel I’ve recovered. It is also possible that I’ll never get back to the previous normal and also possible that if I lose weight and exercise that I may even get to a better normal. Lots to think about here. I am a bit overwhelmed by the ramifications of my mortality which is probably why I stay up so much of the night. And, I am writing a case study on my hospital stay as one way of addressing those concerns. There were lots of problems in missed diagnosis and under assessment of the situation that could be much improved by policy changes and training. For example, in his STAT phone call on the CT Scan the radiologist must not have said massive to the Emergency Department doctor although his report stated massive bilateral when it was finally posted to the medical record 15 hours later about the time I was finally in the ICU getting tPA. And, because this ED doctor wasn’t aware of the right ventricular dysfunction because it wasn’t clear in the notes of the first ED doctor who had left when his shift ended I was sent to spend the night on the hospital floor in “fair” condition. I am quite interested in the comments in this blog which talk about the lungs and heart needing time to heal at the vascular/cellular level. That makes a lot of sense to me. Bits of the busted up clots could well have gone into the small recesses of the lungs’arteries and possibly created scar tissue. I understood about the heart and recovery from the strain and dilation, but I really haven’t been considering the long term implications on the lungs and their recovery. I am going to see if I can find out more about that. Perhaps I need to see a pulmonologist. I think I have all that I can get from the cardiologist that is useful. I don’t think any of the doctors I’ve worked with have much of a clue about the extent of the recovery I’m going through. I so wish I had a doctor like Sara had to guide me through this process. Thank you, Sara, for sharing all this. It already feels very supportive and caring for me.
Hi Cathy! I am so glad you stopped by and thank you for sharing your story. Welcome!! We’re glad to have you in our community.
You have raised so many things to talk about, and I am glad to talk to another person (as many are here) who is as interested in this topic as I am. I find I learn a lot by talking to the people, which is one of the reasons I started this site – so we could start talking about it, learn from and support each other in diagnosis and recovery. Thank you for being a part of that for I feel everyone, including you, has something valuable to contribute.
As I said, I know one of the first things my doctor explained to me was that recovery could take up to a year. Particularly for me because the clot went from my left leg, through my heart and into my left lung. He said the micro damage to my heart and lungs could take longer to heal than say, a clot that stayed on the right side.
I think it is interesting that you are working on a case study and I hope you are able to share that with someone when you are done. I think we need to talk more about hospitals, misdiagnosis and care of DVT/PE patients, you know. I feel like I was very. very lucky with the doctor I received and I know a lot of people have not found the support I have, which makes me very sad and concerned. There is so much conflicting information out there, if you are a new patient or a patient who was not given much information, it is very hard to know what to do, what to expect and what the truth is!
Being faced with our mortality is so hard. I struggle with it to this day, even 18 or so months out. I can’t sleep some nights and other days I am so tired it is hard to get up and live a normal life. I know how you feel and you are not alone! I want to thank you again for stopping by and for your kind words, and I hope you will not be a stranger. Take care and talk to you soon.
Sara, Thank you for your quick response and welcome! I appreciate it very much. Yes, there is so much to talk about. I plan to send my case study as a presentation on DVDs to the hospital top administrators and the hospital Board. It has been an extremely interesting detective story to unravel. And, I believe my recommendations should be very helpful. I encourage everyone to get copies of their medical records and study them.
From your comment, an anatomy lesson may be useful to everyone. And, I am not a medical professional so please check this out for yourselves. A clot in a vein in either leg (left or right) that breaks loose to become a embolus travels from that vein up into the femoral vein of that leg. The left and right femoral veins join together in the groin and flow into the inferior vena cava. So ALL emboli from both legs end up in the inferior vena cava. That’s why the IVC filter, the catcher’s mitt for emboli, is placed there. The only path to the lungs from the IVC is through the right side of the heart entering the right atrium, then down into the right ventricle and out through the main pulmonary artery. The main pulmonary artery branches into the left and right pulmonary arteries and then branches into smaller and smaller arteries. A very large embolus gets stuck in the main pulmonary artery while smaller ones may continue further into the lungs until they reach a branch that is too small for them to continue. So an embolus from either leg can end up in either lung and all of them go through the right side of the heart! I carry around a picture of my CT Scan showing large emboli in both the main and distal arteries. That is my constant reminder and motivation to get up from my computer every hour and get my legs moving!
I am reading through ALL the comments in this blog because each story is so real and meaningful for me. I thank all of you for your sharing.
The question I meant to ask after the anatomy lesson was why would it make any difference if the PE “stayed” on the left vs. being on the right? Both have to go through the heart.
Also, to clarify about the heart palpitations. With a 24 hour Holter Monitor test I had 12,000 PVC’s — that’s an average of one every 6 heart beats. When I had the heart catherization the cardiologist noticed my potassium was at the very bottom of the normal range and had me drink potassium before the procedure. That is what made me realize that my efforts to cut out Vitamin K foods were causing hypokalemia by cutting out the potassium as well. And, I love spinach. The nutritionist told me to be consistent with Vitamin K not necessarily to cut it out. Nevertheless, the potassium is incredibly important for electrolyte balance which causes the ventricle cells to contract and pump the blood. So, I’m back to eating spinach and bananas and the PVC’s went away within a few days almost completely. Will see what affect it has on the INR and the Coumadin dosage.
Thanks so much again for providing this support for all of us.
Hi Cathy. That is a good question and one I am not sure the answer to. I know on either side, the heart can be damaged, but for some reason he indicated that a PE on the left side of the body was “worse” in terms of micro-damage, including in the heart. I will have to follow up next time I see him and ask why or ask for clarification. Perhaps it depends on the path the blood flow takes? All interesting things to think about, I am looking for a video on blood flow now.
In response to what you said about Vitamin K, I was never told to cut it out, only to remain consistent. If you search Vitamin K on this site (top) you will find my post on it, if you haven’t already. I feel that is it a very sad misconception that people are told, often by doctors, to stop eating Vitamin K because that can be very dangerous, as you know. I actually take a Vitamin K supplement, which has helped me to stabilize my INR levels when nothing else would.
Again, I am so glad you are here to share your story and information. The more we can share, the more we learn too and that is what this is all about! Talk to you soon.
Hi Sara and Cathy L, I too love spinach, but after eating far more raw spinach in a salad, my INR dropped and I stopped eating it. Pleased to hear that regular amounts are the best option… not binging!!! Also you’ve given my another possibly for my palpitations, ‘Hypokalemia’, so will try increasing my potassium. I take warfarin and one of the side effects is rapid heartbeat or palpitations, so either may be the cause. I developed this symptom this past week, two weeks after being discharged from hospital.
I have multiple bi-lateral pulmonary embolisms which caused some heart damage. The exhaustion and pain is tough, although I have almost normal, although short-lived energy ‘patches’ in my days, but the racing heart is accompanied by a almost total inability to exert myself in any way. I have Factor V Leiden, so I’m probably going to be on Warfarin for a long time.
I was sent home without any information on how to cope, except from being told to get my friends and relatives to help me with chores etc. I’m 66 and also have mild emphysema, a lung disease which reduces your breathing functions.
I live alone and although my son offers to help, he comes over with my daughter-in-law and 3 year old son, takes me to the supermarket, buys takeaways, then they leave me with the dishes and mess from their visit. He sees me looking reasoning healthy (although I’ve aged 10 years in the last month) and I can’t bring myself to whinge about how badly I’m doing. They both work full-time and I know he doesn’t have much free time.
Paying for help isn’t an option for me. I have a friend who did a little cleaning for me when I first came home, but it was a oncer.
I am so pleased to find your website, Sarah. I feel the medical community needs to be talking with patients about what to expect after being sent home.
Hi Anne, Glad you found this site. I know how relieved I was to read this blog (thank you, Sara!) and know better what to expect and that others were experiencing much what I was. Families tend to not understand the level of exhaustion that many of us go through especially if the PE was bilateral and severe. I would encourage them to read some of this blog so they get a better idea of what you’re going through. Especially in bilateral PE’s even the doctor’s tend to underestimate the recovery time. One to two years is not unusual. The best new patient information I’ve found at: http://www.clotconnect.org/healthcare-professionals/patient-handouts That is wonderful that your son is helping you so much, but I wouldn’t think it would be too much to expect them to clean up their messes before they leave. My 66th birthday is a week from today and I feel very fortunate to be alive. I’ve learned to listen to my body and give it rest and the right balance of enough exercise to help my recovery and not so much that it wipes me out for a day or more. Do be patient about the heart palpitations. Your heart has been through a lot these past few weeks and may just need some time to recover … and the heart is an organ where much damage is reversible. The heart is the organ most stressed by the pulmonary embolisms. I bought a pulse oximeter when I first got out of the hospital and it was very useful in figuring out what was going on with my heart. In my case it was PVC’s causing skipped beats. I had a heart cathererization procedure to see what was going on and basically the cardiologist said the heart just needed more time to recover. But, he had had me drink potassium just before the procedure saying it was low. That made it dawn on my that my skipped beats might be hypokalemia. I started eating bananas to see if it would make any difference and within three weeks the PVC’s were totally gone! But, Anne, the hypokalemia tooks about six months to develop after leaving the hospital because I had cut out the potassium with the vitamin K. My first battle in the first weeks of getting out of the hospital was with thrombocytopenia — low platelet count — which can be induced by the heparin. Check with your doctor and keep asking questions until you get the answers you need.
All my best wishes to you. Cathy
Hi, just wanted to start by saying I am so happy to have found this site. On January 2, 2014 I woke up with a pain in my side which I thought was probably caused from sleeping in a weird position. However, two days later I was in extreme pain and was having trouble taking a deep breath. I went to an Urgent Care center where they took X-rays of my chest and told me it was probably a muscle strain, but that they thought I should hear to the ER for a blood test and CT to rule out a PE. 3 hours later after the testing at the ER I was told I had a PE in my right lung. I remained in the hospital for four days and was sent home. The only instructionsor info I was given was to take my meds Xarelto and an antibiotic and to follow up with my primary care doctor in 1-2 weeks. My blood test hasn’t come back, but at the hospital they seemed to think it was most likely caused by birth control pills. I followed up with my doctor even though she didn’t have my results because I was allergic to the antibiotic perscribed. She seemed to not really know what I was supposed to do for future follow up care. She thinks I will need to see a pulmonologist? I’ve read posts of different types of PEs and people seeing pulmonologists and hematologists. It’s scary just being sent on your way with no actual instructions for follow up. I’m just wondering what type of doctor I need to see? It’s been 18 days since I went into the hospital and I am still exhausted and suffering from sharp pains in my back. Any insight anyone could give me on where/what to do now would be extremely appreciated!
I’m sincerely sorry to read your story and offer you “welcome” to this unique club. During my recovery from DVT and now, in my current recovery from PE, I find that docs seem not able to give you a definitive answer regarding what to expect and how best to care for yourself (outside of medications). Continue asking questions and, if you are able, see a hematologist who can test for clotting disorders. A cardiologist might also be a good idea. At the least, you may gain more peace of mind. Hope this helps.
Hi Estelle. Thank you and I am glad you are here to be a part of this community! Your story is similar to mine in that I took a nap on a Saturday and woke up a few hours later with a pain in my side that was also caused from sleeping wrong. I also had a pain behind my knee that I thought was due to a running injury or over-activity. By the end of Sunday night, I was in extreme pain and could not breathe laying down or speak in full sentences.
I am sorry it sounds like you are having trouble figuring out what is going on – I will try to help if I can! When you say you got testing at the hospital, did they test for autoimmune and genetic clotting factors? The doctors in the hospital originally thought my clot was caused strictly by birth control, but my PE was so severe, a hematologist was called in who determined I actually have antiphospholipid syndrome (APS), which is an autoimmune clotting disorder. So, I would definitely recommend you get some follow-up testing if they did not test for that. A hematologist could perform these tests with a blood draw.
I see a hematologist for my follow-up care (the one from the hospital) and he also monitors my INR and medication. My general practitioner said managing Coumadin was not something he was comfortable doing. He is who I see in regards to anything relating to my lungs or leg (as in follow-up scans). I did briefly see a rhuematoloigst who ruled out that I do not have Lupus at the present time. I never saw a pulmonologist or cardiologist. It has been my experience that you should see a hematologist to monitor your blood and medications if you are going to be on blood thinners for any length of time. If they find a clotting disorder, you would definitely want to follow-up with a hematologist.
I know Xarelto does not need monitored like Coumadin does, but if your PCP does not feel comfortable with your care this matter (like mine) and you are able, it would be my advice to seek out a hematologist, at least until you can determine what caused the clot for sure and also so you can straighten out and get care for any follow-up issues that may arise over the next few months.
Thinking of you and thank you for being here. Take care!
I had a P E in November and I am at home now. I am on about 15 meds, I have approx. 9 doctors I am/was seeing. I have oxygen which I am on most of the time. The doctors have run all sorts of tests to see why I am still feeling as if an elephant is sitting on me. They don’t know why I am desaturating at times. I feel lousy and I am stuck in bed a good part of the day everyday. It is most depressing. Reading about others having a long recovery is some help, but still. a year or two to recover? I am going to UCLA for some specialist next week. This blog has been a help to me. I am a nurse and not being able to take care of others and being stuck in bed is horrible. I see so much of myself in what others have written. Unable to do many activities etc. I am on blood thinners too.
Hi Sue and thank you so much for being here. Welcome!
I was also on oxygen when I left the hospital and could not do much of anything for about a month. I was on oxygen for a month before I was stable.
I know it is hard to hear (I was shocked when I heard), but yes, I think it really can take 1-2 years to fully recover. And that is not to say the whole 1-2 years will feel like you do now. I feel much better at 19 months than I did at 12 months than I did at 6 months. It’s small things that make a difference and let you know you ARE improving like being able to take a walk, go to the store or not go to bed at 6 in the evening! I did not want to believe my hematologist when he told me it was a long process, but over time, I started to realize it and I am glad I had that knowledge beforehand because I have been trying my hardest not to put any unrealistic expectations on myself for you should feel back to normal by X date. Of course, recovery also depends completely on the individual and maybe for some, they would recovery quicker or longer than that.
I can relate to you and how you are feeling, and please know that here you are not alone! I hope you find some answers at UCLA, maybe as to why you clotted or more what your recovery will entail.
Thinking of you and wishing you the best. Take care.
I am a nurse, and on top of my P E, I have had a spinal fusion, removal of some of the spine fusion hardware to decrease pain( didn’t help much) a torn A C L and maybe asthma. so my job prospects are zero right now and probably will continue to be zero. I have good days and bad. I feel so crappy most of the time. I spend most of my days in bed. I ama depressed and I have fibromyalgia on top of it all.I am borrowing a wheelchair so that I can go to UCLA. that is depressing. so is having to use a shower chair because I get so out of breath standing in the shower. The medical bills keep coming. I have no income now since disability ran out. I have applied for social security disability. the paper says it can take 180 days for a decision. terrific. my hubby is great , but I support him. I am the bread winner and now nothing is coming in. I am scared to death about the finances. I have enough money to keep me afloat for quite some time, but it is scary. it is depressing that my nursing career is over now, most every fun thing or even everyday thing is almost impossible due to my health. cannot tell you how many times I wished I wasn’t here anymore.
Sue, I so feel for you and your situation. I don’t know if this will be helpful to you or not, but at least know that I care and have a lot of empathy for what you are going through. I am an engineer who is always trying to solve things and come up with solutions. I did think of one way you could possibly continue using your expertise as a nurse or at least give you a path to explore that might lead to something positive for you. Many families hire a medical professional to sit with their loved one in the hospital who makes sure the patient is getting the care they need and the right kind of care. I have a friend who is a retired RN who has accompanied me to the ER and to procedures in the hospital. I tell you it is a really powerful statement to bring your own RN with you! I have given her permission to see all my medical records and to be an emergency contact for me. And, considering how much the hospital missed when I had the massive PE literally jeopardizing my life, I am a big advocate of having someone there for me who knows what is going on and what should be going on and can talk to the medical staff in their own language. My friend also does legal medical consulting where she helps lawyers analyze medical records. These are not ambulance chasing lawyers, but lawyers who help set up trusts for people with long term disabilities etc.
Sue, I know what you are going through. I think the depression is the hardest because you start to lose hope. Sometimes I have passing thoughts of wishing I could go home to heaven but I don’t want to throw the gift of life away. The Christmas things are still in the kitchen. Hang in there. Can you seek financial help from the places you have gone to? You have a great support group here. Can you talk with your husband about your feelings?
I can relate to your fear about the future in terms of finances and how you are simply going to survive, Sue. You’re not alone in that. I live it everyday. I lost my job as a result of my PE and have not been able to find work since. That job was my career and I will never get that back because I can’t go into that line of work again after all I have been through. There are days when I simply do not want to get of bed for fear of what will happen next or sometimes, worse, one more day of the same, horrible thing. You’re not alone, as you can see. Thoughts to you and your husband.
And it goes without saying, we’re glad you are HERE! 🙂
well, we went to UCLA. so far nothing. doc has to go through the mountains of paperwork I gave him from various docs, hospital reports etc. we go back next week. My brother wanted me to go to see shrink. I have thought about it but there are several problems. if I start talking for a few minutes, I end up with no voice for some reason. almost every time. then I get very short of breath and chest pain. so how are you supposed to talk to shrink when you really cannot talk. then I really don’t want to spend money on it on top of it all. I am hoping that I can get this breathing problem under control and then think about the a c l surgery I am probably going to need.or figure out how to get a job. I am so messed up. between my back the knee and the breathing problem, no one will hire me. I am going ‘inactive’ on my nursing license which is so depressing.i need to lose about 40 pounds which is almost impossible with my lack of mobility , pain and breathing difficulties. I am praying the doc will have an answer for me next week. I am so sick of sitting in bed. I could just scream.
Hi Sue. I can relate to how you are feeling. I am sad to hear you don’t have any answers from UCLA yet, but I am hoping you hear something in the next few days as they go over all of your information. What do they think may be wrong with your breathing? Is it strictly related to the PE? I can’t imagine your frustration with not being able to carry on a conversation along with everything else that is going on.
Over the past year (since my PE), I have never felt more messed up in my life – no job (It was supposed to be my career and lost it because of the stress of performing the job with recovering from the PE), not able to run (my favorite form of exercise that kept me going when nothing else did), alone (I feel like no one understands a lot of the time), sick of lying around (it just hurts too much to get up physically and to think about facing another day), in pain (physical and emotional) – yes, I know exactly what you are describing. And I think many others here can relate. It’s small things like reaching out to fellow survivor, reading a book, calling a friend or family member or cuddling with my dogs that got me through when it seemed hopeless. I have to believe there is something better for all of us out there at the end of all of this. We were given this life for a reason, and I guess I hold on to the hope that there will be an end in sight some day.
I just want to say to you – you are here talking about it with all of us and you are not alone.
Keep us posted for sure.
thank you for your reply. Today I woke up with my left leg feeling like I pulled a muscle. I didn’t do any activity that I can think of where I might have pulled a muscle. Being paranoid, now I wonder if it is a DVT. no heat, no swelling, no lump. I don’t want to go to e r. I had symptoms like this about a month ago and my doc told me to go to e r. well, I did, and thank god it was a false alarm. now I am back wondering the same thing. do I go to e r. I don’t want to spend the money if I don’t have to. I think I will watch and see. is this a dumb idea?if I tell my doc, he will send me to e r again
Hi Sue. The only thing I would say to you is my DVT felt exactly like a pulled muscle and I did not go to the ER for two days, which is when it turned into a PE and I almost didn’t make it. I had no heat, swelling or lumps. I also understand not wanting to seek medical attention because of the cost, I completely get that because I have been there myself. My doctor would probably tell me to to go the ER if it was after hours or I could not go in to see him and I described this pain.
I wouldn’t wait too long, if you have any doubts, can you at least go to an Urgent Care or call an on-call doctor? I would rather be safer than sorry, in spite of the costs. Keep a close eye on it and take care of yourself. Thinking of you.
Before I jump into my story, I want to thank the author of this site and all of those who have contributed your experiences dealing with recovery. This has been a valuable resource for me and I’m sure for many of you in helping to understand what dealing with the aftermath of a pulmonary embolism entails.
In late April of 2013 I was sitting for several hours at my computer on a Friday night working on a project. At the end of the night I noticed that I was having pain in the calves and behind the knees of both legs. At 66 years of age, aches and pains are a part of daily life and another new one is usually just assumed to be something to put up with. By midday Saturday though, the pain was worse and I had pain and pressure in my chest.
Chest pain is nothing new for me. I had a heart attack in 2000 that started with chest pain, resulted in stents and since then many episodes of chest pain that have sent me on more trips to the ER than I can count. I also suffer from frequent bouts of acid reflux, so chest pain can be very confusing, but always something to not be taken lightly, given my history.
Every visit to the ER ends up the same. All of the standard tests are run and I get sent home 6 – 8 hours later with no conclusive diagnosis. I’ve been through more treadmill stress tests than someone who has a gym membership, but again all showing no abnormalities.
As a result, I’ve gotten to know my body pretty well and can usually tell when something is to be concerned about. This new pain in the legs and chest was something different, so once again I went to the emergency room.
After all of the initial heart checks the doctors sent me for a CT scan, an echo cardiogram and ultra sound tests after which I was shocked to hear them tell me that I had multiple clots that started in my legs and traveled into my lungs. The attending doc told me how lucky I was to have listened to my body and come into ER. He said that in many cases the way a pulmonary embolism is found is through an autopsy. A sobering bit of information to say the least.
I spent the night in the hospital, went home with self injection kits for heparin shots and was started on Warfarin. Beyond that, NO information was given on what exactly had happened to me or what to expect. In my mind I assumed that I would be back to normal in a matter of a few weeks and all would be good
That turned out NOT to be the case. Now, some 9 months later I still fight daily fatigue and don’t feel like I have gotten much better and on some days, feel like it’s getting worse rather than better. I still can’t go very far on my daily walks, still have chest pain and generally don’t feel “well” most of the time.
Every now and then I have an anxiety attack, I assume due to worry about immediate symptoms that seem worse than normal and won’t go away. The times I get most anxious are when I’m home alone for any extended period. I’m married but there is just the two of us in our household. Sometimes when my wife is away at a church or volunteer function and I feel unusually “un-well” I get a little scared and anxiety feeds upon itself. By the time she gets home, I’m a minor train wreck. This happened last night and I was awake all night not able to shake off the worry. I can’t ask her to stay home all of the time and “babysit” though so I need to learn to not let anxiety work on me. Easier said than done.
I could go on, but this is already ridiculously long. Sorry for that. I just wish my doctors knew more about PE recovery and/or that there was more information out there somewhere to help know what to expect from all of this. Since my PE I’ve scoured the internet looking for new information and that’s how I found this site. Again, thank you all for your stories. Just knowing that I’m not alone in this is helpful. I have sent links to any websites that talk about PE recovery (including this one) to my doctor and he thanked me and said they were helpful to him also.
PE stands for more than “pulmonary embolism” It also stands for “physical education” and it’s helpful that we can all help educate each other.
Many of the stories here are from those who had a more intense experience than mine, but I’m really beginning to feel like I may never fully recover from this. I hope I’m wrong but it sure doesn’t feel like I’m making much positive progress.
Hi Rob. Thank you for stopping by and for sharing your story here. Welcome. Thank you also for your kind words about the site. I was hoping to create a community where people who have been through a DVT and/or PE or other blood clot could come together, share, learn and find that we are not alone. I felt so alone in the beginning, I don’t want other people to feel that way.
I will say the things you are felling now are, as far as I know, still very normal and I know how difficult it is and can be. I am 15 months out for my PE, and I still have days where I feel pain and fatigue more than anything now. I also fight daily anxiety and sometimes panic attacks as well so I don’t think you are alone in that either.
I also feel that most people are discharged with no information about what to expect in this recovery and you are right when you say it is very frightening and sometimes the lingering psychological and emotional effects are what other people don’t talk about. I, for one, can relate to your fear of being alone as I have a similar fear of driving alone (in the beginning it was anytime I was alone). I am terrified of being in a car accident and no one is able to speak for me to let medics know I am on a blood thinner. I have not gone places due to my fear. It is very debilitating and the psychological effects of a PE is something I would like to learn more about and share with all of you here.
At 15 months out, I can tell you I still do have sleepless nights too worrying about what happened to me and what might happen to me in the future. I think it is a very real fear we face as I was discussing with another person here – our own mortality. I was not prepared to face that and now that I have, it keeps me up sometimes. I can relate to the way you are feeling, please know you are not alone!
I have days where I feel like my “old self” and other days where I feel like I have taken a thousand steps backwards. I think it comes and goes and I know for me, at 9 months, I was still very much in the midst of recovery and not feeling well more than I was. I just wanted to share that with you. I will be thinking of you and sending warm wishes to you and your wife. This is a hard thing and thank you for being here to share with us.
Keep in touch. Also, thank you for passing information you find on to your doctors! I hope someday they can realize what we are going through and maybe there can be some sort of “official” guidance for others who have to suffer through this.
Rob’s post makes me wonder about anxiety attacks versus “the feeling of doom” and what others have experienced. In the hospital, I was “stable” if I remained still and on my back. If I turned my body even a little such as a transfer from the EMS gurney to the ER bed or sitting up just enough for the X-ray plate to be put behind my back, my breathing would become much faster and labored, plus chest pressure, plus this “scary” feeling. I found out later the “scary” feeling is known as the “feeling of doom”. It is an actual metabolic survival trigger that is the body’s way of telling you you are in BIG trouble — life-threatening trouble. It has been likened to an anxiety attack although it is quite distinct. I was wondering if other people experienced this “feeling of doom”.
I also want to ask if others had increased symptoms of their PE with movement or tilting like transferring from the CT Scan platform back to the gurney. I even had a seizure-like episode (aura, extreme nausea, loss of consciousness, convulsions) triggered when I was transferred from ER gurney to the hospital bed. My theory is the blod clots moved a bit creating more blockage of the arteries so even less oxygen got to the brain and other organs. My blood pressure went to 80/18! But as soon as I lost consciousness and went flat on my back, my body started to recover – and the clots went back to their original less obstructive position. This is quite different than SOB with Exertion which is what is commonly noted. When you look up “SOB with exertion” they talk about being breathless after running half a mile. The EMS techs noted it correctly 4 times in their report even noting it with the Chief Complaint. The ER nurses and doctors missed it totally leading to life-threatening under assessment of my stability. I’d like to hear if this was unusual occurrence or not even for a massive bilateral PE. And, if it is common for the emboli to still move around even when they’ve “lodged” in the lungs.
Thank you Rob for sharing with us. I believe so many of us are anxious to varying degrees because of what we went through. You are definitely not alone!
Thank you for this info, Cathy! I have heard of the “feeling of doom” as you describe as being a symptom of PE because of yes, the actual metabolic response. This was not a symptom I experienced personally, but I would like to know if others have.
The only thing I can equate to clots “moving” was that I could not breathe when I laid down, but other than that, I did not feel any different (other than just plain sick) no matter how I moved, in or out of the hospital. I am not sure if clots can move per say once they are lodged, but I do know they can break off in pieces from where they are lodged and cause more problems.
How horrible that the assessment of your stability was compromised! Thank you for being so open here and sharing your experiences with all of us.
I had mine in November 2016 followed by a year ago with reactive arthritis and my legs right know are hurting with no financial support. Praying I win the lottery. I have had the dry cough and lack of energy and the DR thinks it will go away and need to work. I have at the odd times had pains in my side and I feel its all related.
Thank you, Sara for putting this together and everybody else for contributing. I feel somewhat comforted by reading about others’ experiences (especially the ones with happy endings). I also feel like I understand my own experiences and feelings better when I write about them. So, here’s my clot story.
QUICK FACTS
I’m 37. I live in Lake Tahoe, where I moved largely to ski and mountain bike. I’m married and have two children (7 and 4) and a young boxer. I’m in good shape and have a fairly clean family history. I’ve been healthy all my life.
MY FIRST DVT IN 2010
When I was 34, I had a nasty mountain biking accident in Canada. I broke my wrist and ultimately discovered a DVT in my left leg a month later. I spent an evening in the ER, but little more. After seeing a number of doctors, the consensus was that the clot was ultimately caused by impact of the fall. I was on Warfarin for about 6 months, during which I still biked and skied but dialed it back a bit. When I went off it, I more or less assumed I was done with blood thinners and DVTs/
MY SECOND DVT IN 2013
This last summer, I had an even greater mountain biking accident closer to home. This one got me airlifted to a nearby trauma hospital where I spent a few days. I suffered a lacerated liver, bruised kidney, punctured lung, cracked rib, and a concussion. A month after I was discharged, I found another DVT, this one in my right leg. I was again placed on Warfarin, although I eventually switched to Xarelto. Although my blood tests came back negative for the 5 standard coagulation disorders (e.g., factor 5 leiden), a local hematologist thought I probably had an unknown/untestable blood disorder and said I might have to be on blood thinners for the rest of my life.
While I knew this was a possibility, it was still a huge shock given my lifestyle. It was therefore very stressful for me. I love mountain biking (although even I recognize I can’t continue riding as aggressively as I did before) and skiing, which I do a lot and in what many might consider “extreme” conditions. A life of blood thinners would radically affect my lifestyle, which I cherish.
Ultimately, I saw another hematologist at the Stanford Hematology Center. To my great relief, she said that the second DVT was also likely the result of the second biking accident. She recommended that I complete three full months of blood-thinner treatment and then try going off them. I stopped taking Xarelto in early December 2013.
MY PE IN JANUARY 2014
I go to the gym a few times a week and have done so for a long time. I usually begin with a 10 – 30 minute warm up on the elliptical machine before lifting weights. One day in late December 2013, I started my warm up and just didn’t feel right. I felt tired and fairly out of breath only two minutes into it. It was a little worrying, but I thought it might be fatigue or the outset of a cold or something. I knew that shortness of breath is a symptom of PE but hoped that wasn’t it. I had been mountain biking only a few days before and generally felt great lifting weights the day before. I felt a little bit better during my next visit. And then I felt about the same the visit after that. I had also noticed that I was a little out of breath when climbing the stairs to my work but wasn’t sure if that wasn’t an actual thing or something psychosomatic.
So, I went to my general physician. He had me to a d-dimer at the lab that morning. That afternoon, he called me at work and told me to go to the ER for further testing. When I did so, a CT scan revealed that I had multiple emboli in my chest. An ultrasound of my legs also revealed multiple emboli in my legs. I was told I’d probably have to be on blood thinners for life, a conclusion for which my previous DVT had already prepared me. I spent one night in the hospital before being discharged with a renewed prescription for Xarelto.
That was two weeks ago. Since then, I’ve seen my general physician, who affirmed that I’d probably have to be on blood thinners for the rest of my life, but he didn’t have a diagnosis as to what caused the clots. He also referred me to an oncologist, who I’ll see next week. It seems unlikely that cancer is causing the clots, but it’s something that needs to be looked into. Also, oncology and hematology are essentially overlapping disciplines.
CURRENT ANXIETY
So, here I am now. The past week and a half has been rough. Physically, I think I feel okay. Having read most of the stories here, I feel somewhat fortunate in that my PE and its after effects don’t seem so bad. I was only in the hospital for a day and can move around freely without labored breathing, pain, or fatigue. Occasionally, I feel some slight “pressures” around my chest—sometimes near the breastplate, sometimes on either side of my chest near my armpits. But they are fleeting and not exactly painful. But mentally . . . I’ve had a lot of anxiety.
1. I’m worried that I have a fatal disease/condition. My doctors said cancer is unlikely given all the circumstances. Nor, to my knowledge, are most clotting disorders fatal if treated. But this doesn’t stop me from worrying. This is part of the problem with an undiagnosed health problem—it could be anything (or at least it seems that way).
2. While I’m not in physical discomfort, I feel hyperaware of my physical state. Is that a slight pressure in my chest? Do I feel a little queasy? Is my pulse too fast? Honestly, it’d be hard for me to give straight answers. Some of these things may actually be symptoms of my PE, some may be psychosomatic, and some may just be the humdrum sensations of the human body that most people ignore. Unfortunately, the combination of anxiety and hyper physical awareness feeds on itself. One seems to fuel the other.
3. I have felt queasy and have suffered some loss of appetite. This feeling isn’t consistent. Sometimes I can eat fairly normal proportions. Other times I don’t feel like eating at all. I’d say that I’m eating about 70% of my normal amount. While, objectively, this is probably a result of the anxiety and stress, I worry that my loss of appetite might be caused by something more sinister. It’s been a bit better the last couple of days.
4. It’s somewhat hard for me to enjoy many things that might make me feel better. I feel like my life is in stasis. Until I have a more concrete understanding of what’s going on with me (and what the future holds), I sometimes find it hard to enjoy things or look forward to things in the future. I had been planning a backcountry ski trip to Kyrgyzstan next year, (which I’d still like to do if my only limitation is being on blood thinners). But it’s not something I look forward to because I don’t know what’s going to happen with my health in the next 12 months.
I’m not saying I experience these emotions all the time. Nor do I claim that they are rational. But I’ve experienced them more than I’d care to in the past two weeks days.
Now, you might have noticed a substantial omission in my little list of anxiety stimulus—fear of spending the rest of my life on blood thinners. That’s because I’ve more or less made peace with this fact. Basically, my real fear is of an early death preceded by lots of time suffering in a hospital. Next to that grim (albeit probably remote) possibility, a life on blood thinners doesn’t seem so bad. Funny how that works.
How am I dealing with my anxiety? Four ways. First, my doctor gave me Xanax, which I’ve taken a few times. It helps. Still, I don’t want to become addicted to the stuff. And, ultimately, I don’t want to have to take Xanax at all. Second, I find that watching a movie with my wife helps. I lay on her lap, and it feels consoling. Third, I’ve scheduled the appointment with the oncologist sooner. I remember feeling some anxiety after my second DVT (although not as bad). But I felt a hell of a lot better after the Stanford hematologist told me I could discontinue blood thinners after three months. A lot of my anxiety is a result of the unknown nature of my problem. Fourth, and along these lines, I’ve been trying to learn more about PE recovery online, which is why I’m here. For instance, knowing that it’s common for PE victims to feel such anxiety afterward is somewhat calming.
WHAT DO I WANT?
I want the doctors to tell me that I’ve got some kind of clotting disorder but that I’m otherwise fine. I want to be told either that (a) I have a particular disorder or (b) I have an unknown disorder, but such unnamed clotting disorders are commonplace and shouldn’t cause fear. I want to fast-forward a few months to a time in my life when I’ve put this whole health issue anxiety largely behind me and am moving forward with my life. I can still have a very rich life on blood thinners and am ready to do so. Once I’m cleared by the doctors, I want to become as physically fit as I can. I want to return to the gym and to my outdoor activities with a vengeance. More than anything, I want to live a long, healthy life. I want to spend quality time with my wife. I want to go camping with my kids. I want to see them grow up, get married, and have children of their own.
Hi Frank! Thank you SO VERY MUCH for sharing so much of your story and yes – connect with Tim! 😉
I don’t know where to start as I feel I can relate to you in so many ways and have experienced so many things that you talked about. I must admit, your story brought tears to my eyes tonight. Thank you. I lost my mother unexpectedly in 2011 and when you mentioned the things you want out of life, it just hit home for me. My Mom did not get to do and see all the things she wanted to I am sure (even though I know she was at peace with her life) and it just reminds me of how fragile this life is and how we all really are still here for a reason. Thank you for reminding us of that.
I can relate to not knowing what is wrong tends to be worse than just knowing. My hematologist is also an oncologist and they checked me for everything under the sun early on, including cancer. You are right, hematology and oncology are closely relates, especially if dealing with blood cancers. As you may have read, I was found to have antiphospholipid syndrome, which is an autoimmune condition, and will be on lifelong blood thinners. At least knowing what I am up against makes a difference for me and while I may be on blood thinners forever, at least I know what I need to do to stay healthy. I hope you can find some answers too! I know how it feels to be without them. The physicians in the hospital originally thought my PE was due to birth control, but that just didn’t sit right with me. I am glad my hematologist was called in and found the APS because it helped me find the answers I was looking for!
I can also relate to feeling hyperaware of my physical state, which is interesting because all of my life I have been called a hypochondriac. Yet, when something was really wrong (my PE) I did not go to the hospital when I should have! I don’t think you are alone in feeling that. Even 15 months out, if I sneeze and my lung aches, I become instantly concerned it might be something. Back to what Rob was saying too, I have even shot awake in the middle of the night concerned I could not breathe again.
I don’t think you are being unrealistic in your anxieties and thoughts AT ALL! I am reading them again and just nodding my head yes, yes! I feel that way too. I know exactly where you are coming from – and I want to hear about that ski trip – we all do! 😉
I hope you find some answers in the coming weeks and please don’t be a stranger here. Thank you for sharing as it truly makes a difference.
Thank you, Sara, and everyone else who responded.
Sorry for the absence. I didn’t mean to “post and run.” It’s weird: sometimes I feel a deep-seeded need to talk about all this stuff. Other times, I don’t want to talk or think about it at all. After posting here, which felt a little cathartic, I wanted to take a kind of temporary PE mental vacation in which I wouldn’t try to think too much about it.
Anyhow, things are better on my end. The anxiety issues have gotten much better. It’s funny how anxiety can feel so physical. For the past four or five days, I’ve felt “lighter” and physically better in a way that I cannot articulate. The anxiety can be like a physical cloak that envelops the body in . . . er,
“bad juju.”
I saw a hematologist today and made a lot of progress. I don’t have time to articulate our discussion, but we have a possible “lead” on what might be causing the clotting. He thinks cancer is highly unlikely, which is always comforting.
Also good is the fact that, starting tomorrow, I can officially exercise again. He recommended that I start off lightly and see where I go from there. I’ll go to the gym tomorrow and probably ski for a couple hours on Saturday. (I’m well aware of the risks of skiing while on Xeralto.)
Thanks again!
Frank,
You may want to how you react to light exercise before skiing. I went from racing mountain bikes and being able to keep a 165 avg heart rate to barely being able to keep a 120 heart rate. Ready lightly at first.
Tim
That’s what happens when you reply on your phone while sitting on a plane. Meant to say Tread lightly.
Great to hear of your progress, Frank! I hope you continue to find answers with your hematologist and best to you as you get back into exercising. Have a great weekend to all!
Cathy – that “feeling of doom” is something that I have definitely experienced and is quite possibly a better definition of some of what I’ve described as anxiety attacks. It can be very scary. When I first had my PE and went to the ER I had fairly consistent pain – none of the changes from movement that you describe. Maybe your clots were indeed shifting and mine were more stable? How can we know without a medical professional to back it up with facts? Just another of the frustrations in the lack of information. I have dozens of questions but no one to ask who seems to have definite answers.
Frank – I too, am faced with learning to be on life long blood thinners. My clots were of a somewhat mysterious nature. I had no trauma from injuries like you had and nothing fit the patterns that can account for clots. Because the cause is unknown, my doctors seem to say that it would not be wise to ever discontinue thinners and take the chance of clots returning.
What is a mystery to me is that I went to the ER a couple of month ago and another CT scan was done that revealed that my clots had broken up and were gone. Yet I still feel no different. I can only assume that the continuing symptoms result from the internal damage done by the first clots.
For the first few weeks after my PE I really didn’t feel all that bad other than becoming quickly out of breath and fatigued after walking or working in the yard. Now though, I’ll be fine for a few days and then have a string of bad days when I feel like I’ve been run over by a truck.
Yes, Rob, from what my doctor said, the symptoms are resulting from the damage done by the clots and the trauma to your body. These are the things that no one tells us when we leave the hospital! You are describing how I feel when you say you have a string of bad days where you feel you have been run over by a truck – usually those are the days when I take a little while to catch up on comments here. But, I am okay with that, because I know the people here more than anyone understand.
Rob – May I please ask how your recovery from a heart attack has compared to this? I know my doctor described this has a “heart attack to the lung” when I was first beginning to understand what happened to me.
Thank you all for the questions and discussions you are raising!
Sara – in many ways recovery from my PE has been very similar to recovery from my heart attack. The months after my heart attack consisted of days with little energy, severe fatigue, periods of mild depression etc. The difference is that the heart recovery was measurable and I was able to see myself gradually getting stronger with each passing week. I eventually reached a point to where I felt that I was back to normal.
With the PE recovery it seems to be more up and down. Just when I think I’m making progress I have days where I feel like I’ve been sent back to square one to start over again. Now, as was said by someone else, I have a hard time knowing what normal is and what it should feel like. I just know that normal shouldn’t feel like this.
Thank you, Rob! I appreciate the information as I was personally wondering. The closest thing my doctor compares recovery from a PE to is a heart attack (for someone who has no idea or who is about go go through it, you know). I know what you mean about this recovery period – it is tough and full of ups and downs and sometimes it feels like we have taken 1200 steps back to 3 forward! Thanks for being a part of this community.
Frank – your post really nailed it. Thank you for expressing what I, and probably many others, are feeling. Your comment that you “feel hyperaware of my physical state” is exactly how I feel. And what’s the difference between that and being a Hypochondriac? Well, I’m afraid many people, including a lot of doctors, think they’re the same thing. But it’s so hard not to be hyperaware of aches, pains, and new physical sensations after having gone through something like a PE. Fellow survivors always says better safe than sorry, and get symptoms checked out. But it’s so hard to tell what’s a “symptom” and what is just a normal ache or pain. I hate not knowing what is “normal” anymore.
I was reading an article today about PEs, one written more for medical professionals than for us lay people. But I got really upset when I got about halfway through the article and the author (a physician) started talking about something he called “thromboneurosis.” Yep – he went on at length about the unreasonable and unfounded fear that many people who’ve had a PE have about suffering a recurrence. He said many people who have had a PE exaggerate future symptoms, because they’re afraid every new symptom means another PE. Well maybe if doctors did a better job of letting people know what to expect, of telling us what we’re likely to experience in terms of pain, discomfort, etc., we’d have a lot less anxiety about possible recurrences! And as a matter of fact, as Frank’s and others’ stories illustrate, a significant number of people DO have a recurrence. PEs can and do kill people. We were all lucky, we’re survivors. But we know we were lucky and don’t want to tempt fate again.
Hi Kathleen. I agree about Frank’s post – I am glad to read it and can relate! And thank you for pointing out about being aware and being a hypochondriac. I just said something similar in my reply to Frank, actually. I don’t think we are being hypochondriacs – although I have been called that throughout my life. It is hard for other people to know the difference, but as survivors you are right, we feel differently and I would rather be on the safe side after surviving a PE, you know?
I am HORRIFIED by the article that you read and that a DOCTOR said it?! What??? If you know where it is, can you please pass it on to me sara@bloodclotrecovery.net as I would like to read it. That is simply appalling and makes me sad because people may take it seriously and NOT talk about what they are feeling and yes, PE’s can kill people and you can have more than one and thinking like that is just not okay in my opinion. Unbelievable!
Sara – I will see if I can find that article again. It’s probably in my browser history. Yes, I was appalled too. As I said, it was written by a doctor, for doctors, in some medical journal I think. But it’s telling to know that’s how doctors (at least some of them) talk to each other about US, the patients they are supposed to help. thromboneurosis?! Really? There’s no such word (or condition) that I know of, but I’m sure the doctor who made up the term feels clever and smug for having coined the term.
Rob and Frank,
Howdy, and welcome to the show. The anxiety will go away but there are somethings you can do now to help, when you get anxious or depressed do something, anything to keep your mind from thinking about whatever it is that is stuck in your head. I was waking up at 3:00 AM and would be so anxious I couldn’t go back to sleep for hours. I found that just getting up and walking around the house calmed me down to where I could go back to sleep. I still see a therapist but just finding ways to clear my mind made things better.
I don’t want to cause more anxiety but some of us have side effects that will need other attention. Since being diagnosed I have been found to have an aortic aneurism, have had three recent episodes of coughing up blood and am on again off again with my ability to exercise, which is a huge issue with me. I haven’t really had the feeling of doom, just the inability to have control or ability to measure my recovery. But the best thing to do is be as positive as you can, realize recovery will be long but it is also ok to be upset when someone says you need to find a new way to live your life, I say fight like hell to get where YOU want to be again and let the world know it.
Frank you and I need to talk, I am an ex mountain bike racer who was just getting back to the sport this summer, in fact it was a crash in a cyclecross race that brought all this to my attention. My sister is also a doctor at Barton in South Lake Tahoe, I once rode the Flume Trail in under 3.5 hours out and back non-stop, that includes the climb.
Consulting with my doctors and my sister I have decided on warafin over the other drugs because in a worst case scenario it can be reversed. I have been found to have factor 5 liden and right now have a 90% chance of being on thinners for life and I don’t want to stop riding or racing. I have had no issues controlling my INR so getting my finger poked every two weeks is ok with me.
Right now I have a dream to race Ore to Shore in the Michigan UP in August and this keeps me going. The clots take a lot out of you but find something to keep you going and realize there are a lot of us out here so keep talking.
Tim – I really admire your positive attitude and your will to not let all of this hold you back. My only concern for you with such an active pursuit as mountain bike racing is the risk of even a mild injury while on blood thinners. I always have the thought of falling and cutting myself and not being able to stop the bleeding or worse yet, suffering internal bleeding. Be really careful!
You mention finding something to keep you going and I do have that. I play lead guitar in a band that I got into at the age of 60 (a life long dream) and it is something that I am passionate about. Even with that though, when bad days hit it’s really hard to ignore physical misery and just go on like everything is fine. I remember once sitting at the back of the stage just before the band was to start wondering HOW I was going to be able to stand up there and play for the next two hours. I did it though! I’m not sure how I got through it, but I did.
Thanks, Tim. It sounds like you’ve continued to bike on blood thinners. It’s something I’ve thought a lot about. I do about 70% trial riding and 30% downhill (lifts/shuttle big bike). I’m fairly fit and can hold my own in cardio, but my focus as always been in going downhill fast. I’ve done some DH, Super-D, and all-mountain racing, but I mainly ride for fun.
Anyhow, moving forward on blood thinners, I’m selling my DH rig. I’ve hurt myself too much on it. It sucks, but I’ll survive. But with trail riding . . . I’m not sure. I’ve never seriously injured myself riding trail, but, as you know, the danger is always there. It would be really, really hard for me to ride slow down a lot of trails, particularly if some grom catching me. (If I’m honest with myself, ego certainly is a factor.) So, the question I’ve been asking myself is whether I can continue to ride safely.
You point about warfarin is a fair one. I’d hate to switch back from Xeralto (and deal with weekly INRs and lovenox), but would happily do it if it meant I could ride/ski aggressively again.
Rob,
I do not fear bleeding, as long as your INR is good you would have to suffer a pretty serious incident for something really bad to happen. My hemotologist told me that there are two things I do he has issue with, riding my motorcycle and snowboarding. He gave me the talk about bicycling and racing but thought there would be ways to reduce the risk once summer time came. The biggest issue I face right now is the trip to the cardiologist and the aortic aneurism and the impact that could have on what I can do long term.
I am very used to working through injuries, I have had 10 surgeries in my life and two were the result of critical head injuries. But what I have learned with the PE’s is the harder you work the more damage you do. You really need to monitor your exertion and make sure you are not over doing your cardio system. I pushed way to hard in a hot yoga class a couple weeks back and that lead to one of the incidents of coughing up blood. Now I am on no exercise for another week , so don’t push to hard.
Hi Sara, well to start with, I seen my doctor and my blood tests showed my thyroid is a little high, not much and not to the point of needing meds. I keep battling with infections in the lungs. With my stomach disease the GERD is bad and I wake up with fluids backing up and then causing asthma, was just about getting better and then it happened again last night and back to asthma again. Still fighting pain in left lung and sometimes in the breastbone area. I also need to find out if I have a blood clotting disorder as their has never been a reason for getting blood clots. When on my Xarelto I have a high reading on the d-dimmer. I don’t know if this is normal. Just when I start to feel a little better (boom) I hit bottom again. The are switching me to warfarin as I can’t afford the Xarelto but the doctor wants me back on Xarelto as soon as I can get financial help around September. As it is said, “this too shall pass”. Praying for all.
Thanks for the updates, Jean. I was wondering how you were. I also have thyroid problems and I always have, and I don’t think I would be surprised if it’s dysfunction was somehow all related to the autoimmune (blood clotting disorder) that helped to cause my blood clot. I am convinced the thyroid does so much (as we know) and if it is messed up, who knows what trouble it could cause. I’ll post your question about the high D-Dimer because I am not sure about that, and I will see if anyone has any thoughts. I hope they can get some genetic and autoimmune tests run soon for clotting disorders as, like you said, that might provide some answers and at least let you know what you are up against. I have been on warfarin the whole time (since I was 29 at the time this happened) and the doctor put me on it since I will be on it lifelong and it has a lot of lifelong research behind it. I don’t think warfarin is “bad” (or good?!) per say it just requires more monitoring than Xarelto, although, of course I am concerned about potential complications of my liver down the line. Of course, ideally I would not be on ANY medication lifelong, you know. If you take Xarelto, there’s a program that will bring your costs down to as low as $10 per month. You just have to sign-up at their website (or call their 800 number) and then take the printout to your pharmacy. It will be good for 12 months, but must be done by 1/31/14. http://www.xareltocarepath.com/dvt-pe/xarelto-savings-programs I got this info from a reader, maybe in can help you now? Sign up in now if you can!
Hi Everyone,
Has anyone flown since they had their PE. I had mine back in July 2013, the doctors said I could fly and to just give myself a fragmin needle a couple of hours before flying. I am also wearing compression stockings as advised by doctors while flying. I take aspirin daily now, I just came off fragmin 3 days ago. The flight will be around 4 1/2 hours.
I leave February 3rd.
Thanks
Jacqueline
Hi Jacqueline. I flew for the first time since my clot this past December on a 4.5 hour flight. My doctor actually did not want me to do anything different, I just took my regular dosages of warfarin – no injections or anything. I did get up a couple of times during the flight to move and did leg/ankle/calf stretches while I was sitting. I was nervous, but all went smoothly. I also drank plenty of water before, during and after the flight. Also check out this post (http://bloodclotrecovery.net/six-steps-to-reduce-your-risk-of-dvt-while-traveling/) for some more tips. Have a great flight!
Jacqueline – thanks for asking the question. I’ve been wondering the same thing. I seldom fly but have been wondering what risks it might involve. In addition to sitting for a moderate to long period of time (which can be dealt with by getting up and walking the aisle) I’ve wondered if altitude might present any problems due to having shortness of breath.
Sara – thanks for your input and for that link with info on traveling. It is very useful.
Rob and Sara,
I am so thankful for this site, I felt fine when I booked then I started to worry. It’s been -32 degrees Celsius here, I live in Toronto, Canada. The cold is hard on my lungs and I was given a chance to go to the Caribbean for a week. I too was wondering about the altitude. I was told the clot in my leg hardened and other veins are pumping blood through. They said this happens and it won’t cause me to clot again. So many things I am learning about my body. I figured I traveled before by train and had no idea that I had a clot, at least now I know and have been on blood thinners and taking aspirin. I just read on Daily Strength blog that some people traveled a couple of months after their PE fine. I guess every new experience can cause one to wonder.
Thank you Rob and Jacqueline! I personally did not have any problems with altitude or SOB on my flight. I felt as normally terrified as I would on any other flight pre-PE. 😉 I think since the cabin is regulated it would not effect us unless maybe we lost cabin pressure and in that case we would get oxygen masks (oh, who am I kidding, I would just pass out right then and there anyway from fear) and hopefully be able to breathe. 😉 All kidding aside, though, I think you will be okay with altitude.
Jacqueline, my clots are also calcified as far as I know and per my doctor, you are correct when you say it should not cause you to clot again. It is really cold here too (Ohio), schools are cancelled tomorrow because of it. So, please enjoy the Caribbean for us ALL!! If you take the necessary precautions with what your doctor said, moving when you can, hydrating, wearing compression, etc. I think you will be just fine. I was generally surprised my doctor was not as concerned about me flying post-PE as I was!
Hi Sara,
Thank you very much, and I will take in some heat for all of us. Stay warm and I will write when I am back. Doctors are very helpful however people walking the same path really understand it at another level.
Grateful for this site, the community and the wisdom shared.
I’m glad to have found this site. I am one month and 8 days from pe diagnosis I had just had my fourth daughter 2 weeks prior and my husband and I had decided for an early Christmas present we would go to my hometown to show my family the baby the was only a five hour trip there and five hours back we were telling my family by and getting ready to head back home I had been having an achy feeling in my chest all morning but didn’t think much of it we got on the road and I was sitting in back seat with baby and my other kiddos the pain stated to become more intense and about 2 hours before we reached or home the pain had become unbearable but I kept telling myself ill just stick it out till I got home my husband couldn’t see the pain I was in and my kids were asleep. We made it home and they unloaded the vehicle and I went in the house Sat on sofa took baby out of carseat and nursed her then at that moment my husband could see the pain I was in and how hard it was breathe. He convinced me to go to er and then my life changed and I was diagnosed with pe they said I had 2 clots in left lung and 1 in my right. It scared me so much especially since I knew what they were talking about because I’m in the medical profession. I have for kids I thought and it only 3 days before Christmas what if they had of lost their momma. The future for me became very scary unfortunately I am dealing with depression from this and the hormones from just having a baby. I am always do exhausted and don’t feel like I can function. While I was in the hospital they had me on 150 mg of lovenox and 7.5 mg coumadin my inrwas not where they wanted it to be by the 3rd day in hospital when they discharged me on Christmas eve. So they upped my lovenix to 180 mg once a day and 10 mg of Coumadin daily. On Jan 1st I had a bloody nose that wouldn’t stop went to the er and they discharged the Lenox because finally after 2 weeks I was therapeutic. I am unfortunately still on 10 mg of Coumadin and had my first appointment with hemotologist about 2 weeks ago have next appointment tomorrow. Feel ever so tired and unfortunately my husband doesn’t understand he thinks I should be feeling better by now. I shake my head and think if only her really knew the long journey I still have ahead in my recovery. It’s stressful when no one really knows what your going through . The only ones that know are my fellow pe survivors. Thank you for creating this post. I don’t like the fact that I will be feeling this exhausted for who knows how long . Just have to take it one day at time I guess. Thank you again.
Hi Jenn. Thank you so much for stopping by the site and for sharing your story. I’ll be thinking of you at your hematology appointment tomorrow and hoping you get some answers for what you have been going through.
You are right when you say it is so hard to find someone who understands what we are going through, and that is one of the reasons I wanted to create this community – to let others know they are not alone. Thank you for being a part of it and sharing what you went through. You never know when what you have to say will help someone else, you know.
I can relate to what you say about your husband not understanding. While mine was as supportive as he could be and wanted me to get well, I still think it is very hard to completely understand unless you are the one going through it. I know he thought I should have been better sooner or faster or done more around the house, but at the end of the day, sometimes it was all I could do to get ready to go to bed! I have heard from several women who also have a family to raise (I don’t) and who have been under added stress of not being able to care for the home and children like they used to be – and you are not the only one feeling the strain. My heart goes out to you because while I was not in the exact same situation as you, I do understand the pain of having someone you love (spouse or not) not understanding where you are coming from (especially emotionally), whether intentional or not. It hurts and it is just one more thing to deal with on top of everything else.
I am so glad you went to the emergency room when you did, and again, I am thankful you shared your story here. And I am glad you here to take care of those little ones. That is truly a blessing – for them and you!
Thanks for being here and don’t be a stranger. 😉
Jenn My PE was multiple and I know I am 69 but my family just find it hard to understand I get so tired and bad Anxiety and depression but you have babies my prayers will be with you xxcarol
Dear Jenn, Boy, you are dealing with a triple whammy — going through labor and having a newborn, having 3 other young girls to keep up with, and having a PE! Any one of those could totally zap one’s energy. I hope you can get some help from a grandma, or sister, or hire a nanny and/or housekeeper for a month or two at least. I think it might help a bit with your husband understanding what you are going through to talk about the type of fatigue this is. I’m finding the fatigue altogether different than just being very tired. I likened it to a runner hitting-the-wall although that is caused by an entirely different mechanism. This fatigue is the hit-the-wall sort where no amount of determination is going to allow you to push through it and go on. If a fire doesn’t get oxygen, it goes out. This kind of fatigue you can’t fight; you have to stop and recover. It is like nothing I’ve experienced before. It is hard for me to accept that no amount of determination will work; that mind over body is not going to win this. I bet the runners in this community could probably relate to this and I wonder if they would say this is a different kind of fatigue than they’ve experienced with running.
Hang in there! We do understand in so many ways what you are going through.
Sara, Carol, Cathy,
Thank you all so much for understanding and carrying so much. I’m glad I’m not completely alone in this.. Yes I truly understand your meaning of the exhaustion of a runner I fight with myself every morning just to get up and get kids ready and sent off to school. With the cloud weather that we have been having here I have had a few very rough days as far as being able to breathe its bad enough that before the pe’s I had asthma so I still feel like I’m suffocating …sigh but I’m fearful the pain is nothing like the night I was diagnosed. The appointment with hemotologist was a joke took bad there isn’t any more hemotologist locally I’ll have to find a decent one 2 hours away. My primary Dr sent me to himto observed by him for the duration of my treatments and he was under the impression he I was only to be seen by my primary for the duration he wasnt going to schedule any inrs our any future visits to him which had me a bit confused. I may need a new primary too. Geeze . She wasnt wanting to see me till July after I finish coumadin treatment . I don’t know about drs. The hemotologist didn’t really tell me much of anything I had to tell him what I thought had to be done and he seemed like he had no concept of having follow up inrs done. Well all in all I’m still on 10mg coumadin for 5 more months I guess and inr checks now either week which is fine beats having them done weekly. Thank you all again for your reassurance.I’ll keep in touch.
As a runner, I think I can speak to what you are saying Cathy. It is and is not like hitting the wall at Mile 22 of a 26.2 Mile marathon (for me, at least). This was definitely worse, a lot worse. With the wall, I could fuel and hydrate and hope to overcome it or, as you said, sheer determination would pull me through (and has). This is different because I physically COULD NOT go on. While I was determined to survive and get better, no amount of wishing and pushing was going to allow me to even move in the beginning. My body just could not do it. I can compare it to Mile 22 in the Goofy Challenge (13.1 and 26.2 miles back to back spread over two days). I could not make it past Mile 22 of the Marathon because I was hurting so bad from what I now know was an early sign of my DVT. I wanted to, I hoped to, I fueled properly, but I could not go on due to the pain. This was like that – but worse. Instead of being able to separate the rest of my life and everyday activities from the race itself, my everyday life was the race. I don’t now if this helps or not! Any other runners out there who can relate?
Sorry for all the typos my phone and auto correct…smh. fearful was supposed to be greatful and their were a few others .thanks 🙂
I just turned 50 in November, but am active (like most in this network) and never saw this coming.
On the morning of December 30 I woke up with a small pain in my chest. I figured it was a mild strain from lifting weights and disregarded it. That afternoon I cross country skiid and ran low on energy but figured it was the flu or again, just a strain from lifting weights.
For two weeks I lived with the pain figuring it was still a muscle pull or even a cracked rib. My workouts were less frequent and easier but PE was not even a word I was familiar with.
Finally I had enough and went to the doctor. They ran a series of xrays and tests and said I had all the classic symptoms of pneumonia. They did tell me that there was a small chance I had PE or even cancer and that a CT scan was the only way to be sure. I had done research and said let’s treat the pneumonia.
Two weeks later I felt that not much had changed and then played volleyball one night where my lungs felt like they were going to burst from my chest. I had never gotten winded at this sport and knew something was wrong. I set a doctor’s appointment for the next Friday.
Again, they said classic pneumonia symptoms but suggested the CT scan to be sure. This time I said OK and went right in. I had multiple clots in both lungs and they could not believe I made it this long without having to come in or something worse.
I was in the hospital for one full day where they also found a few clots in my legs. I got arixtra shots and was started on warfarin. I was sent home with a series of six more arixtra (I’m sure I’m spelling that wrong) shots and a load or warfarin. I was told I would have a few rough days while the medicine started working, but then like many in this post, that I could resume regular activity as soon as I felt like it.
It’s been four days since I left the hospital. I am low on energy, but make it through a full day without being too tired so I feel lucky after reading these posts. Excercise is not an option as just bending down puts pressure on my lungs and makes me cough. The cold here in Mpls. has never bothered me so much as my lungs hate to operate in -10. So, while I am an outdoors person that’s out.
Finally, this has been great to read about all of the recovery stories. There are a wide range of experiences shared here driven by the same curiosity to see what “normal” means. After reading this I see there is no “normal”.
I travel for work and am planning on resuming in a week and a half- but we’ll see. No matter what, I see a lot of support here will update all.
Steve,
Howdy, our stories are fairly similar, I was racing bicycles almost up to the day I was diagnosed. Here is advice based on my experience. You may have to take time off work, I tried to jump back in and it just made things worse. Fatigue, anxiety and your ability to control stress may be comprimised. I didn’t realize this until about two weeks after getting released from the hospital. I eventually had to take three full weeks off work before returning part time. I am in sales and travel often, if you do return to work pay really close attention to how you feel, pushing at any level has backlash to it.
Exercising is another matter, for me, I got progressively worse in my ability to do any physical activity through the first month after getting released from the hospital. I started back up just before Christmas, in early January I started coughing up low traces of blood and had to stop. I was just cleared last week to exercise again but at a very low exertion level. The PE’s are insidious, just as you start to feel good something else pops up. Point is, pay very close attention to how you feel and don’t push, maybe a little but back off if you don’t feel good.
Yesterday I had my three month review with the hemotologist and learned more stuff. I was told Pulmonary Hypertension was the most likely cause for issues I have now. Here is a good read on Pulmonary Hypertension – http://www.nhlbi.nih.gov/health/health-topics/topics/pah/
While all of us on this board have experience the PE’s are yours, and what maybe an issue for me won’t have any affect on you. Don’t take anything you read as gospel and try not to let the bad stuff bother you but do celebrate anything that is positive in your recovery.
Tim,
I’m still trying to get a gauge on all of this so can you share, your age, how long you had the pain before you went in or were dragged in, if you had PE in one lung or two and how long you were in the hospital. Sounds like we’re pretty similar so I’m just trying to do a little benchmarking even though I see that all have very unique situations and recoveries. Do you believe yours was due to travel?
Steve,
I just turned 50 on Jan 16. You can read my story in the Survivor Speaks section of this website but this is the short story.
I had a feeling of a pulled muscle in my right leg for about 2 months and thought I had broke a rib in a bicycle race a couple weekends before I went into the hospital. My sister is a doctor and by chance she called me one night and thought my injuries sounded odd and told me to see my doctor.
When I went into the hospital I had two clots in my right leg that measured over 12″ in length, both of my lower lungs (bi-lateral) were completely filled with clots, a clot was in my left shoulder and was experiencing severally low oxygen levels. Looking at my CT scans and my oxygen levels the ER doc couldn’t believe I had raced less then two weeks earlier. I was diagnosed with Factor Five Liden which is a clotting disorder as the cause for my clots. I spent 4 days in the ICU cardiac unit.
I have had multiple traumas in my life and this so far is the hardest to deal with. Your recovery is almost unmeasurable, there is no set time table for things to happen and working harder just makes things worse. It is also the first time that I have experienced sever anxiety and depression. The anxiety and depression are not all mental. Cardiac stress caused by the injury to your lungs will set off stress hormones which just fuels the anxiety and depression. I am currently seeing a therapist and it does help.
Hopefully this helps and it is not all doom and gloom. Keep your spirits up and try to not let this get to you. Don’t hesitate to ask more questions and everyone one the board is rooting for you.
Hi Steve and welcome to the site. We are glad you are here. Yes, as you say, many of us were active, healthy or otherwise unaware that this was about to happen. I know for me, I was a runner who thought I pulled a muscle in my calf (and side) on one day and two days later, I was barely able to breathe and in the ICU for seven days. I had worked so hard to get healthy, I was shocked when something of this magnitude happened.
I am very glad you shared your story because I am hearing of this more and more (maybe especially with the colder months of winter) – that pneumonia is a common misdiagnosis of a PE. I had no idea until I started reading others’ stories and talking to more people. I think it is very important to note how many times, for example, you sought medical advice before the real problem was discovered. I am so glad you did, and I am glad someone found it!
I was discharged on Arixtra as well (you spelled it right!) and stayed on it for about nine months before I was able to switch to warfarin and maintain a normal INR level. Do they know what may have caused your clots in the first place? I saw you started a discussion with Tim about traveling, etc. and I am glad the two of you could connect.
Thanks for being here again and yes, keep in touch!
I would like to say a huge thank you to everyone sharing their stories here and to Sara for putting this together, just reading through some of them has made me realise that I’m not alone and has relieved some concerns about the road to recovery. A brief history: I’m 34 yrs old and live in the U.K and up until last year was extremely fit and healthy. I competed in powerlifting events and strong man competitions regularly and felt fantastic. In January 2013 I contracted a mystery stomach virus which led to me being hospitalized for 6 days. During my stay in hospital I suffered kidney failure and seriously reduced liver function along with a whole host of other infections floating around my body. 5 days into my treatment I noticed that both of my legs from the knee down had swollen and the skin was red and very shiny. The doctor dealing with my case dismissed this as fluid retention, didn’t carry out any tests then sent me home a day later. The pain in my legs was horrendous, I truly have never felt anything like it before and never wish to again. Over the next month I was suffering with breathlessness, heart rate of 140 and blood pressure as low as 70/60 plus all the other pains and symptoms. I was re-admitted to hospital 4 times over these 4 weeks and every time was told it was just dehydration and post viral issues and sent home the same day. It wasn’t until the last admission that they finally did the relevant tests and the scan revealed sub massive bi lateral clots plus multiple small clots. I was rushed to intensive care and spent the following week in hospital before being sent home with daily clexane injections and a huge bag of pills. I really didn’t realise how long recovery would be. My doctors seem to think I should’ve been back to normal after a few months and act shocked when I tell them I still have symptoms. The depression and anxiety has hit me hard as sometimes I feel no one, including the doctors, understands how I feel and what I have been through.I have since been told that I will have to take anti coagulants for the rest of my life and I suffer with post thrombatic syndrome and soon I have to have more tests to see if I have thrombatic hypertension and/or scar tissue in my lungs. It’s been a real tough year and although some days I feel great there’s still a lot of days where I feel absolutely terrible.The doctors made me feel guilty that I wasn’t recovering as quickly as they wanted me to but reading all the stories on here has made me realise that it’s a long process and has made me feel more positive about the future and for that I thank you all. Stay healthy : )
Steve I was the same no help what so ever ,from the hospital then I found Sara and I am pleased
To say it has helped me so much ,
Recovery does vary from person to person but we can all do it together as its a lonely road xcarol
I just wanted to say thanks for your kind words, Carol! I am glad to have you here too.
Hi Steve. Thank you so much for being here with us and for sharing your story. It continually amazes me how many athletes/physically fit people suffer from a DVT/PE when they are otherwise healthy. It happened to me and several others here as well. So many people just do not think this can happen to them and in truth, as we know, it can happen to anyone regardless of physical condition.
I completely understand and can relate to how you are feeling right now. I feel very lucky to have a doctor who told me from the beginning and realizes that recovery would be a long road. I notice a lot of people are not told this and then are expected to be well within a few weeks or months. The more time that goes by, the more I realize how intense this healing process is. I don’t know why there seems to be such a misconception in the medical community about healing time, but I think there is! Also, as you have mentioned, so many doctors do not talk about the emotional aspect of healing. I know I was shaken to the core when this happened in more ways than one. I couldn’t believe I couldn’t run, couldn’t walk up the stairs and couldn’t even get out of bed. Nothing prepared me for that – the loneliness, depression, anxiety, fear – I understand.
I am glad you are here to talk about it with us. It makes a difference for me personally, and I think for other people here too, just to know what you are feeling IS normal and there is not something wrong with you – you don’t have to feel any guilt here and I am sorry that you felt that from the medical profession. That is so disheartening to me and one of the reasons I put this site together.
Are they testing you for clotting factors? I am on anticoagulants for life because of antiphospholipid syndrome, which is an autoimmune clotting factor.
Hang in there and keep in touch. Thinking of you and wishing the best – from all of us! 😉
I go to the thrombosis specialist Monday and will find out much more. For now, I really consider myself lucky. It’s been one week and I am moving around the house fine and even doing housework. I got on my elliptical machine yesterday morning and did my 30 minutes- much slower pace, but felt OK. Shopped at Costco today with some heavy items and handled the trip well. So far, so good.
This is great news, Steve! I hope you continue to have a smooth recovery. Thanks for letting us know how you are doing.
One step forward, two steps back. Just when I thought things might be looking up, I started noticing that I was having some mild to moderate pain in the calves of my legs and in my ankles. My wife noticed that I was limping slightly on our daily walks. After about 3 or 4 days of this I decided that “maybe” I should visit my “home away from home” – the ER.
I felt silly driving over to the hospital and almost turned around and went back home because I began to think that I was probably just over reacting. As many of us have said, we’ve begun to be hyper reactive to pains and other symptoms that we feel – things that in the past we may have written off as normal aches and pains. My thinking was that this was most likely not related to my recent DVT/PE experience and could not be any thing like another clot. After all, I’ve been on blood thinners for 10 months.
I was wrong. After an ultra sound of my legs another clot was found in my left leg. The question now was, are there any new clots in my lungs? The ER doc was hesitant to recommend another CT scan because I have had two since last April and she said that CTs are very high in radiation. In her words, “I’m going to have to leave it up to you to decide whether you want us to do the CT or not”.
I was already in high anxiety mode just hearing that I had another DVT and the thought of being sent home not knowing if I had more clots in my lungs was not something that I could deal with so I consented to doing a third CT within the last 10 months. Thankfully, no new clots were found in the lungs.
So, now I’m back on Lovanox injections for the next week and have had to up my Warfarin dosage in an effort to get my INR at a new goal level. Up until now I was kept at a 2.0 to 2.5 INR level and now the idea is to get it up to 3.0 – 4.0. It will be back to more frequent blood draws until that is achieved. Hopefully I can stop the injections soon. I absolutely HATE jabbing myself in the stomach with a needle.
On the subject of further information about DVT/PE (this site has been EXTREMELY useful in education on the subject) I would suggest that anyone who would like to understand more about DVTs should go to YouTube and use the search terms “DVT PE treatment”. I have found a number of YouTube videos by doctors who explain much of what is going on.
Rob, I can certainly relate to the one step forward, two back and the anxiety that causes and the thoughts of will I ever truly recover. One thing that your note brought up for me is the INR level. I have my INR tested at the clinic here once a month. On a Tuesday it was 2.5 and then just a couple of days later when I was having the IVC filter removed the hospital blood work came back with an INR of 1.89. The surgeon commented that the INR was “too high for us, too low for her”. It made me think about how well calibrated the clinic’s finger prick test was compared to the blood draw at the hospital. This was the second time that had happened with the ER saying my INR was 1.91 two days after the clinic said it was at 2.7. If there was really that much difference it seemed I should be aiming for 2.5 to 3.5 with the calibration of their tester rather than 2.0 to 3.0. The clinic says they do calibrate it although I wonder against what standard or when the last time the did it.
Since I mentioned getting the IVC filter removed, I’ll mention that I had two doctors tell me two different things. One said I should leave the IVC filter in forever; the other said it should be removed after six months. I also found out that it couldn’t be removed after it had been in for 300 days so the decision had to be made within that time or it would remain forever. The cardiologist finally gave me the winning argument for taking it out. He said if you ever had to have any heart catherization procedures they wouldn’t be able to go in from the femoral vein since the filter would be in the way but would have to do it from the jugular. The IVC filter is inserted from the femoral vein and removed via the jugular. I was fully awake and had no sedation (my choice) for both but I found going into the jugular was getting close to the limit I could endure.
Hang in there, Rob. I’m so glad to have this site. Thank you many times over, Sara!
I’m 19 in the military, I had just gotten over covid which initially felt so much worse than the pe so I waited 2 days to be seen. They couldn’t find the clot and I had been in and out of the hospital for about two weeks before for breathing issues and once they did a ct scan of my chest (the second one that month) they found an infarction. My doctor said “now we know you weren’t faking it” and I am going to a pulmonologist tomorrow to see what I can do and how I can recover. I was initially told to just go back to work immediately, I was not told to expect pain after taking blood thinners or ibuprofen (terrible combo I know but it’s what they gave me). So I would go back in a few times because I still had the sharp chest pain on my left side that radiated up into my shoulder. I’m not going to lie, I’m terrified. I have to walk up stairs every day, my barrack room is on the second floor and my work has no elevator but I’m on the third floor. It sends me into coughing fits where I can’t breathe and there’s another hospital visit. I’m constantly exhausted and they told me I can’t go see my family for Christmas because I need to go to appointments. It feels like I’m dying constantly… I know I’m not but two weeks after my pe I’m still running a fever. I’m just so scared because my job depends on me getting better in three months.
Hi Rob! Thanks for being here and for sharing your story with us. Thank you for the recommendation about the videos too – that is a great resource to pass on to everyone here. I’m going to go watch them myself.
Your story is important to share because I think many people do not realize they could clot again when taking a blood thinner. Also, you are give a great example of why it is important to be your own advocate by getting the CT Scan. While it may be dangerous to be exposed to the radiation, it would also be very dangerous to have another PE and not know about it! I am really glad you found that you did not have any and again, were able to share your experiences for us.
Do they know if you were therapeutic before you got the second clot? I have heard in many cases it may not matter. I am glad to have this community for us to share and learn with one another. Thank you for being a part of that.
I hope you are recovering well too.
Sara,
In answer to your question about “was I therapeutic before I got the second clot” – Yes, although there have been some problems getting my INR stable. It has ranged from a low of 1.5 to a high of 3.0. The goal “was” to keep me around 2.0 and with occasional fluctuations, I was in that range for awhile but now that a second clot has occurred, the goal is to get me above 2.7 to 3.0.
I don’t know why my INR level doesn’t seem to want to stablize. Each time it moves more than a point or two, the clinic raises or lowers my Warfarin dosage accordingly. Now, since a second clot developed I am back to trying to find the right dosage again.
It was just checked today and came in at 2.7 so the clinic told me that I can discontinue the Lovanox injections (good news) and try a slightly higher pill dosage for the next several days and get re-checked in a week.
I still feel some soreness in the leg with the new clot but nothing really too painful. Just enough to get my attention. I’m trying to keep my legs moving, not sitting for long spells, and drinking more water. Other than that, not much to do but hope things get better in the weeks to come.
Rob your story has helped me because back in October 2013 I had a severe pain in my leg and the doctors told me there was no way I could clot again while being on Coumadin. Turns out my clot had extended. I had to go on Fragmin needles until January 2014. I was told that for some people the norm of 2.5-3.0 INR level is too low. They didn’t want to increase my risk of internal bleeding so that is why I was put on Fragmin needles instead of higher dosage of coumadin.They found no blood disorders – there was a medication I was on that they believe was the trigger to my clot in the first place. I am now taking aspirin daily. I traveled by plane a week ago and was so nervous, I gave myself a Fragmin needle right before each flight. The flight was 5 hours, I walked often and drank a lot of water. I find it hard that my lungs will hurt due to weather, I live in Canda and we have had a long winter of -32 Celsius temperatures this winter. I went to the Caribbean the warm weather helped by the high winds also irritated my lungs. Every time they hurt I get scared, trying to live not focusing on every pain is challenging. I have thought about getting another chest scan but was told weather does affect the lungs. Even breathing in cigarette smoke causes me pain. I was glad that I flew both ways with no issues, helped in my healing journey. So glad to have this spot to check in to share our stories.
Jacqueline – the fact that your doctors told you that “there is no way you could clot again while being on Coumadin” seems pretty irresponsible on their part if you ask me. I was told from day one that being on Coumadin “should” prevent new clots but that it doesn’t guarantee that I couldn’t still form new ones.
Even having been told that, I was pretty shocked to learn that a new clot had formed. With an increased dosage of Warfarin and another round of Lovanox injections I have raised my INR and in fact will go in tomorrow for another blood draw to see where I am presently. It was in range at my last lab test so I am off of the injections at least.
I can completely relate to you saying that every time your lungs hurt you get scared. With every pain that I feel in my legs and or chest I also become fearful – especially when my wife is out somewhere and I am home alone. It’s a lousy way to live day to day. Just a few days ago I woke up with leg pain in the middle of the night and could not get back to sleep. When it did not get any better after an hour or so I actually wnet to the ER but didn’t check in. Instead I called to speak with an advice nurse and was told that I could make a regular doctors appointment later in the morning.
My doctor explained that the leg pain was caused by restricted blood flow due to the two clots and is something to be expected. Knowing that doesn’t bring me a whole lot of comfort though.
I still get incredibly tired and short of breath with even a small amount of exertion, but my doctor doesn’t seem to think this is heart related, and having been through this so many times I really don’t feel that it is my heart either. The plan is to see if my higher INR level will give my body a chance to heal the existing clots, and hope that no new ones develop. He said that more invasive tests could follow if things worsen but “we are not at that bridge yet”.
I hope that everyone who is dealing with clot related issues are coping and not letting it get you down – (And, I’m speaking to myself also when I say this).
Rob, in ER at the time the doctors had me freaked out regarding my clot extending. The issues was also that my original scan was done in a different province and they didn’t have a comparison so they were telling me that I was a rarity while at the same time discharging me and telling me I could continue my normal level of activity. Then I find out from the Hematologist that it’s possible where mine is located behin
Hi Rob
The doctors made me feel like a rarity and said this was so unusual. It didn’t help that they didn’t have my original ultrasound because it was done in a different province. Even with the clot extended they told me to go ahead with my normal level of activity which I was like really will this clot keep moving. I had to ask if I needed to be wearing compression stockings. One doctor was like that’s a good idea, and another has said I need to wear for 2 years although it doesn’t prevent clot it will help with swelling. I feel so confused at times. Then I was told that climbing that I did might have cause the extension of the clot so I need to be aware of my level of activity. I am thinking of asking them to do a chest scan or at least an xray because I would like an update on the clots in my lungs. I know the one behind my leg has hardened and they say it won’t be an issue in that state.I will keep you in my thoughts for your INR level to be higher. Please update after you get your results. I really like this community.
Thanks for your reply, Rob and yes, great news about discontinuing the injections! That was a great day for me as well. As I may have said, I also had a horrible time getting my INR to stabilize. I went on a Vitamin k supplement and that is truly what helped me. Hopefully you are on the road to stabilization now that you have been in range. It is so important for people to realize that while we may be taking a blood thinner, a new clot is in fact possible, as you demonstrated (unfortunately), that is why it is so important for us to listen to our bodies!! Thanks for sharing your experience here.
Wishing you the best as you continue to heal.
Good news, yesterday I completed my first indoor cycling class. It was a course ride meaning that you ride a route that is programmed into a computer and it creates a realistic road ride. Our course was 22.85 miles long and I did it in 1 hour 24 minutes, avg speed of 16.1mph. My average watts were 157, watts are the measurement for us humans and think about it like horsepower for a car. While I was very stoked to finish the ride it is a far cry from what I would have done a ride like this 6 months ago. Last summer I could hold 250+ watts for hours and would have done this ride in about 1 hour. I did have a moment of light headedness and popped some blood vessels in my skin near my upper chest that has left a bruise. Most likely from the blood thinners. This was definitely a step in the right direction and at least I feel confident to begin pushing my abilities a little harder. This Tuesday I am going to try a 2 hour ride at a reduced pace.
To those just starting the fight or who have been doing this for a while remember every little step forward is something to celebrate.
Tim – Congratulations on the progress that you are making. I can’t imagine being back to the level of being able to ride a bike. Walking around the neighborhood for 20 minutes is a big deal to me. I wouldn’t last two minutes on a bicycle.
You give those of us having a hard time something to shoot for and your progress is helpful in illustratiing that there is hope that things can improve.
To Rob J, Frank and Jacqueline;
Thank you. It is funny because two weeks ago I still felt weak after walking a flight of stairs and a 10 minute flat ground walk left me short of breath. But something has definitely changed in these last couple weeks that made me want to try the class.
While overall it is the the best I have felt in almost 4 months the ride was not without it’s problems, I got a little light headed at one point when I was pushing harder then I should have and today I have had constant pain in the lower right area of my sternum. Typical area of pain for pulmonary hypertension. I am going to start being more consistent with my riding but will be backing down the exertion level a notch or two for a couple more weeks.
Frank you may want to ask your doctor about the weight lifting, I am not to lift weights more than 50 lbs for at least two more months. The clots damage the small veins and arteries in the lungs and lifting I was told could cause bleeding. I am glad you are back at it but go slow. I know it is hard but sometimes to go fast one must go slow.
Hi Tim – Congrats! Thanks for sharing when I hear the success of someone healing it encourages me to return to my physical fitness. I also have to remember like you said to celebrate the small steps.
This is awesome news, Tim! 😀 I am so happy to read this. You have no doubt given some people here some great encouragement, myself included. Come back and let us know how Tuesday goes.
Thank you!
Nice job, Tim!
I’m 37 and had a PE diagnosed on January 10, 2014. (My full story is listed above on January 28.) I feel very fortunate to say that, a month later, I feel relatively normal.
I got the go-ahead from my doctor to start exercising again February 1, 2014. Since then, I’ve been to the gym about 7 times since then, where I’ll generally warm up with 30 minutes of cardio before lifting heavy weights for 30-50 minutes. I’ve also been skiing four times–once at the resort and three times in the backcountry, which is fairly vigorous. (I’m well aware of the dangers of skiing on blood thinners and have concluded that I can do so safely within my own risk standards.) I started light and have progressively picked up the intensity of these activities. I’m now ready to push myself hard again.
I feel good. Having read many of the entries here, I was seriously worried that I’d suffer shortness of breath or fatigue as PE aftereffects. Luckily, I haven’t.
And now that I’m able to exercise, I want to exercise with a vengeance. I’ve always been active, but having felt like a pitiable health victim for a month, I want to prove to myself (and, to some extent, others) that I’m not just healthy but in good shape. There’s kind of an “f— you, PE” mantra running on loop through my head as if were “exercising” my demons. It feels great.
So, anyway, there’s my current success story. (I say “current” because I don’t know if this is the end of my PE narrative or just another chapter.) I have been able to return to a normal and vigorous life one month after my PE. Like I said, I feel very lucky.
Also, here’s my pulmonary embolism recovery spirit fairy: https://play.spotify.com/radio/artist/2nszamLjZFgu3Yx77mKxuC
Hi Frank, I tried the link and said I can’t access from my country. I am in Canada. Is there another way to access it?
Glad your are doing very well!
Thanks
Sorry, Jacqueline. The link was to Serena Williams, who got a PE in 2011 after stepping on broken glass. She recovered and promptly reasserted herself as the most dominant woman in pro tennis.
If Serena doesn’t work for you, look up Jed Ortmeyer. He is another good PE recovery fairy. He played pro hockey while on blood thinners and after suffering a PE.
Hi Frank
Thanks! I have read Serena’s story when I first had my PE. I will look up Jed.
Another good and inspiring story is that of NASCAR’s Brian Vicker’s if you haven’t read it. I only mention it because he is racing this weekend in Daytona. Search his name on the site’s homepage and the interview with him will come up! It really helped put things in perspective for me that we are not alone in how we feel about all of this and recovery. 😉
Thank you again for sharing, Frank! You are a great example, as are many others here, of how this effects each of us differently. And thank you for being an inspiration to us!
So tonight was the two hour ride night. It was 20 minutes of warm up followed by 6 two minute power outputs and 8 one minute high power outputs. The two minute outputs were at 120% of your average watts and the one minute drills were at 140% of your average watt output. Each hard block had a 1 minute recovery time and 5 minute easy spin between each group of blocks, I know I am speaking greek.
I ran my watts at 230, a decent number but still no where near what I was a few months ago. Since I don’t work myself much past 140bpm heart rate these days the drills were not all that difficult. I actually rode for over two hours as I was feeling good in the cool down so I kept going, kinda like Forrest Gump.
What I am finding in these longer workouts is the damage to my right calf and behind my right knee where my two clots were/are. I get a feeling like I am going to cramp but don’t and when I was pushing 300+ watts I could actually feel the pressure in my leg build as I pushed down and and release as I pulled up on the pedal. For those not into cycling my shoes are physically attached to the pedals so you pull up on the pedals with as much force as you push down.
Overall I am very pleased with how fast I have come back these last two weeks. I do feel I could push harder but I am trying to take it easy. I do get chest pain to the right of my sternum but it isn’t as painful as it was a month ago and it actually seems to get better after a half hour on the bike.
Thank you everyone for caring and my next hurdle will be seeing the cardiologist in a couple months and the assessment of my aneurism.
Take care and just keep pedaling forward, that is all any of us can do.
Thanks so much for sharing, Tim and for sharing your insights about your calf and knee – very interesting and it will also be interested to see how/if it progresses!
As I have said before, you are an inspiration to myself and many others here, and I am grateful to have you as a part of this community! The progress you are making is so amazing and yes, “keep pedaling forward” is great advice, whether you are a cyclist or not.
Keep pedaling forward!
Sara,
It has been a very interesting couple of days, I have plateaued in my riding and my leg pain has intensified. My sister Jean who is the doctor and is the one who recognized my systems back in October and told me to go see my doctor is in town visiting. We have a very honest and open relationship and we had a long discussion on my prognosis last night. The first thing she said is after reviewing all my scans, ER and ICU reports that I was living on borrowed time last fall and that it was amazing I didn’t go to bed one night and just not wake up the next morning. It is one thing when a doctor tells you something like this and another when it is your sister.
We did discuss my leg pain and her feeling is (see even when the doctor is your sister you don’t get a straight answer) that the veins that had the DVT’s are significantly damaged and that the blood is not moving efficiently into them and causing inflammation in the areas where the clots were/are. I asked her if massage would be helpful and she said it wouldn’t hurt but most like it won’t do much good either. I rode tonight for over 1-1/2 hours and my right calf is very tender right now. I am going to ride again Sunday but will be backing off the intensity for a couple more weeks. I can definitely feel improvements in my power levels but at the same time the chest and leg pain are reminding me to slow down.
Hi I had been on Yasmin for 3 years and in November 2013 I had a small transient ischaemic attack.I was terrified as my mother died from a stroke. Thankfully the paralysis reversed.It turned out I had a bunch of emboli in my lungs and a big clot in my pulmonary artery. I am a trained ICU nurse so everyone thinks you know “everything.
It was an eye opener being on the other side of the bedcovers.
It is now 3 months and I am still very tired at the end of the day.I have started riding my horse but am still very short of breath.I never realized it takes so long to fully recover.BIG SHOCK for someone that never liked sitting still for too long.Thanks so much for sharing your stories .It felt good to recognise my symptoms in there.
Hi Nicky and welcome! I am so sorry to hear about the passing of your mother and can understand your fear. I lost my mother just a few years ago to an unknown and unexpected cause. I am thankful you and I are both here to talk about what happened to us and I am glad the paralysis was reversed. I can’t imagine how scary that would be.
I am wishing you well as you continue to recovery and undoubtedly go on to help others who may have gone through what you have. It takes a special person to be a nurse – I know because I have met a few special ones when I was in the hospital – it was actually my ICU nurses that kept me going when I thought I wouldn’t make it. 🙂
That’s so cool that you ride horses – wishing you the best as you continue to recover to do so!
Hi all. May I join the party? Sara, I had been trying to find answers to how long is “a little while” the doctors tell me it will take to recover when I stumbled across this very informative site…so thank you so much for it! And thanks to everyone for sharing their stories. It’s really so helpful!
My story: I’m 52 and the only thing I’ve had wrong physically is a bad back from a car accident 20 yrs ago. Last yr it got progressively worse and just vigorous walking would have me in intense pain. My surgeon requested a CT Discogram be done which essentially recreates the pain to make sure surgery would help with the worst of it before addressing the rest. I had an allergic reaction when the dye was injected into my spine so I was sent to the ER where I was injected with a powerful dose of steroids with other meds. I immediately had intense chest pain so they did an EKG which was fine. I was sent home with 5 days worth of steroids and 3 other meds. I was short of breath but was told it was from the reaction. By the 5th day I could barely walk from room to room without being very winded and I woke up that day with that same bad chest pain I had the week before. The simple act of wrapping a present had me literally gasping for air with my pulse soaring, but I just assumed the “reaction” had gotten deeper into my lungs. Since it was my last day of medication, and it was a Saturday so my dr wasn’t in, and we were just getting hit with a snowstorm, I reluctantly let my husband take me to the hospital. My vitals were all fine except for a very rapid pulse. But blood work showed a possible MI so they sent me for a nuclear lung scan which wasn’t very clear, but they couldn’t risk a CT scan because of the previous reaction. It showed a blood clot. So they gave me a lovenox injection and were going to send me home with a coumadin and lovenox script, but just standing up to get weighed for the coumadin sent my pulse to about 150 so I was admitted. Thankfully, because in the middle of the night I had an episode and almost passed out for about 1/2 hr. It wasn’t until I heard “crash cart” being called when I finally came to. My pulse had been around 30 and my bp dropped severely. So the next day I was visited by my primary, a pulmonologist, cardiologist and hematologist. After heavily premedicating me I had a CT scan that showed both lungs were “loaded” with clots, the ultrasound showed a “substantial” clot in my leg with many traveling up my leg, and the echo showed heart stress and a small clot. This all happened 2 months ago. I wasted 1 month trying to get my inr level therapeutic which never happened even after increasing the injections and coumadin each time I had my blood tested which was 2x a week. So I finally switched to xarelto (goodbye injections!!!). All tests have come back negative. So yay, no cancer or other serious illness. But at the same time, like others have said, I need to know why. I have zero risk factors and didn’t even have a swollen leg with the amount and size of the clots there. That first month home was exhausting. Just doing anything left me breathless and altho I’m not a daytime napper, I spent my days lying on the couch sleeping for most of it. So the good news…because I was laying around for so long my back barely hurt. And after about a month on the xarelto and several iron transfusions I got my breath and some stamina back to some extent. With all the tests they found I was severely anemic and my body doesn’t absorb iron or B12 but they don’t know why. And after a month of prescription iron my levels were worse than before taking it. So I’ve had 2 iron transfusions, but after additional testing I still have to have more. So that was a reason why I was so tired and it is taking so much longer to bounce back…very low oxygen in my blood can’t feed the lungs properly so they can’t clear up the many clots etc. I was feeling a bit better so I’ve been trying to get out and about but now my back has been hurting much more again. I am forbidden to have any surgery or even epidurals for the pain until I’m off the xarelto which is 6-9 months, depending on if they find a reason for the clots. I need to start walking and working out for my heart and lungs but I’m severely limited with my back. And that has now started to make me a little depressed. Since the acute DVT and acute PEs I have been just so thankful to still be alive. But now that I’m ready to join the ranks of the living again I realize I still have the back issues to deal with but that’s in limbo. I have also had several bouts of vertigo…has anyone else had that with PEs? The doctors said there’s so much going on in my body it could be caused by anything…in other words, they don’t know why (I’m getting tired of hearing that!) And this week I’ve started feeling a bit off again. My pulse has been racing every once in a while and just standing washing dishes has gotten me a little breathless. I’ve also felt an odd feeling in my chest. Not pain, but something more like pressure I guess and an occasional quivery feeling. I’m not sure if it’s the many clots moving around as they clear (hopefully) or if it’s something to worry about. I have an iron transfusion tomorrow and am seeing my primary dr the next day. Hopefully she can answer some questions for me. Anyway, sorry this was so long but thanks so much for listening. It always helps!
Hi Carole
I Have also experienced some vertigo and have been very tired ,even since getting back to work.Had to sleep for an hour when I got home yesterday.
Hi Carol, 8 months post DVT, OR and I too had about a week’s worth of Vertigo. Some of what you said sounds a little familiar, chest pain and pressure, ended up being pneumonia. I also had a large amount of clotting in leg and a lot in my lungs. My last post mentioned this. I still fight asthma flair ups. But I have had some days with a little more energy. Still sleep 10 to 13 hrs. So I now set my clock and hope this will help me to get back on track. DON’T let things slide, be pro active. Though you may have leg and lung pains for a long time you get to know when something is not right. Best to you and glad you found this sight, I have found most of my answers here.
Hi Carol, I am also anemic which is affecting how my lungs are feeling. I am currently getting iron infusions. I sometimes get tired standing cooking – feel short of breath and weak. Docs have said its combination of low iron and lungs healing – lack of oxygen in blood due to low iron. I get pains I call pinchy pains in my chest they come on after being outside in cold, or windy weather or when I have over exerted myself. I am 7 months post PE, if felt great the first month after then realized I was over doing it. When Winter came on some of the issues flared up again. Due to low iron I pace myself these days. It’s truly a journey when I came out of hospital one doctor made it seem like I would be back to myself in a few days. Thankfully my GP told me it will take up to a year. I am so thankful for this community to check in because medical teams seem limited. Take care
Hi Nicky, Jean and Jacqueline,
Thanks so much for your replies. I keep reading over all of the stories here and am still amazed at how different and yet how similar they/we are. Jacqueline, have you ever had any reaction after receiving iron? The first time I had had some achiness and felt like I was getting sick that night, but woke up fine the next day. The next one was fine. I had another transfusion for an hour and a half yesterday after not getting it for almost a month. By last night I felt like i was feverish, very achy and cold. But again woke up fine today. I know that could be a reaction. I was just wondering if you had that too.
Like you all, the exhaustion is overwhelming at times. But for some reason I don’t sleep well, only averaging about 5-6 hours a night. I never want to get up in the morning, but I still can’t seem to sleep for longer unfortunately.
Best wishes to you all on this long road to recovery. We WILL get better!!
Carole, you have described exactly what my sleep patterns have been like for so long! I fall in bed exhausted at night, but wake up around one or two (sometimes you’ll catch me here! 😉 ) and CANNOT fall back to sleep for anything. I almost feel energized and ready to take on the world?! Then, I fall back to sleep for a bit and can’t get up in the morning when I should, even though I am awake already. I can’t seem to fall asleep, stay asleep and rest. I did see a neurologist in the beginning because I was having some serious complications at my job (which I ended up not being able to keep, unfortunately) and they wanted to do some sort of tress-sleep study (combined) to see what was really going on. I was never able to get the test because I lost my job (and insurance) and at the time, it was primarily to see if I could help my job (it was very high stress). I have often thought of revisiting the neurologist now when this many months later I am in a more present state of mind and might be able to get to the root of the sleep issue. I just wanted to share with you!
Carol,
I still have issues sleeping through the night. While much better now then it used to be, I still wake up almost every night around 2:30 – 3:00 AM. I have found this to be mostly anxiety related. In the beginning it took me 3+ hours to go back to sleep. Like you I would be so fatigued from the lack of sleep that it was a never ending cycle of fatigue and inability to get a good night sleep. I am much better controlling my anxiety now that I usually fall asleep within 5 – 10 minutes of waking up. Have you been able to identify the triggers causing you to wake up in the middle of the night? I found that just getting out of bed and getting something to drink made my mind clear enough to go back to sleep. Hope you find your solution.
Hi everyone,
Carol, I haven’t had any reactions yet. This last week when I had it done I did feel a bit dizzy after however that could also be due to surprise snow storm and long commute home.
Does anyone still experience chest pain on and off. I know they say it’s weather related – long cold windy Winter. Also, my calf muscle is tight they say the clot has hardened and won’t cause any issues. Truly a journey!
Hi Carole! Thank you so much for being here and sharing your story. I am really grateful you are here to do so along with the rest of us, and I am glad you found BCRN too. 😉 WOW! Your story is very intense and it reminds me of how lucky we all are to be here.
I can relate to many things you said and as you also said, it is so helpful to share our stores and discuss with one another. Every time I hear a new story from someone here I am reminded of how different we all are and how much there is to learn about what we have been through. I also was severely anemic and still have problems with my Iron. I take an Iron supplement when I can, but is is so hard on my stomach, I really on take it a couple of times a week, which helps. I was taking it daily when I first got out of the hospital and that was miserable.
I understand your frustrations with being able to exercise – or even move! Have they checked you for any type of clotting disorders or otherwise given a reason as to why you may have had the clots in the first place?
I will be thinking of you and stay in touch. It is great to meet you and thank you again.
Hi Sara, Thanks for the welcome!
I was tested for the “usual” clotting disorders including lupus and genetics etc. but all are fine. Myinternist did draw more blood yesterday to test for more autoimmune diseases and also thyroid – I have nodules that have to be monitored but since my system has been so out of whack she’s afraid I may be having some issues with that. I also have to have 4 ultrasounds for follow up testing on things that were found during my initial CT scans – thyroid, kidneys, ovaries and abdomen. Does this stuff ever end?? She also told me I might have to be on xarelto for life which means no back surgery or even injections to ease the pain. Then I was told by my job yesterday that if I’m not able to go back to work full time without limitations they can’t take me back. I was hoping to maybe try part time hours but the policy is all or nothing. I’ve been on short term disability while I was going thru procedures/testing for back surgery. That’s up in 3 weeks. There’s no way I have the stamina to work full days at a busy job now! Not to mention the back problems I can’t do anything about right now. I am not the woe is me type or question why this happened to me. We all have our crosses to bear and thank God mine is only this when others are going thru so much more (my stay in the hospital happened to be on the oncology floor). But I did get a bit depressed after hearing all that news yesterday. I don’t want to be disabled – that’s a bitter pill to swallow. But I went to bed knowing I have to accept where I am right now and concentrate on getting healthy. so I will start thinking/planning the next phase of my life.
As far as sleeping goes….no Tim, I don’t know why I’m having the sleeping problems altho,in truth I’ve never been a good sleeper. I don’t think this anxiety driven….I’ve had that before and it doesn’t seem like that at all. My problem is that I just can’t fall asleep and will end up reading until about 2-3am. Then finally fall asleep only to wake around 6 when my husband gets up for work. If I’m really lucky I might snag another hour, possibly 2 before finally getting up. Which then makes me tired for the day…a vicious cycle!
Hi Carole. I can relate to much of what you are said and while I don’t think this ends like we wish it would, I do think it gets better over time as our bodies adjust and hopefully begin to heal. I know your fears and frustrations about work. I lost my job because of all of this and that was a very tough thing to bear. I’m still getting through it and everything that came with it. You’re in my thoughts and I am wishing you a peaceful evening. We’re here for you, Carole!
I am still in bed most of the time. I am beyond depressed. The expert pulmonary guys at UCLA have no answers. I am short of breath, I lose my voice daily for unknown reasons, I have a ton of meds, oxygen and breathing meds.This site is the only place that lets me know others are having a very slow recovery. I cannot stand being in bed all the time
I couldn’t stand it either, Sue! I think I was in bed for about a month straight after my PE and still have days where it is all I can do to get up. I just wanted you to know you are truly not alone and we are all here for one another, including you. Were you able to catch this week’s post about depression? I know it may be “old” news so to speak about how to deal with it, but it at least helps to let you know you are not the only one who is feeling that way. I still struggle with depression this many months out from time to time. Do you have another course of action to find answers? I am wishing you a peaceful night and please know while I can’t give you answers or take away your pain of this, I am wishing you well and you’re not alone.
my husband is so very supportive and awesome. I am blessed with that. I did read some of the other posts. It is very helpful and good to know I am not the only one with this. I was told to go to Colorado to the pulmonary hospital there. I just wonder what it is that they can do that is so different than what I can do here. I am just gathering info at this time. If I go there, they say you stay at a nearby hotel and go to the clinic for four days or so. Then I have to figure out how to get to Colorado since I don’t think I can fly at this point. The elevation of where the hospital is might be an issue. I don’t know what it is, but I believe it is in Denver. right now elevations would be impossible. I wonder if any other posters here have gone to the hospital, what they thought, did it help etc. I am filling out gobs of paperwork to go on SSDI. anyone done this,? would like to hear about that as well. thanks in advance. best wishes for a nice weekend
Sara, and everyone
I have visited a few online places for DVT/PE support your site is the most positive, informative and caring one I have found. Everyone sharing their story from a place of courage and strength, motivating each other. On my trip a few times my chest hurt and all I kept thinking was I have to make it home so I can share with the group that flying isn’t so scary after all. I come here because although I have supportive friends and family no one fully understands the anxiety, the body sensations the up and down climb. Thank you everyone!
Thank you so much for your kind words, Jacqueline! It has been my hope to create a strong community here where we can feel safe and supported in talking about this. I am so glad you DID make it home to share with us about your journey! What a great testimony to tell others who may be fearful of flying (I was too until I did!). I’m glad you’re here and thanks for being just as supportive to all of us.
Hi Sara
I live in the UK but I was diagnosed with multiple P E’s in November 2013 after experiencing severe shortness of breath. I was hospitalised and given warfarin tablets but when they discharged me I was given no information at all. I came out frightened by this illness, feeling very ill with no clue what to expect or how long my recovery would take. Thankfully my GP has been fantastic but I am still off work as I feel breathless & exhausted and sometimes I wonder when I am ever going to get over this. There really is no information out there to give you an idea how long it takes to recover from this so when I found your blog it really made me feel better. Thanks so much for that
Hello Debbie and welcome to this community! We are glad to have you here. You are welcome. I felt the same way you did when I came home from the hospital here and it was so overwhelming and scary. I felt very alone and unsure of what would happen next. You are not alone in that at all. Getting back to work has been very difficult for me, as I now it has others too. Together, we will get through this! My thoughts are with you as you continue to recovery and keep in touch too.
Hi
I know this may sound like a weird question but does anyone else feel that their breathing is not too bad when you are sat down but as soon as you stand up it just feels like your lung completely closes off? I am still waiting to go back to the hospital for my first appointment since my multiple PE’s were diagnosed in November. My appointment is on the 18th March and I’m not sure how helpful they are going to be as I am overweight due to being hypothyroid too. Other than having regular INR blood tests and being given the warfarin they have had no contact with me since I was discharged. My GP has been absolutely fantastic as I still feel like absolute hell most of the time and in fact a lot of the time I feel worse than I did when I was hospitalised. I have a lot of chest pain front and back, breathlessness, dizziness, pains in my head and the tightness in my whole chest area too. At my most recent GP appointment I mentioned the head pains and dizziness she said my blood pressure had dropped drastically and she gave me some tablets to take. After 4 months I still can’t walk around my local supermarket without feeling like I’m going to collapse and I have to use one of those horrible mobility scooters just to do the weekly shop which I find highly embarrassing.
Hi Debbie! I felt like you did in the beginning, yes, any amount of energy I spent getting up or moving around was enough to take my breath away and everything was difficult. I could not do the shopping or walk up the stairs. I am also hypothyroid and need to lose weight. I know how you feel. My doctor actually said for once my weight did not cause this and while losing weight is always beneficial, it is not something he has focused on. I hope you can find similar support from your physicians as it made a difference for me. Getting in shape or losing weight is so difficult when you are also going through this kind of recovery. I can’t believe you had to wait until March to go back in! I understand your frustration. I was in a lot of pain for the first 3-6 months of my recovery. It was awful. I thought, “why bother is this is how bad I am going to feel?” I know it sounds, cliche, but hang in there. We’re here if you need us and that is why I started this site – you’re not going through this alone! Thinking of you.
Thanks Sara
I just get so frustrated with myself because I keep thinking to myself that I should be better now and I realise how much my poor hubby is still having to do for me when he gets home from work after working 11 hour days.
Oh, Debbie! I know how you feel. I spend more months than I care to think about feeling that way. I was in a very similar situation with my husband and myself. You can’t feel any better than you do right now. I know how hard that is. Hang in there (as cliche as it sounds), you’re not alone and right now, you’re exactly where you need to be. 😉
Hi Sara
I finally had my hospital appointment yesterday and to my surprise the consultant was very helpful. He has said that it will be at least a minimum of another 2-3 months before I’m allowed to go back to work and that it will take 2 years to fully recover from this. He actually doesn’t think I had a DVT in my leg but probably had one in my pelvis instead which surprised me. What I was most surprised about is that he didn’t think my weight was a factor although he said obviously losing a bit of weight would help me feel a bit better.
Because I haven’t progressed as quickly as they had hoped I would they are going to do another V/Q lung scan, heart scan and a brain scan as well as keeping me on Warfarin for the foreseeable future. The consultant was so helpful I just don’t understand how he didn’t tell the hospital doctors to give me this information when I was discharged after my stay in hospital rather than sending me home with no clue what to expect and how to look after myself.
At least now I won’t keep beating myself up worrying that I don’t feel well enough to do housework or get back to work yet
Hi Debbie. The things you are telling me your doctor said sound very similar to what my doctor told me. I could not work for a month (and then I went back to work too early and ended up losing my job), he told me it could take two years to fully recovery and that being overweight (even though I was trying to lose it at the time) was not a factor in this case. In a lot of ways, our stories are very similar. The ER doctors also did not tell me anything like this – it wasn’t until I was out of the hospital to see my hematologist on a follow-up that I found it all out. It’s concerning that more doctors do not seem to be aware or share more information!
I am glad you have some timelines and hopefully some relief that comes with that. For as angry as I was about my job and potentially long recovery, I did also feel some relief knowing I was right where I should be according to my doctor.
Thinking of you and hoping you have a great week!
Hi guys
does anybody have times when you feel like you can’t take anymore and find yourself just a weeping mess. I feel like my health is not changing since my original PE diagnosis 5 months ago? I have just had to put my 6 year old cat to sleep and I can’t stop crying. I just feel there’s nothing good left in my life and everything makes me cry. Life is just one long round of pain , exhaustion and breathlessness
Dear Debbie I feel just like you ,I also lost my cat on the 1st of March he was 14 but my soul mate through all my illnesses and the PE,s I just miss him so much and feel everyday lost with out him ,why don’t we get offered advice after a life threatening illness as their is a wide variety of help for cancer patients and they are both severe illnesses xx((((hugs))) Debbie I am just going to trust The Lord xx
Hi Carol
Thanks for your message. I don’t think I have ever felt so low in my entire life. My husband is a wonderful man who has helped me no end since I’ve been ill but my cat was my comforter and was always there day and night for cuddles and kisses. The fact he was only 6 and his euthanasia was so quick has hit me so hard and my health seems to have taken it hard too. Perhaps its all the crying has made my breathing and exhaustion worse but I feel like hell. I’m still waiting to go back for another V/Q lung scan and a heart scan to see how everything is doing in there and whether I still have any clots.
You are very right about the lack of information here in the UK about how to live with PE’S and its totally wrong because it IS a SERIOUS condition and its not right to be left clueless when you are so scared of dying.
Dear Debbie, I can so relate to what you are going through! The loss of a dear pet is a double whammy because you are both grieving for your best friend and as a best friend they are your source of comfort when you are dealing with the difficult times in life. When my first corgi died and I felt this double whammy so hard, I told myself I would never again have only one dog. When you are ready (and you’ll know when it is time), you might want to consider a pair of successors. Nothing can replace the pet you’ve lost but they can have successors! Four months after my PE, I lost my 5 year old papillon to encephalitis. I noticed something was wrong on Wednesday and took him to the vet. He was gone in two days. He was so dear that every time I looked at him I had to smile. He made me feel so wonderful. It was very hard to lose all those chances to smile. But, it did help a lot to have the support system of his mother and siblings to hug and hold. I always focus on the gift these beautiful creatures bring into our lives and how we are better for it to have their lives and ours intersect. Hang in there! I’m glad you’re on this blog so we can share are stories and understand what this experience is like through the eyes of others that can truly understand.
I just wanted to say beautifully said, Cathy! THANK YOU!!!!!
Oh Carol, I am sorry to hear the loss of your kitty too! As I just said to Debbie, I know how important pets become in our lives. My two dogs mean so much to me and are truly some of my best friends. I just wanted to say I am thinking of you too and wishing you peace during this time. The loss of a four-legged companion is very difficult!
Oh Debbie, I am so sad to hear of this! I know how special animals are to us. I have two pups and they are everything to me and have helped me through so many dark days! I am sorry to hear of your kitty. There is nothing quite like the pain of losing a pet-friend.
I have gone through what you are describing. For me, and as you know we are all different, it was about 6 or maybe even 7 months before I started to feel like I was making ANY improvement in my health and even after that, I still faced setbacks that made me feel like once again I had not improved at all. I think that is a very normal part of recovery for all of us. I still, nearly two years out, face the emotional stress that you describe. Seemingly little things made me very sad and hysterical, very quickly. Where I am now in my recovery, I feel like taking a walk helps to clear my head and even if I try not to think about how out of shape I have become, I do, and it helps me feel like I am doing something about it.
There are good things left, Debbie, I know it is hard to believe some days. You are here and have a story to share and you never know who else’s life you may have touched with what you have to say. I hope someone here can do the same for you. You are not alone! Thinking of you and the loss of your kitty. I hope you are feeling okay today.
Hi guys
thank you all for the nice comforting comments about the loss of my cat Barney. Whilst I do have other animals at home Barney was my big snuggly boy and I miss him every day. It is very comforting to know that from your comments that hopefully soon I may start to feel some improvement in my health. Its the exhaustion that is getting to me most and perhaps that is why I feel so low.
Debbie,
I am fortunate that I have a sister who is a doctor for automatic second opinion and someone who isn’t afraid to say I don’t know and then tell me why she doesn’t know.
The biggest thing my sister says is that there is no real time table or idea how an individual will recover like there is for other injuries or traumas. She says treating someone for PE is very frustrating because to some extent the doctors can only guess as to what is going on. A DVT/PE has such fingering effects to other organs and parts of the body that it really is a bit of a guessing game.
Unfortunately I have had a lot of experiences with doctors in my life and I think something most people forget is that doctors are just people. We all have to remember they don’t have all the answers and a lot of our own recovery is our responsibility. With that said, doctors who aren’t giving you the time or attention you feel you need then speak up. I once told an orthopedic surgeon that wouldn’t answer my questions and had a high opinion of himself that he was nothing more then a fancy carpenter. That really made him upset but he began answering my questions.
Dear Sara, Thank you for your post on March as Blood Clot Awareness Month. This week has been the one year anniversary for me of being in the ICU and almost dying from a massive pulmonary embolism. This has been a rough year as this community well understands. Yes, I had the anemia from heparin induced thombocytopenia (which destroys one’s platelets) for three months. Yes, I have had extreme exhaustion like nothing I’ve experienced before where I simply have to stop and go take a nap. Yes, I have had trouble sleeping and started staying up to 3, 4, even 5 a.m. regularly. In my case, this was probably due to anxiety about my mortality. Yes, I’ve had ups and downs within the recovery that were discouraging. Yes, I still have pulmonary hypertension from my heart being so dilated a year ago. Yes, I still experience shortness of breath with exertion. This is a huge, huge improvement over shortness of breath from taking even one step or just turning my body in the hospital bed. But, yes, I’m improving! Slowly and sometimes with setbacks, but YES, I’m improving. I’m even starting to have times I believe my body is going to get back to “normal”. So, I’m feeling hopeful. And, I thank Sara and this community to contributing to that with the notes of courage and encouragement for each of you. Your stories are all powerful healers for the rest of us.
One thing that I want to share is that I’m now using a 75 cm exercise ball as my desk chair. It keeps my ankles, legs, back and waist doing lots of small movements and even fairly large ones such as what I call the hula during all the hours I’m at the computer working. There are no pressure points behind by thighs from a chair. I LOVE it! And, I believe it helps reduce the risk of new clots in the legs. Has anyone else tried it?
Another thing I’d like to share is related to the case study I’m still working on where there was miscommunications and missed diagnoses that jeopardized my life those first 24 hours. I am now corresponding with a wonderful person who has served on the Internal Review Board at one of the top hospitals in the country. He recommended two books for me to read: Safe Patients, Smart Hospitals by Dr. Pronovost and The Checklist Manisfesto by Dr. Gawande. Both are incredibly enlightening about how the hospitals can and are improving their procedures and communications with results that save many lives and can save hospitals millions of dollars. I am especially intrigued by the checklist which has been used by pilots since 1935 being applied to hospitals. For instance, if there had been better hand-off checklists I believe the seriousness of my situation would have been recognized in a much shorter time resulting in less strain to my heart which in turn would mean a faster and shorter recovery. Well worth reading since PE is a diagnosis that is missed so often and too many times when it is too late.
You’re welcome for the post Cathy! I should be thanking YOU for all you have shared with us. It is very helpful. You know, I have not tried one of the exercise balls as a chair, but I do have one (clearly that I am not using for exercise right now!) so I will give it a try. I seem to spend a lot of time at the computer anyway so that is a great idea. Thank you!
I am so happy you shared that you are improving and what you have been going through too. That is truly a message of hope and healing for this community. Thank you for being a part of it.
Also, thank you for the book recommendations. I am always looking for things to add to my list and the checklist idea does sound intriguing. I am always looking for more knowledge so it is very much appreciated.
Be well and talk to you soon! 🙂
Sara, Just a note on the exercise ball. The 75 cm ball is the right height as a chair. I first bought a 65 cm ball because that is the right size for my 5′-6″ height for the exercises. The 75 cm ball is for taller people to exercise with, but is also the right size to sit high enough at a desk. Enjoy!
Today marks the 4th month since being released from the hospital. In that time I have been so tired I couldn’t walk down my 75′ driveway without sitting down, have felt the sting of a blood draw at least 50 times, spent more time with my doctor then I have since I first went to her for a check up over 10 years ago, heard more words that end in osis then I can remember and learned more about the pulmonary system then I really cared to.
During the 4 months I have had great encouragement from Sara and those on this board, friends and people I have never met. The encouragement has come to fruition, over the last two weeks my energy levels have tripled, my doctors are surprised at how good my lungs sound and generally feel the best I have in 6 months. While I am not out of the woods, I get reminded of this every time I see the hematologist; I am as my sister pointed out now riding with a tail wind.
With all this good news I still feel bas. I was diagnosed with acute bi-lateral Pulmonary Embolism. If it wasn’t for a freak bicycle crash in a late fall race I would never had paid any more attention to my slowly dimensioning energy level and that pulled muscle in my leg and should have as my doctor sister said last week when she was visiting woke up dead one morning. The reason I feel bad is that many of you are still struggling, still hoping to just feel a little better or just to get some sleep. I don’t know and the doctors don’t know why I suddenly just started feeling better but I have and in a way I feel guilty I have come back so fast. I hope everyone on this board gets better quickly and can get back to the life they want.
Hi Tim! I am so happy to hear you are feeling better – THIS is what it is all about!! Thank you for your kind words about the site and the people here.
I understand why you feel bad at times. I have experienced it myself when I read about people who are suffering as horribly as I was in the beginning. I also think it is sometimes a type of Survivor’s Guilt we share, as I have in fact wondered why am I here, but someone else who had the same thing happen to him/her is not. It is hard to look at where we are sometimes and see someone else still struggling so much or even facing more complicated issues. I have been there myself many times. And, as you well know, I started this site because I wanted to let others know they are indeed NOT alone and it DOES get better. Maybe not today, maybe not tomorrow or even the next day or week or month or year in some cases, but it does get better.
And that, my friend, is what you should be proud of. You are here for a reason and you talking about how you feel better or how you have improved in health and in getting back to the things you love just goes to further that message that yes, friends, this does get better. You bring hope to others who may be lacking when they see, “Tim did it, so can I. Tim is feeling better, maybe I can too, his story was a lot like mine.” So, yes, it is normal to feel the way you do from time to time, but when it gets you down, just remember what good you do. You coming back to this place and even saying what you did is proof that you want to see others get well too and let them know they are not alone on this journey. Not everyone would take the time to share that! You never now who you may have touched with one small comment, you just never know how big of an impact it really makes!
What your sister said really hits home. We were given another chance by still being here. Thanks for being a part of this community one and all!
Hi Tim,
I have read everyone’s stories here and followed along with their progress. I even read your longer story. I’m so happy to know you are feeling better. To suddenly start feeling “normal” again must be so exciting! Don’t feel badly….we will get there eventually too! Just don’t push yourself too much! One thing I’ve learned is we really have to listen to our bodies. And thanks for sharing so much of your recovery. I often find myself telling people I’m fine when I’m feeling weird things not because the doctors tell me I’m fine….but because I’ve read it on this blog and you all have experienced the same thing. Best of luck!
Carole,
Thank you. I am feeling much, much better these days and I am paying very close attention to myself. My next step is another CT scan for my aneurism which my docs are attributing to the acute bi-lateral PE. Right now I am keeping my first half hour on the bike to less then 140 bpm HR, after that the adrenal spike will level off and away I go. I have been able to keep a 165 bpm HR for an hour these days. The slow warm up and a slow warm down has reduced the chest pain and pressure I used to feel in my chest. My right leg where the clots were still give me trouble and actually limit me more then breathing. In a couple weeks I will be 5 months since I was admitted. It has been a long tough winter and I really do think of everyone on this post constantly. I need to get a picture with my Clot Buster racing jersey to share with the group. Take care and keep pedaling forward.
Yay for the Clot Buster Jersey! Can’t wait to see your picture. Glad to hear you are feeling well. 😀
Hey. I’ve been reading these posts but never commented. My name is John. I’m from northern Alberta Canada. I was diagnosed with (so far) idiopathic multiple pulmonary embolisms and they have said that there is enlargement of the right side of my heart, but the echocardiographer as well as my GP seem to be pretty relaxed and sort of not concerned, so maybe the extent of the enlargement is not cause for alarm…
Since my diagnosis a week ago, I’ve been devastated. I’m 32 in less than two months, and I’ve lost 50 lbs and got into good shape over the last year. 5’10 and 180 lbs. love to run and stay active, weights, fitness classes etc. seems to me it’s a quite common thing for people with athletic tendencies to develop these embolisms. I enjoyed reading your stories, and they have helped in the battle for sanity that I’ve been fighting this last week. I’m terrified that my heart is damaged and that my life is going to be shortened.
Since I found out about the embolism (which was just sort of a slow decline in my ability to work out any amount and noticing that I couldn’t focus, felt dizzy and shorter of breath, culminating in a fitness class one day where I was unable to carry on and was turning “grey”), I feel like I’ve been on the decline. Did anyone experience wicked headaches and dizziness that made doing anything but lying down all but impossible? I also have really short breath now, way worse since the start of my treatment. 🙁 I kind of need to get back to work. How long did you folks end up flat on your back? Anyone worried about a reduced quality of life due to heart problems? Thanks for being out there to listen. Hope to hear from you all soon.
John in Alberta
Hello John in Alberta! Thank you for being here. And first let me say, welcome to our community! While I am not glad these circumstances bring us together, I am glad you are here with us.
I have not experienced heart problems per say, BUT I do know pulmonary embolisms can cause extensive damage to the hear by their very nature. When they travel through the heart (which they seem to do more than not from what I have read) they cause damage to the valves and it takes a great deal of time to heal from that kind of damage. I would say (and as you know, I am not a doctor), but what you are feeling in terms of recovery is very normal considering that your heart sounds like it was damaged during the PE’s. I think that may be why your heart is enlarged because of damage? But I could be wrong as that is what I have heard from others. I also know that hearts can heal! I know they can heal from the damage. Lungs, not so much, the lung just sort of compensates for the damage that was done and begins functioning again without too much of a problem. It takes time.
What I do know is that you and I (and others here) have a similar story. I was 29 at the time of my PE, had lost about 65 pounds, had run several half marathons and a full and was in better shape than I had been previously in my adult life. This took me off guard, completely. I felt like my life was OVER. I did not know how I was going to go on. It was very devastating to me. I could not do anything I once did, not even breathe on my own (I was discharged from the hospital on oxygen). Everything hurt and everything took all of my strength, everyday.
I personally (and everyone is different) could not do much but lay around for a month after my PE. I went back to work after a month and worked for three before I lost my job. It was a high-stress, intense job that I was in training for anyway and I just could not do it given the circumstances. It has been hard for me to get back on my feet physically and from the devastation of losing my job and all that comes with that. I do know that recovery can take a long time (particularity if the heart is effected) and I do know that it gets better. I am nearly two years out at this point and I feel more like myself than I have since it happened. At six months, I felt noticeably different then at a year. When I look back from now to where I was, I don’t recognize the person I was then. I thought I would be that way forever, but as it turns out, I am healing. 🙂 It has been the single most terrifying experience of my life, though. Now, while physically I am much better, I am dealing with some emotional issues about what happened to me and that is the next thing I will have to work through.
I remember where I was a week out of the hospital. Yes, I could not breathe, which is why I was on oxygen. I could not sleep, eat, move, talk. I felt completely helpless and betrayed by my body after I had tried to hard to take care of it. I just cried and begged someone to cut my leg off because it still hurt so bad from the DVT. There was no way to rest. I barely existed. I think where you are right now is a very normal place to be. This just happened to you. I feel where you are completely and I am sending warm thoughts your way. I do know you will get better as time goes on. What you and I and the others here have suffered is SO traumatic to our bodies, it’s takes a long time to make progress. I’m not saying any of this to discourage you, but to let you know I’ve been where you are and maybe weeks, months or a year down the line (like me) you WILL feel different than you do now!
Keep in touch. Thinking of you!
Hi John, Welcome! Sara addressed so many things, but I thought I’d add a few things about the heart and why the right side in particular becomes enlarged with PE. Think of the heart as a closed loop pump in a “figure 8” shape. The oxygen rich blood comes into the left side of the heart from the lungs, then is pumped into all parts of the body to supply all our cells with oxygen. The blood now depleted of oxygen returns to the right side of the heart where it is pumped into the lungs to retrieve more oxygen. The oxygen rich blood is pushed to the left side of the heart and the cycle starts again. The emboli in the lungs’ arteries block that pumping action sometimes to a great extent. The right side of the heart has to pump much, much harder against this blockage. (I think of trying to blow up a new balloon.) The strain this causes on the right side of the heart causes it to dilate. My right ventricle was twice the size of the left ventricle when it was measured by an echocardiogram just hours before receiving the tPA that broke up the clots in my lungs. The right ventricle is normally about 2/3’s the size of the left so this means it was enlarged by 3 times its normal size! The heart cannot sustain this level of strain for very long and is the primary cause of death from PE. The ICU doctor said my heart may never go back to normal because it was stretched so much but it would recover a lot once the emboli blockage is removed. For many people the heart goes back to normal given time. They can measure the pressure in the pulmonary artery to see how hard the right ventricle is working. Mine was at 66 mmHg in the ICU. A year later it is at 42 mmHG. Anything over 25 mmHG is considered high. The cardiologist felt pretty good about this and told me it just needs more time. After all, the heart is a muscle and strained muscles do recover if you take care of them.
And, yes, I am quite concerned about the long term impact of this strain and whether it has shortened my life expectancy. It is extremely important to diagnose a PE as soon as possible so the heart does not go through this extreme strain and the time it is under strain is shortened. In my case study I can show how better communications and procedures at the hospital would have shortened that strain from 24 hours to 9 hours after my arrival at the hospital. My heart would not have become so dilated and my recovery would be much faster and perhaps more complete. And, maybe if I were better educated on the symptoms of PE and how to prevent DVT’s I would have gone to the hospital sooner!
There is some great info, here, Cathy! Just wanted to express my thanks for sharing with this site. 🙂
I went to an E N T. he asked if I was ‘confabulating’ all of this. got me so mad. Sure, I love being hooked up to oxygen and struggling to breathe.I love having my hands shake so bad I have to have a waitress help me pour coffee into the cup. Has anyone done pulmonary rehab? I heard of it. don’t know much about it. Would love feedback.
I am sorry to hear of this, Sue! I have not been to pulmonary rehab, but hopefully we can find some others who have. If I get any info, I will pass it along.
Thinking of you!
And, that is horrible that he said that! Has me pretty upset myself…..
Sue, That doctor sounds like a burnt-out, cynical, incompetent doctor to have said something like to you. I’d run out of his office and never look back! There are good doctors out. I have been thinking I need to go to a pulmonologist now and see if they can tell me what damage my lungs have sustained and what can be done about it. I don’t think an ENT would have any clue about all that. An RN advised me to blow up balloons to help strengthen the lungs. I have a pack of balloons in my desk drawer but haven’t made it a regular daily exercise.
I’m Sue’s husband. Sure. She’s making it all up. Right. Hooked up to oxygen 24/7. 60-foot tubing so she can walk around the house. Can’t go out without carrying the portable tank. Enough medications to stock a small pharmacy. Do you know that when we go into the local pharmacy to refill her prescriptions or to drop of new ones, that they say, “Hi, Sue!” Pretty bad when the pharmacy knows you by your first name.
She can’t do the job she loves (Nursing), can’t do her gardening, can’t take a walk around the block… even when we go out to dinner at a restaurant, it’s enough for her to do that, we have to go right home so she can lie down. Takes all of her energy.
So, she’s making it all up. Sure she is. The oxygen equipment is prescribed by physicians. They wouldn’t do that if you were making it all up. They’re not going to prescribe dozens of medications if you were making it all up. Yet, of all the doctors we’ve been to during the past six months or so, not one has had any definitive answer for us. All the tests, which have all been repeated at least three times, show no new clots, nothing going on at all to indicate why she’s still having problems. They all throw up their hands and say “we don’t know”.
Pulmo guy says “lungs are clear”; Cardio guy says “heart is fine”. Tests and scans all show nothing unusual, nothing to show why these problems are still ongoing. I think the only type of practitioner we haven’t been to yet is a “Shaman”.
She says she’s tired of the doctors. Doesn’t want to see more of them who will only say they can’t find anything. I get that. But I say keep going, because, maybe, the next one may have an answer. Maybe there’s still something we haven’t done.
Mark and Sue, A friend of mine who is a retired RN just spent a week at John Hopkins. Her health situation is rather complicated like yours. She was most impressed by their multidisciplinary approach. They schedule all the tests and appointments. Then all the doctors have a meeting to discuss and decide on the best approach for your situation. She was most impressed with everything they did. She has helped me so much by being with me when I’ve had tests or needed to visit the ER. (It is really neat to see the attention you get when you bring your own RN with you!) Hang in there, both of you! Like something that is lost it is always the last place you look that you find what you’re looking for.
Hi Mark and welcome. I can really relate to yours and Sue’s frustration. I think my husband would relate to what you have said too.
After my hospitalization, I could not walk around. I could not go without oxygen for a little over a month – it went everywhere with me. I went to dinner once and had so much (excuse the detail) bleeding that my husband and I left shortly after coming in the door. Making a sandwich felt like the death of me. I lost the one job I ever loved – I’ll never be able to do that again. I switched pharmacies because the memory of being known like I was there was too much to handle at the time (I had to sit there for hours once and could barely breathe). My relationships suffered. I would rather have been gone at times than deal with the pain I was in. Sue is not alone! And neither are you.
So no, we know here Sue is most definitely not making it up. I am sorry to hear of yet another person going through this. I wish we could help in some way. I started this community so that others would have a place to share, learn and connect, even if we didn’t have all the answers. I wanted a safe place where no would say “that can’t be” or “you certainly wouldn’t feel that way.” No, not here. Here is safe to vent your frustrations and have your fears, pains, challenges – a place to have your feelings and the feelings of the ones you love validated. You’re both on my mind. This is a horrible thing and I personally don’t think Sue is making anything she is feeling up – doctors don’t always understand that unfortunately. I was fortunate enough to have a doctor who said it could take up to 2 years to recover from this and I will say, it has taken every bit of that time to even feel close to my old self again. I know I did not feel any better for about 6 months after my hospitalization.
Sue is a valuable asset to this community too. I’m glad you’re both here. I’ll keep hoping someone can help or that Sue starts to heal and feel some relief. We all do!
And you are valuable to her because you have not given up hope. That takes a strong person – both of you!
Keep in touch.
No, I won’t give up and I keep telling her that. I waited 30 years to get her and I’m not going to give up just because she has a few health issues. I tell her that at some point this will be past her. I just don’t know when that will be. It’s been about 6 months already, just about. Even if it’s a year or two years before it’s over, at least you can PLAN for that. Great, I can get a job then, go on a vacation, whatever. But so far, nobody has ANY answers. That is the frustrating part. She says “no more doctors, I’m tired of more doctors and nobody knows anything.” But… what if… what if the NEXT doctor is the one with the answer? Gotta keep trying.
I admire what you are doing for her, Mark, and your outlook! Most definitely do not give up. And, speaking as a patient who has been through this so far, it is easy to give up at times. Sue is lucky to have a person who will keep fighting for her when she is feeling down! Someday I too think this will all be behind her, but it is so difficult in the meantime. Warm thoughts to you both.
Sue, here is what some people had to say when I asked (anonymously) on the page re: pulmonary rehab-
– I believe my aunt did pulmonary rehab, she had pulmonary hypertension. Sounds like you might benefit from it. I hope things get better for you.
-I hate doctors. I’ve had multiple pulmonary embolisms and they still think I’m lying when I say I’m in pain and can’t breathe. One doctor recommended I take a Tylenol. Ha! It’s infuriating! It’s easy to dismiss the symptoms when you aren’t the one in pain and suffering. I hope everything gets better for you! I understand the frustration
-Pulmonary rehab can do wonders. The body created a new blood supply if needed. This can help tremendously. It has been amazing to see my body develop and grow new veins!! PT aka pulmonary rehab can help with this!
thanks for the reply. It is really appreciated
Hi Sue,
I honestly think I would have punched that guy after making such a ridiculous comment. It reminded me of my sister’s ob/gyn who yelled at my sister and told her she was being a baby when she yelled out during labor/delivery. The day HE pushes an over 9lb baby out of him is the ONLY time he can comment on what she was feeling. The same applies to your doctor. When/if he ever experiences what you did is the absolute only time he can make statements about how you are feeling, unless it’s to give you legitimate medical advice. and to be honest, he’d be off my list of “professionals” immediately. Good luck and best wishes for answers and recovery soon!
Hi Sue,
I honestly think I would have punched that guy after making such a ridiculous comment. It reminded me of my sister’s ob/gyn who yelled at my sister and told her she was being a baby when she yelled out during labor/delivery. The day HE pushes an over 9lb baby out of him is the ONLY time he can comment on what she was feeling. The same applies to your doctor. When/if he ever experiences what you did is the absolute only time he can make statements about how you are feeling, unless it’s to give you legitimate medical advice. and to be honest, he’d be off my list of “professionals” immediately. Good luck and best wishes for answers and recovery soon!
Hi John
I was diagnosed with multiple PE’s in November and nearly 4 months later I’m still suffering with the headaches and dizziness so I can totally understand how you feel. I live in the UK and they don’t seem to give you any advice on how to live while dealing with these blood clots so its been a case of trying to figure out how to cope with it. The general concensus is that “oh you are on warfarin so that should sort it out!” The exhaustion is an absolute killer and its so frustrating when I get half way through a shower and suddenly realise I don’t have the energy to finish it. We just have to believe that we will improve and take heart from all the people on here who have made a full recovery. Good luck
Thank you guys. The responses are overwhelming. I really appreciate it. I have no knowledge of how much pressure my heart is running or what kind of damage I have sustained, but I never received a clot buster. Just enoxaparin shots followed by the warfarin. Been on for about a week now and I feel like things are kind of getting worse. Did any of you experience this when you started?
John, tPA, the clot buster, while incredibly effective and fast in breaking up clots, is also a very dangerous drug because of the bleeding risk. tPA itself has a mortality rate of 6% because of this risk. With my heart dilated to the extent it was, my mortality rate at that point was at least 35%. This is not speculation on my part. It is from a much cited research study published by the American Heart Association. At that point, without the tPA, I had a 1 in 3 chance of dying in the hospital that day. And, with the continued strain the mortality rate would just continue to rise. When the ICU doctor explained the risks to me, I could see in her eyes how difficult it was for her to say my best chance was with such a dangerous drug. It was almost instantly effective and in a couple of hours I was feeling much better and my soul had stopped talking about leaving. I stayed in the ICU another day so they could monitor the bleeding risk and they felt I was finally out of immediate danger. So, to me, the fact they felt you didn’t need need tPA and that slower acting, but much less dangerous blood thinners could be used is probably a good thing.
Hi John
I also was only given the Enoxaparin and Warfarin too. I’m still feeling pretty bad myself but perhaps we feel worse now we are home because its harder to accept the limitations our bodies have put on us. I get so frustrated by the breathlessness and the fact that I just can’t do the things that need doing round my house. I feel I should be better by now but have had to accept the fact that it will take as long as it takes
Hi John
I thought I would just message you about the fact you said you were having headaches and dizziness because I have had the same thing. I went to my doctors yesterday about it and she said my blood pressure was really low and it had probably been caused by the warfarin. So it may be worth mentioning it to your doctor . I hope this helps you
Thanks for the support. Does anyone ever feel really breathless after waking? It seems as though my blood pressure is generally ok though I do get a racing pulse at times. I’m glad to have people who have gone through this here for support. What about you, Sara? You’re close to my age. Did you experience anything that made you fear that you had sustained any heart damage at first? I’m still struggling with doctors on this one.
Hi John! I knew from the beginning (at my first doctor’s appointment after I was discharged) that my heart was damaged to some extent when my doctor explained I was looking at a 1-2 year recovery period. He said that was because almost all PE’s travel through the heart and cause some sort of damage.
I did feel like my heart was damaged. I did not have pain in my chest, but I was on oxygen for a month after discharge (which helped). I could not walk up stairs without getting breathless and to this day, I still struggle with physical fitness. I used to run miles and miles and now I barely have a desire to most days because it hurts so bad. I know part of that is starting over, but I also think my body is different now than it was before. I would get breathless when talking and anytime I moved around the house – even a few steps to the kitchen.
Don’t give up, if you don’t think your doctors are helping like they should, see if you can talk to someone else. I do think part of what you are feeling now is normal for recovery, but if you are having chest pains or difficulty breathing, keep checking with your doctors. Those things should start to diminish over time.
Thanks Sara. Did the doctors mention any enlargement in your case? I don’t mean to keep asking the questions, it just makes me feel good to hear a story from another survivor about the situation. I just get scared that something different is going on because of the enlargement of my heart and the worsening symptoms after starting my treatment. Thank you so very much once again for listening and talking with me.
Please don’t apologize for asking questions!! I don’t mind at all and either do the other people here. I just might not always get back to you as quick as I would like, but I will try my best. 🙂
I do not know if my heart was enlarged. I did not hear that, but I also did not ask that. I do know the first month to three months out of the hospital I felt miserable. I thought if it was always going to be that way, why did I even bother to survive?! It was painful, I felt alone, I thought it would never get better.
It is slightly concerning to me that you have not felt any relief yet, but I am not surprised if that makes sense. Your body went through a major trauma that it may not know how to deal with/heal yet. If your symptoms persist (especially chest pains) let your doctor know again. In the beginning, I called my doctor a lot. One time I thought it was nothing, but I was having lung pain again. It turned out to be pluerisy (inflammation) and I was admitted yet again. I did not want to call, but I’m glad I did.
I’m sorry you are feeling the way you are, truly. You’re not alone either. Are you on Facebook by chance? We have a community that is always chatting over there too. Some people are there and here and some are just here (so it doesn’t matter one way or another! We’re just glad you’re here is what I am saying).
How have you felt these last few days? Sleeping/sitting slightly propped help with my lung pain. Are you able to do that too?
I am not on there but it’s a shame because it’s good to talk about it with someone. I’m having trouble getting anything out of the doctors regarding my heart and can’t see a specialist until next week
I understand your frustration with that! What are they telling you about your heart? Are they not concerned?
There is still a great community here to talk to – there are several others not on Facebook who come here to talk!
Hi Debbie I still suffer with headaches and dizzy spells plus more symptoms and I have trouble washing my hair in the shower it takes my breath away some days I have trouble brushing my hair. It’s so frustrating to not be able to do normal daily things that we took for granted before. It wasn’t until I realised I can’t do these things that it hit me to how sick I am. I was 8 weeks pregnant when we found my pe’s and was told I have to inject my pregnant belly.
Hi Sarah g
Ooh I wouldn’t have liked to have to inject my tummy while knowing I was pregnant. You were very brave doing that although the needle is tiny isn’t it. I think what I have found the hardest was not having any information about how to live and deal with this illness after being discharged from the hospital. I finally had my first hospital appointment on the 18th March and the consultant really put my mind at rest that I am really sick and not to expect to feel any better for at least another 2-3 months which seems like ages as I was hospitalised on the 7th November. I would get so frustrated with myself because of the dizziness and exhaustion but now I know that it is normal so I will learn to take things as it comes and just believe that I will get better when I do
Hey. Update. I got my echocardiogram result (a copy from my radiologist, because my doc didn’t show me) and it states that I have a severely enlarged right ventricle. To me, that’s a pretty serious concern, and one that needs to be addressed. I’m thinking tomorrow of driving the 300 miles to Edmonton to see the fine doctors at the university of Alberta hospital. I keep getting passed off as “anxious” here and the decline in the way I feel as far as short of breath (especially while laying), palpitations and dizzy/nausea/confusion warrants the drive out. I’ll try to keep you guys posted when I get some straight answers. I hope I’m not too far off topic here, as the embolisms seem to be only a part of the problem or a symptom of something else maybe. Thanks again for listening.
John, This is not off topic in this forum! The dilated right ventricle is a direct result of the pulmonary embolism and therefore part of your recovery. I, for one, am extremely interested in what you find out in Edmonton since my situation is quite similar. When my cardiologist didn’t seem very concerned about all this, I got the feeling they don’t get excited until your heart has failed and they are bringing in the crash cart. When he said see you in a month, I asked if we were going to get the diagnosis before I die. He said he wouldn’t let that happen. But, when I reminded him that a dilated heart can lead to sudden death, he conceded that I had a point there. This is real and you need to get some straight answers. And, sharing them here will help the rest of us, too. Knowledge is the best way to deal with our fears. I do take solace in the fact so many heart conditions are reversed with the right care.
Carole is right – nothing is off topic when we are dealing with this! You never know who else you might help with what you are going through. I think it might all be related in some way and I hope you get those answers to what is really going on.
Hey! I’m glad to contribute. I’m also happy to hear that I’m not the only one in a similar situation or with similar fears involving the right ventricle. The way that my embolism was discovered was first by finding the enlargement of the heart which lead to the diagnosis of a PE this makes me fear that maybe my heart has been struggling for a while because I was functioning relatively normally for who knows how long before they found anything. Had been feeling like garbage since New Years progressively. Also, the onset of worse symptoms after initial treatment gives me cause for concern. I just don’t trust the local doctors enough with the way I’ve been treated, so I feel like it’s time to try my best to make things happen faster and learn what I deserve to know. Thanks for hearing me out again.
John
John, Two things which I hope the Edmonton doctors do. Have you had a CT Scan of your chest in confirm the PE’s and how extensive they are? My understanding is that is the only way PE’s can be absolutely confirmed and that they can measure the extent of the emboli. Second, have you had venous doppler (ultrasound of the lower extremities) to see if you have any clots in your legs? I carry around a laminated picture of my CT Scan showing the two main emboli that look like two huge, fat caterpillars. And, I have one by my computer to remind me to get up and get moving! It’s a great motivator for me!
Hope you’re getting the answers you need. It makes me sick to hear from you and others that the doctors aren’t taking you seriously or they feel you are being too anxious about it all! They might have a different attitude if they had the personal experience with PE. It sure is hard to have people understand what we are going through — even the medical professionals.
I have had a ct that revealed several small clots in my lungs but haven’t seen it myself. I have never had a Doppler of my legs. They didn’t seem too concerned with where the clots came from even :/ — oh well, I’m in Edmonton now and heading to the university in the morning to see if I can get some answers or better insight!
Hi John, Good luck tomorrow. I just checked the Mayo Clinic website on enlarged heart. They talk about one of the complications of enlarged heart is that the heart is more susceptible to forming small clots in the lining of the heart. If they form in the right side of the heart they can move into the lungs. So, the PE might actually be a symptom not the cause of the enlarged heart. Only a small clot burden in your lungs is unlikely to cause the strain that would enlarge the heart. There has to be enough clotting in the main pulmonary arteries to actually block the flow of blood to have the heart enlarge from the PE. And, I have no medical training so it is not my intent to confuse things, but just trying to help you ask the right questions of the doctors. I’m a big advocate of being an insistent patient. You’re the person that knows you the best and there needs to be synergy between what you know about yourself and the doctors’ expertise to get to the right diagnosis and the right treatment. We’ll all be thinking of you tomorrow!
http://www.mayoclinic.org/diseases-conditions/enlarged-heart/basics/complications/con-20034346
Hi John! I am glad to hear you made it to Edmonton safely and are trying to get some answers. I agree with your concern and would feel the same way as you! I hope you can find some. Keep us updated. Maybe they can also check for clotting disorders if they haven’t before? I hope you can get some insight and answers. This is rough. Thinking of you tonight and in the morning!
Yeah. I was kind of aware of all that. Hoping it wasn’t true but I guess I’ll have to see. I’ll let you all know.
I was diagnosed with PE in late January. They did a thrombosis ultra sound but didn’t find any clots. They think the clots came from having a D&C in late December 2013 followed by a progesterone treatment to prevent uterine cancer. When I was diagnosed with the PE I called my OB/GYN and she stopped the progesterone treatment. I have been having significant soarness from head to toe as well as pretty significant muscle and body aches. Even whey just sitting, my pain level can be a 6-7 on a ten point scale. It’s a 10 if you touch me. Joints are a 10 all the time. Have others experienced this as related to their PE’s?
Welcome Sari! We are glad you are here. I was in severe pain after my PE for a solid two months (touching me hurt then too). It sounds like you may have some autoimmune things going on, but I am not a doctor. Have they checked for any type of clotting factors that could be contributing? Sometimes unfortunately those can be overlooked. That might be beneficial to you as well. I will ask around and see if I can find out any additional information for you. I am sorry to hear of your pain, but glad you found us! Keep us updated.
I posted your concern (anonymously) our Facebook Group and here are some responses for you:
– That sounds complicated. You need help from someone knowledgeable about all the body systems and nutrition not just specialists trained to dispense drugs and surgery . Someone would need to know the WHOLE picture to comment wisely. I’m no expert but the supplement SAM-e may help joints. I just ordered some have not tried it yet but read good things. Bless you.
– I was diagnosed with a PE in December and underwent a DC as we lost our baby too. I had so many aches and pains around my breast bones and back and the Dr at the time said it was just muscle related. Of course I thought it was more, but after 9 weeks the pain is not as bad and every day is better then the last. I had my specialist appointment and he said I had some inflammation around the area. I found this site to be so comforting as a Dr can tell you one thing but asking the people on this site who had already been through it I found myself feeling a little better and normal. I thank everyone and wish you the best of luck. Always see your Dr if you feel uncomfortable, I was given a medication for the nerve pain and anxiety.
– Please get a detailed exam. As a PA and a massive clot survivor (mine stopped all blood flow from the top of my body on Nov 1), I could go through the many things this could be and what needs to be done to make sure you are okay, but the truth is a good internist should be able to handle this, too. I wouldn’t recommend anything not FDA regulated until you are more checked out. Be on the safe side. God bless you. . Your health is too important to go by what has happened with others.
-Which blood thinner are you on? I had bad side effects while on warfarin. Lots of aches and pains…
Hey guys. No news. Sent away from here as well in edmonton. I have an appointment with an internist in Wednesday morning. I’ll update then. Hope everyone is well.
John
Hey John! Great to hear from you, but sad to hear you don’t have any answers yet. You’ll be on my mind until you do! Thanks for the update. I was wondering how it went when I logged in tonight and saw your message. 😀
I went into the ER 2/4/14 with severe SOB & absolute exhaustion. (I thought I had bronchitis or.) Turns out I had 3 massive PE’s in both lungs. I was admitted to ICU and given tPA. Spent 10 days total in hospital, 3 (or 4 ?) f those days were in ICU. The first 24 hrs, hubby didn’t know if I was going to make it.
I have been home now 4 weeks. I asked my PCP for a script for PT and she agreed. I am going 2x p/week – doing just very simple things and they make me tired. I still get SOB just walking to the mailbox. I had a Dr appointment last week and thought, what the heck, (I was having a good day) I am out and about, might as well go to WalMart and get a few things. (I only went in b/c I was able to find a parking spot close to the door & I knew that what I needed was close to the front door. ) I was exhausted for 3 days after that. My arms ached after from pushing the shopping cart !
I have good days and bad days, but the bad days I’m just exhausted and an emotional mess. I cry at the drop of a hat. People ask me how I am doing, but I don’t think they really want to hear what I really feel like saying. LOL That includes my spouse. He is a great guy & I love him dearly, but he doesn’t get it. We have 4 kids (all in school) but by 4 pm, I am done. Exhausted and an emotional mess and the kids have just gotten home. When I tell him I’m tired, he wants to know why, what did I do? OMG! Really? He thinks I should be able to walk further than the mailbox and wants me to ask my Dr why I can’t do that yet. (It was my understanding that it could take 3-6 months before I was feeling better and that some patients still have lingering issues 12 months out. DH heard/understood that I would be totally back to normal in 3-6 months.
I think part of MY problem is that he has gotten back to normal, gone back to work and moved on and here I sit, exhausted, emotional, frustrated and searching for answers.
Thank you for sharing your story. I feel so much better knowing it is not just me and that I am probably right where most people are/were 4-5 weeks out. Now to get my hubby to understand all this.
Elisabethann, I can’t match the kind words and encouragement that Sara has for each of us, but I want to comment to you because it sounds like your experience sounds in many ways like what I went through. I had a Massive PE and extensive emboli throughout the pulmonary and distal arteries. They even said it was a saddle embolism. I was very fortunate to survive the first 24 hours and to receive the tPA. When they add the word “Massive” in front of PE it means the stress on your body is incredible — lack of oxygen to every cell in your body, tremendous heart strain. The word MASSIVE has two definitions: a) pulmonary vascular obstruction over 50% b) obstruction creating hypotension and/or cardiogenic shock. I, too, thought the recovery would be something like six months. Not for Massive PE’s! Sara was told by her doctor it may take 1 to 2 years to recover. I’m just past the anniversary of my PE and I have not fully recovered — still tired, still feel like my brain is too slow, still short of breath — but doing much better. I think the recovery from a massive PE is more like that of a stroke victim where 18 months or more is quite common. I want to do some more research on the long term impact of the tPA. After the clots are busted up I think it still means there is a lot of flotsam in your blood stream that perhaps can potentially cause scarring in the lungs. I want to find out more about what happens. I lost half the platelets in my body which made me anemic and just that took six months to get back to normal. I still have pulmonary hypertension that I hope will get back to normal in this next year although it may never fully recover because of the extent of the dilation of the right ventricle. As you have found out there doesn’t seem to be a lot of information about what to expect in the recovery and I’ve found this blog a wonderful resource. It would be good for your husband to read some of the stories in the blog to help his understanding of the reality of what you are dealing with.
One thing that was a big help to me was to give myself permission to take a nap after lunch for a couple of hours. Our batteries are run down and need more frequent recharging. For me, my body told me the nap was imperative. It wasn’t a case of mind over body. The body was going to win this every time.
And, the emotional side again is quite expected. For me, it was about addressing my mortality and feeling anxious about even going to sleep. Some of it was feeling so overwhelmed by the exhaustion and the pressure to still carry on and working to earn a living. And, the fact that others even those very close to you that love you just can’t understand what this all feels like.
I always like the analogy with the Flight Attendants on an airline telling you to put the oxygen mask on yourself before you try to help others with theirs. In this case, you might even want to take that quite literally. A lot of us went home on oxygen! But, more than that, be kind to yourself.
Be patient. It will get better. Thank you for sharing your story. I am very appreciative that your took the time to share it with all of us.
Howdy,
I was diagnosed with acute bi-lateral PE October 30, 2013 . You can tell your husband that I went from doing ultra distance (50+ miles) mountain bike races to not being able to walk down my 75′ (25 meter) driveway from the PE’s. A month from the day I was released from the hospital it took me over 1-1/2 hours to walk almost just under 2 miles because I had to stop and rest so much.
Your exhausten is real and will take weeks or months to subside. There is a video of me racing on this thread page and you can show your husband that and tell him it had the same affect on me. It took 3+ months before I could get back on a bike.
Take care and we are here when you need us.
Hello Elisabethann and welcome here! We are glad to welcome you to this community, thank you for being here.
Yes, I would say (and as you know I am not a doctor, but sharing my experience and the experience of others here too), you are where you need to be at 4-5 weeks out! I could not do ANYthing for the first month – and I do mean ANYthing!! I could not walk to the mailbox, go to the store or stand in the kitchen to make dinner. I remember my husband took me out to eat one day after I was discharged (my favorite place of all time too) and I couldn’t get out of the car. I saw a group of young women sitting out on the patio (about my age) and I still had my oxygen tank. I would not get out of the car. My husband said, “We can maybe leave your oxygen since we won’t be in long” (the doctor had said we could do that if I felt okay) so that’s what we did. I made it to the counter to order food and we did order, but by the time we got it, I was so weak I could barely walk to the table. I was petrified, in pain, scared and near-panic. I started crying and we took the rest home. I was also in the hospital/ICU for about the same amount of time as you, but I just had a PE on my left side.
I am actually very relieved to hear you have already heard this can be a long recovery period (3 months for some and up to 2 years for others – or even more in some cases) because not many people have heard that and then when it begins to effect them, they are completely shocked to find out (as anyone would be), but yes, you are correct in what you have said about recovery.
I can also relate to you and what you say about your husband. I do not have children so I am in a slightly different situation there, but after about a month, my husband did not understand why I just couldn’t make dinner, clean the house or go places with him. After all, he was back to work and for that first month, I was home all day and yes, I think he thought I was doing nothing. He was not mean about it, but I could tell it really bothered him and it was actually not until I started this site and started sharing other stories that I heard with him that he stated to realize (I think) it was not just me not doing something right. I don’t think he doubted what I was going through, he just did not understand how it could be that intense/long and thought I should have recovered long before I did/have. It is my hope to write more about this aspect of recovery in the future, so do come back and read!
I was an emotional wreck during my recovery (and still can be nearly two years out!). I did not understand the why or how (and still don’t at times) as to why all of this happened to me. I was frustrated that I could not do simple things that I used to like walk up the stairs or stay awake during a half hour tv show. I was angry that my husband and some other people close to me did not understand at times. I put a lot of pressure on myself to “be the person I was before” without giving myself the chance to heal. People really do not understand what we go through, it is not like when people hear about a heart attack or cancer where there has been enough public discussion about them to understand the ramifications. Also, I do not know your age, but I was 29 when this happened and I think a lot of times people just do not think younger people can be “that sick.” They automatically assume you did something to cause it or make it worse, that was hard for me in the beginning. Like you, I stopped saying how I really felt because friends would say a few months or six down the line, “Oh, you’re STILL dealing with that?” like I shouldn’t have been. That was hard to hear, deal with and plays on your emotions majorly.
I think having children that you must care for would bring another dimension to this that is difficult and I’m thinking of you on that. I also admire your strength (because you DO have it)! I can’t imagine that aspect of it so I am wishing you well as you recover. Anyone who is out there, searching for information and sharing what they know I believe has an inner strength that shines through even in a blog comment. It is not easy to talk about this (especially in a ‘public’ forum such as a blog), yet something brought us all here whether it be the desire to heal, to relate or to just know you aren’t losing your mind in all of this. Which, we aren’t. 😉
Thank you for being here, again, and if there is anything else we can do or help with, don’t hesitate to stop back by. Wishing you a peaceful day.
Sara, Elizabethann brings up something that I’m concerned about as well when she talks about having a poor memory. I find it harder to be articulate especially when I need to think on my feet when speaking to others. Words just escape me and some days it seems I can’t put a coherent sentence together. I don’t know if this is from exhaustion, from stress, from lack of oxygen to the brain (perhaps when I went unconscious and had a seizure-like episode in the hospital), from a side effect of the tPA or other drugs, or all the above. When I hear about people recovering from a minor stroke they talk about these sorts of problems and it taking 18 months or more before their brain gets back to normal. I’m wondering if others have dealt with this issue in their recovery.
And, Elisabethann, thank you so much for sharing your story here.
Hi Cathy. I am glad you brought this up. Nicloa just mentioned struggling with memory in a comment about and I would like to say YES, I have severe problems with my memory at times! I thought it was attributed to the APS, but I am not sure in my case. My friends and family have noticed and it is partially the reason that cost me my job. I know exactly what you mean when you talk about having trouble thinking on your feet or articulating – it happened to me!
I think it may have many factors. I was on prednisone for awhile and that can make it hard to focus, which could come across as memory issues, however, I have not been on prednisone for a long time and still struggle with my memory. I think it may also have something to do with going through such a traumatic event – physically and emotionally. Words escape me to this day – in the middle of a sentence or thought. I have noticed is is compounded it I am upset, tired or stressed, which is why I question how much of it is actually psychological and something my brain is doing as a defense mechanism to keep me safe from that real or perceived threat (of stress). I think all of the factors that you mention play a role! I used to have an impeccable memory – not anymore. It is so frustrating.
I will ask around and see what others have to say. I know many others have talked about this on the Facebook Page. Thank you for bringing it up here. It’s definitely something I will post about in the future.
Hi Cathy! Here are some other responses I got from the Facebook Community re: memory issues-
– I thought it was just me! I had multiple PE and DVT in July 2012. For a solid year, words would simply escape me mid sentence. I also found that I would forget to include words when writing. Very frustrating. It has, however, gotten better over time.
– I have to say I was just talking about this. I had a grandmaul seizure Xmas day. Is it meds or something else. I wish this writer would contact me cuz u feel so weird like it’s only happening to u . : (
– I had the same thing. Very “foggy” memory and had to stop mid sentence as well bc my mind would just go blank. Do not know what caused it. But I think I read somewhere that having a PE can cause it. I still have lots of side effects [diagnosed after an ER visit 2.5mo ago]
– Yes, this happens to me, I just stop mid sentence or get asked a simple question and have to think f the answer. At the end of the day sometimes my words come out messed up and slurred. That is when my teachers tell me to go home. For me it gets worse as the day goes on.
– Thank you a bazillion million! I just said to my sister this afternoon that sometimes in addition to words not coming to me – I a actually slur words (especially when they start with the same consonant sound). I so appreciate this post and comments. I keep thinking stroke but I had a CT scan of my head and it was okay.
– (I added) I went to a neurologist after my PE because I could not remember things or articulate speech. I also did not respond to stress normally. Thru did not find anything additionally wrong. You guys are definitely not alone!
– Extra stress can cause brain fog. You may be in fight or fllght mode chemically most of the time. That alone could fog your brain but if you already had stress from dehydration, toxins in food and body/home products, medications, artificial sweetners, sugar and gluten or had nutrient deficiencies, the new challenge could have put you over the edge. It can be cured by cleaning up your diet and toxin exposure and gentle exercise. Read the book Grain Brain. You don’t need more drugs.
– Yes! I had tPA and lovenox Coumadin! I couldn’t remember at times how to get to my Dr’s office had to call the wife! I still struggle with forgetfulness!
Hope these can help!
Wow, Sara, Thank you! Yes, these are very helpful. It does sound like brain fog is a common issue in PE recovery. I appreciate the suggestions on lowering stress through better nutrition. The idea that my body may be in flight/fight mode is a very interesting one. I know what an adrenalin rush feels like when I confronted a burglar years ago (not intentionally, I assure you). It just shuts down the upper thinking part of the brain so you can act instinctively and quickly. One of the hardest things I’ve ever had to do is dial 0 on the phone (way back with rotary phones!).
But besides the stress, I do think something else is going on here akin to what people experience in recovery from stroke. I’m going to see if I can find any research on this. I am thinking and speaking better now so hope it will continue to improve. I remember a friend telling me it took 18 months after her car accident and concussion to feel like her brain was back to normal.
Many thanks to all of you! Thank you, Sara.
You are welcome, Cathy and yes – interesting correlation with what you experienced during the burglary! Thanks for sharing that. WOW – I am glad you are okay! I am reading/learning more about nutrition too. Let us know what research you find. It might be helpful to share in a post for others to access down the line. I do want to write more about this. You sound well. Hope you have a great day today! 😀
Hi everyone,
It’s been a bad few weeks for me when I thought I was getting better. Last week I spent most of the time feeling a lot of pressure in my chest and what I call a fluky feeling, plus an occasional rapid heartbeat. I almost passed out in the shower. This week that weird feeling in my chest passed, but I woke up one morning with a pain behind my shoulder blade every time I took a deep breath. I think I slept wrong…and hoping it’s not actually my lung causing the pain – I still have it, Thursday I was officially terminated from the job I had for 16 yrs. I’m still on disability for my back issues that can’t be addressed with injections and surgery until after I’m off the blood thinners. So short term disability ended this week. Today is 3 months post acute PEs event altho they consider me only 2 months into the healing process because I was at such sub-therapeutic levels for the entire first month, and the severe anemia worked against healing too. I’m amazed that people are so active by this time. Since walking is too painful for my back I am trying to do the elliptical. But I can really only do 5-6 minutes at a time several times a day. I worry, like John, that my enlarged heart can only take so much. And the doctors only say to do what I feel I can. I don’t know if that means I should push myself more, if the dizziness and feeling like fainting is normal or if it’s signaling a problem. My primary says I’m stable on xarelto. So why am I feeling like this? And why such intense leg pains at times too? Does anyone still get these feelings after all this time? Thx!
Hi Carole. I am sorry to hear you are feeling this way, and also sorry to hear you were terminated by your employer. I have so many things to say!
Firs, yes, yes, I can relate to how you felt at 3 months out! I was the same way. I was also anemic, and I have had a very difficult recovery. I would say it took me 6 months to feel somewhat normal and a year to feel anything like my ‘old’ self again. EVERYTHING was still painful at 3 months. I could not walk very far, was tired all the time, did not have an appetite, had leg pain and struggled to breathe. I was on oxygen for the entire first month of my recovery. I lost my job 4 months into my recovery accuse I was not doing well and began the long decent into disability, unemployment, all while still looking for a job (which has been a 16-month search). My heart breaks for you because I know exactly what you are going through!! I was there too.
Now, almost two years out, I feel significantly better and almost ready to try returning to an active lifestyle. I do know recovery is different for everyone and deepening on the severity of what happened, it may take some people like you and I (and others) a very long time to even begin healing.
If you still have what you think might be lung pain, maybe at least call your doctor to advise him/her, just in case. I would hate to see you go through anymore of this. I would think dizziness and feeling faint is a sign of something going on with oxygen or blood pressure (but I am not a doctor) so I would think don’t keep pushing yourself, but rest when you feel that way. I could not do any walking for fitness for nearly 6 months! It took everything out of me. If you keep feeling that way, I know it’s not what anyone wants to do, but ask your doctor because that would worry me.
I just want you to know I am thinking about you and wishing you well and hoping you can start to feel some relief in the next few days, weeks or months. You are not alone, Carol feeling this way – truly! Let us know how it goes. Have a nice Sunday. Talk to you soon!
Hi Sara,
Thanks for your comments. It’s a comfort to know someone understands and has gone thru similar situations. It was a few tough weeks emotionally but I’m finally accepting what has happened as far as where I stand at this point in my life and losing my job. Now it’s just a matter of fighting for long term disability. And making a plan for my future. And healing!
I appreciate your thoughts about talking to my doctor. I had already had an appt with my hematologist today. Unfortunately, once the drs see my cane (necessary for my back pain) they think my healing progress is stymied by the back and tend to brush off the concerns I have about my breathing limitations by saying I’m out of condition because of my back. I agree but seriously doubt that will cause me to faint! So she suggested I see the cardiologist about the dizziness and fainting spells – possibly because of the heart damage from the original emboli. I’ve also noticed some wheezing so, she thinks a visit to my pulmonologist should be on my list. Since no results were found for my clots or severe anemia, she wants tmy gastroenterologist to aggressively look for a cause. Unfortunately my chances of another clot (or multiple) goes up another 25% within the next 3 yrs because there’s no reason for it. So that’s a bit disconcerting.
So that’s where I stand at the moment…with a roster of drs to see and still no resolution for anything. Altho the one bright spot is the iron transfusions have finally started working and I’m off infusions for a bit! I hope you are doing well and I thank you again for your comments, encouragement and help.
You’re so welcome, Carole! I hope you have a good week and continue doing what you need to do to take care of yourself – I think a few of us will be interested to see about the follow-up from the cardiologist. I hope you can either find answers or get an explanation. I am glad you are here to connect with us. I understand how you feel. You’re not alone! 😉
Hello guys:
So I saw an internist on Wednesday morning. He sat with me for close to an hour and showed my ct scan to me, revealing only three small clots, and he said that a right ventricular enlargement is caused by these. He was patient but I still feel as though I don’t have the whole story. He’s convinced that my heart will return to normal or near-normal conditions, and basically passed me off to return for a follow up in late may early June and remain on warfarin until then. Does all of this sound right? I booked myself an echocardiogram April 1st just because I want to see what’s going on with my heart, eben though sometimes I question the merits of having information because I feel like I have no one to go to with it. I am getting a new family physician on April 1 as mine is moving away and I hope that he will be more willing to listen to what I have to say, and look into my concerns.
John
Hi John,
Sounds like what I’ve been told. I had my PEs in December and I was told my lungs were “loaded” with clots and I’m lucky to be alive. I had/have many clots in my leg and my doctor told me as each broke off it also sent showers of more clots directly up to my lungs. My heart is enlarged and I even had/have a small clot in my heart. My internist, hematologist and cardiologist have all said they will not perform another ECHO or even scan my legs and lungs until 6 months later (June) because it will only still show the damage and clots. They, and my pulmonologist also said it will take that long for my body to clear up and heal. But they have also warned it might not all clear up and my heart might not go back to normal so I will have a “new normal”. But only time will tell. They said to repeat the tests any earlier than 6 months would be an “epic failure” because it wouldn’t be enough time for healing and would only show what they saw already 3 months ago. I know it’s hard, and scary, but you really have to wait it out a bit. I think you will only get more upset to see things still as they were because you haven’t given your body time to heal yet. Hang in there. And try to not worry so much. Trust your body to do what it has to with the medication it’s been given. It’ll get better. Good luck!
John, I’m an engineer not a medical person and so I look to see if this seems logical to me. It doesn’t but that could be I just don’t have all the information or all the understanding of the mechanisms going on here. I do not understand how three small emboli could create the blockage of the blood flow that would put the heart under the strain that would cause the enlargement. Still seems more logical to me that the emboli are clots that formed in the enlarged heart and then broke lose to go to the lungs. If you haven’t had a Venous Doppler than you have no proof that the clots came from your legs. They could do that easily at the same time as the Echocardiogram. There are a number of conditions that can cause an enlarged heart – cardiomegaly. The primary two are high blood pressure and coronary artery disease. It can also be an inherited condition.
On the echocardiogram, please make sure they get good pictures of the RIGHT side of the heart and get a good enough picture to make an estimate of the right ventricle systolic pressure. So many of the echocardiograms are focused on the left side of the heart that the technician may not think to get a good picture of the right side. That happened to me with the echocardiogram they did in November so it was useless from my point of view since it didn’t answer the key question I had: Was the heart going back to normal and the dilation decreasing? They need to measure the thickness of the muscle wall of the ventricles as well.
The gold standard for seeing what is going on in the heart is heart catherization. Because of the poor echo, I did have the heart catherization — a combined one where they went into both sides of the heart. Again, the nurses had only prepared for the left side because that is by far the most common situation. They did catch that before they started. With the echocardiogram they can only estimate the RVSP, with the catherization they can actually measure it. And, they can check out all the coronary arteries. The doctor moved the displays so I could watch as they did the procedure and talked to me about what they were doing since I had chosen not to have any sedation. For me, it was fabulous to know the coronary arteries were fine and that the dilation had come down although more time was needed for it to get back to normal.
I’d keep looking for a doctor you have confidence in. It does feel like doctors are dismissing things too quickly although I was impressed your internist took an hour with you to explain the CT Scan.
One really has to be one’s own advocate these days. Glad you have the determination to keep going until you get the answers you need. Hang in there!
Thank you both. I’ve tried to be my own advocate but doctors in this busy town are well trained in getting patients out as fast as possible. Even in Edmonton I couldn’t believe my treatment. And I have looked deep into the issues I have and my conclusion is similar. I can’t see small clots causing problems. The echo result states no evidence of chronic thromboemboletic pulmonary hypertension. But still an extempore enlargement of the right ventricle. Otherwise function looks satisfactory.
I can’t imagine why they would not look further into this situation in a 31 year old who is otherwise the picture of perfect health. I do believe my heart isn’t working well and causing problems but have not been able to convince anyone to even consider the possibility.
John, I had a thought. Why don’t you go to a doctor specializing in sports medicine? At least they might have more interest in a young, athletic person who is living a very healthy life style. And, they might work with a cardiologist that they trust and also is interested in the athlete as a patient. One of the things I like about this website is the number of health conscious people on it. It is an inspiration to me.
I completely agree with you in trying to get patients in and out as possible! And I agree that sometimes it is to the detriment of someone’s health. Do they know if the clots passed through your heart? From what I am told, no matter the size, it can still cause damage. I am not sure on the extent though, that seems to be the question we all have. I am hoping you share what you find with us too! Thank you for sharing what you have. I will let you know if I find anything out (i.e. does a clot have to be large to cause these types of problems or is something else causing them?).
Hi John. As you know, I am not a doctor either, but this sounds right to me from what I know. I have always been told the heart will do what it can to repair itself. Do they know why you clotted to begin with? That may help determine how long you stay on warfarin too. I am glad you are taking your medical matters into your own hands and seeing out the help that you need – so many people do not do that! Keep us updated, wishing you well as you recover.
The clots may have caused the damage as they passed through from what I understand, but there are others here who know more about the heart’s direct involvement in this than I do. I just had been told similar things about my heart and it’s ability to heal from the clots passing through. Hoping you can find answers.
Hello – It has been 8 weeks since my diagnosis of PE in right lung after 5 months of feeling unwell and exhausted and being treated for lung infections! Although it was very scary I was relieved to have a diagnosis – I thought I was imagining my illness!! We still do not know why this happened but thoughts are turning towards spinal degeneration – I am seeing the spinal surgeon who performed my L4/5 fusion in 2005. I am hoping this is not the case although I have been suffering with extreme hip and neck pain for a few years but have taken the painkillers when needed and got on with it!! I originally was put on rivoroxaban but after 3 weeks was really unwell suffering from violent migraines and coughing up a lot of blood. I was changed onto warfarin and it all seems to have settled down – except the extreme exhaustion and dizziness and neck and back pain. Bizarrely for the past year I have also suffered extreme pain in my hands and wrists when I knock them. The pain does not match the knock – it is only a light tap or scrape and it makes my eyes water!! It’s probably not connected but this is one of the reasons my lung consultant has referred me to the spinal surgeon. I have been back at work part time for 3 weeks but am struggling. My memory is poor and my emotions are all over the place but I am determined to keep going. I need to get back to normal….. Although I know it will take time and I am being cautious. My boss is fantastic and is being really supportive. Today was a bad day and I tried to keep going with the chores but ended up in bed with the shivers! I have had 2 good days this week which is progress. I don’t think my PE was as serious as some of you guys – but it’s good to be able to read about your experience and be reassured that how I’m feeling is a normal recovery – slow and frustrating! I keep telling myself there are people worse off than me 🙂 good luck to you all and say a prayer for me for Tuesday – I’m hoping it’s not my spine!! Xx
Hi Nicola and welcome to this community! I am so glad you are here after struggling with a PE for so many months! Are they checking you for clotting disorders as well? If possible, you may think about requesting to that to rule out or find more answers. I will definitely be praying for you this coming Tuesday and if you feel like it, please let us know what they say. I hope it is not your spine as that is a frightening perspective. Many thoughts being sent your way.
I don’t think there is such a thing as a PE being worse for one or another – I think it is horrible that ANY of us have to go through this and I think no matter how “bad” the PE actually is or seems, we all handle things differently. So, someone who is going through the same type of injury that I did may handle it worse or better than I did because we are coming from a different place in many instances. You being here to share your story makes a difference because I do believe you can touch someone who may be going through something similar and let them know they are not alone. Thank you for sharing your story!
Oh my goodness! YES!!! The memory thing is such a real thing for me and something I’ve been struggling with a lot in the past 3 months since I was in the hospital. I forget words, lose my train of thought and feel spacey all the time. I also spent the entire 1st 2 months of recovery in tears over everything…good or bad. Thankfully that is subsiding a bit.
Nicola, I’m anxious to know how things go with your surgeon. So much of your story sounds like mine….altho my surgery for L5/S1 fusion was put on hold indefinitely because of almost dying from the many clots I have. I have severe degenerative disc disease and need surgery for stenosis in several areas also. I also have intense neck pain and have herniated all of my neck discs at once a while back. If you find your clotting was caused by spinal degeneration it is something I would definitely need to look into. So far there has been no cause for mine and I have zero risk factors. But my back “went out badly” 3 months before my clotting event and I now can’t walk or sit upright without intense pain. And altho my drs all say the clotting is not from the epidurals and other procedures I’ve had, I keep thinking about my back as a cause because it seems so conincidental that this has all occurred within 3 months time. Good luck! I hope you get some answers.
Hi
No answers yet but spinal surgeon did pin prick test and both hands up to elbow were numb and rib cage front and back on right side (T6-T10) . Got to have an MRI on Saturday and will get results on 8 April with surgeon appt. He was doubtful it was connected with my breathing/lung/ PE as it is very rare but they said that about me having a PE!! Will let you know the outcome – hope you’re ok .
Hi Nicola. I hope your surgery went well. Just wondering how you are and hoping you are healing! I hope you get some answers too.
Thank you all. I will have to wait at least until April 1 to see if there’s been any change in my heart situation (and the doc says that may not be enough time to show yet, if that makes sense? From what I gather, it shouldn’t take long for function or at least dilation to return to normal or get better if at all), because I can’t push any more doctors into looking into it anymore right now. I have been getting really dizzy in the afternoons and I get pains in the center / left chest, which weren’t even there on diagnosis. I’m at a therapeutic level inr on the warfarin, and I guess that’s about all I can do for now. I get concerned because the onset of weakness and dizziness / worse sob all came about after I was diagnosed and starting anticoagulant treatment. Doctors all call it typical/normal so not much it can do but wait. Hope all you people are having luck with your recoveries. I’ll be here in touch as much as I can.
John
I was diagnosed with a large blood clot in each lung when I was 8 weeks pregnant I have been injecting clexane twice a day since I found out last April. I found it a struggle injecting my tummy while pregnant and especially when my bump got big and she started kicking. My daughter is 11 weeks old and since I gave birth I have felt really unwell the breathlessness is back to even getting brethless while talking let alone making the stairs. Also really tired and chest pains are still real stabbers. Since I had my daughter I have had pins and needles in arms and legs along with a persistent headache. Since I was diagnosed with pe’s I have been slightly unsteady on my feet and two weeks ago I took a turn for the worst balance wise I fell into the tesco clothing and almost passed out twice. Now most days I can’t stand still without swaying because my balance is totally off. Then a week Wednesday I started having seizures in my sleep mark says it looks like I’m having a electric shock. I don’t know anything about them until mark says how you feeling and legs feel strange when I get up to walk. My doctor 4 months ago said I don’t know why your not feeling any better because you should be. Does anyone else still feel like crap and can’t do anything still because you get so breathless.
Sarah g here again after reading some of your stories it reminded me of a few things I missed out. Firstly mark my partner called a ambulance to get me to hospital the first time I had a job to make it to our down stairs loo. I got taken in and had blood tests done my heart rate was up I had a slight temperature and was clammy with a pain in my right shoulder. And had a job to breath was white as a sheet and on the blood tests it showed I had a hi d dimer at 1700 when it should have been around 350 they kept me in hospital for 4 days and then sent me home with asthma treatments I knew it was more than asthma but went home on the agreement they would see me next week. After 4 days at home I felt like I was dieing so mark called my GP who said I don’t come out to young people he wanted me to go to the surgery we were discussed with his attitude we don’t have a car and it ment going by bus so rang for an ambulance they got here in five minutes. I was concerned about the baby I was 8 weeks pregnant and couldn’t breath. They rushed me into hospital where I was told it’s a pe sarah and it’s life thettening mark had to stay at home and look after our 3 year old so I was on my own.next morning they took me for a ct scan and that afternoon a consultant came to tell me the results. You have two large blood clots one on each lung I was shocked to say the least he said we didn’t expect them to be so big it’s a good job you came back in. I was in for 4 days in total and sent home with my injections. All this has made me realise I should go with my instinks and if anyone knows there body I do. The newest thing I am putting up with is brain fog and not being able to pronounce words like the other day I was talking to mark and when I said weeds it came out wwwwweeeeds so annoying not being able to speak.
Hi Sarah. Thank you for sharing more of your story with all of us. It sounds frightening, like so many, which is why I am doing what I can to raise awareness and get help for people who have been through this.
I am also concerned, following up with what you explained previously that the slurred speech in this case may in fact my some sort of stroke episode, because it sounds more like slurred speech. Not to scare you, but please let your doctor know this is happening. I know it is scary to think about calling a doctor again and telling you that you may have to go to the hospital or receive more testing, but I think it is a good idea in this case. It sounds like you do know your body and you know something is just not right. I have not had slurred speech, but more like forgetfulness or inability to find a word I need. Or, I start a word and can’t figure out how to finish it.
We were just discussing small strokes the other day in a support group online (check out Facebook if you there, there is a link to BCRN’S Facebook Page on the front page of this blog or search Blood Clot Recovery Network on Facebook) and while I am not a medical doctor, this sounds like it could be a sign of one. Get it checked as soon as you can.
Thinking of you, Sarah. Take care and keep in touch!
Hi Sarah! Welcome and thank you for being here. I can relate to how you are feeling tired and breathless – I felt tired and breathless at times for about the first 6 months after my PE. I still feel that I battle extreme fatigue from time to time nearly two years out. My breathlessness now comes from being so far out of physical shape, I think.
I am so glad you and your little one are here and you are able to share your story. Have you been in contact with your doctor about the seizures and continuing chest pains. pins/needles, headaches and swaying/dizziness? Those symptoms are a little concerning to me that something else may be going on or is not resolved yet. I can tell you in my experience, things of this severity did not happen to me during my recovery. I had lung pain (which could be called chest pain too), but it started to decrease as time went on. If you have not let your doctor know it is still going on, please do as I am concerned. If not, did he/she offer any other solution other than you should be feeling better? You may need to unfortunately push them for answers.
I hope you have a peaceful day and let us know how you are! Again welcome, we are glad you are here.
I have been reading about other people’s experiences of there pe’s this evening I have a 16 year old and 13 year old. And three year old son and a 11 week baby girl. I have found life a struggle since my pe and l feel my life is on hold I just take one day at a time that’s the only way I cope. Mark has given up work to help with the kids and he does all the house work he’s been brilliant and so under standing. We have known each other since I were 5 years old and no one knows me better than him. He knows if I’m in pain he says my face says it all I can wash up in the morning some days by the time I have finnished I look warn out. It’s so frustrating not being able to do anything else I feel so useless most days sitting there while he does everything. Now the balance has become a huge issue because some days I can’t stand still where I’m swaying I feel to unsteady to hold my baby while standing. I was told when you have your baby you should find it easier to breath and start to feel better. This Friday I have the first appointment with my lungs specialist since the birth of my baby. Then next Wednesday an appointment with the blood specialist to find out if he has made me an appointment with the neroligist and the blood clot specialists. I’m starting to wonder if my recovery is being prolonged due to my body going through pregnancy as well as the pe at the same time.
Hi Sarah. That very well could be – your body has no doubt been through a lot of stress with both! I think a neurology appointment would be very helpful. I had one early on in my recovery (because of the speech and lack of concentration issues) and while they could not find anything very specifically wrong, it was helpful to rule other things out. Make sure you mention everything you have here to your upcoming appointments for sure!
I assure you, you are not worthless and it sounds like Mark knows that too. I am glad you have him to be so supportive. It is very common to feel worthless after something like this. There are a few other ladies here who have experienced similar feelings when dealing with caring for children, families and a household. You are not worthless, you are going through something very difficult that is going to take some time to work through. It may be that they still haven’t figured out all that is going on with your body and you are still needing to find that out so you can treat and then heal. I think, emotionally, you may start to feel better when you have some answers from the specialists. It does sound like you need them, as the symptoms you describe sound (to me) severe given what I experienced during my own recovery. Hopefully some others can weigh in.
Thinking of you today and wishing you comfort. Take care!
Hi Sara. I have told my blood specialist everything even the trouble speaking but not about the slurred speach as that happened after I rang to say about the seizures. I know seizures can lead to other things my sister suffers from them and my auntie. I told the doc about the seizures, speach, pain in left shoulder, balance got worse, pins and needles in both legs and in left arm, constant headache last time I spoke to him and that’s when he said he would get a emergency appointment with the neroligist that was two weeks ago tomorrow have not heard anything. I have thought stroke but that word scares me but I will explain everything to my lung specialist on Friday I haven’t seen her since 21 st Jan I think she thinks I’m going to be better.
Hi Sarah
A lot of what you have said has sounded similar to me,., Could ask where you get your headaches because I don’t get the normal headaches across my forehead but sharp pains that go across my left temple into my eye and the left side of my head. Also you saying that you had pains in your shoulder has made me think about the fact that I kept getting pains under my left shoulder blade before I knew about my clots which I kept putting down to a pulled muscle. I was getting to the point where I thought it was not normal for a muscle to be pulled for about 6 months so I am now wondering if it was something to do with my PE’s
My headaches are also sharp pains that penetrant through my left eye they are so painful I hold my left side of my head and my eye waters. When I get a stabbing chest pain it continues down my shoulder. I had these chest pains when I was first diagnosed with pe’s and 2 weeks they have returned with avengence.
I would think your shoulder pain was the first signs of your pe. I was breathless had a temperature and was wobbly on my feet.
I think after reading your stories I feel not alone anymore there are people that understand and I’m not giving up without a fight l know that one day I will have some sort of life back ware I can play fight with the kids and not get breathless and sing and dance again and wash my hair without getting breathless. I look forward to that day I think we all need a goal to hold on to. I have suffered since I was 16 with fibromyalgia due to a horse kicking me in the back and twisting my pelvis and damaging a disc. I also have a under active thyroid gland. I’m 39 years old and now dealing with the recovery of the pe and now having night time seizures I feel a bit of a train reck at the moment. Had a mri brain scan 3 weeks ago because I am still so unwell doctor wondered if I could have a clot on the brain because you come off thinners while in labour and I was off it for 2 and half days but scan was clear. I wish everyone all the best and keep your chins up where there’s a will there’s a way I always tell myself that.
You are right, Sarah! We will all get through this. Thank you for saying that and for being a part of this community. I just wanted to mention you are also not alone in your thyroid and fibromyalgia issues (I have thyroid issues myself!).
Your positivity shines through and is important to recovery. I am hoping you get some medical answers soon so you can continue to recovery the best way possible. Thinking of you!
Hi Sara thanks for your reply. Are most of you frome the states because I live in the UK. And I must say your doctors sound better than ours here they don’t say much and seem to drag there feet. When I was diagnosed with pe’s I was told they will take up to 6 months to break up and that was it.
Hi again sarah sorry to keep on my memory is bad at the moment wanted to ask for some advice. Yesterday morning while I was in bed I scratched the back of my thigh and felt a small lump on further inspection there’s a bruise on top of the lump and a few strange dots trailing from it I have had almost constant cramp in that leg for a few days. And this morning a bad pain as well in the side of the back of the knee. Mark is worried what if it’s a dvt and thinks I should show the doctor Friday. But I don’t want to look stupid if it’s just a bruise but I can’t recall knocking myself and it’s right on the back of the thigh. I didn’t think you could get anymore clots for while on clexane I inject 70 mg twice a day I have been put on this high dose because they are concerned.
Sarah g, Those dots coming from the bruise could indicate a very serious bacterial infection. You do not want it to spread. You should get it checked out IMMEDIATELY! Let us know what you find out.
Sarah g
I just wanted to let you know I’m in the UK too and know how you are feeling with UK doctors
The bruise is just a bruise I had it looked at.one less thing to worry about.
Sarah, I’m from the States and I feel similar frustrations with the health care system here. While PE is a notoriously missed diagnosis, the lack of communication between providers (the doctors) and problems with procedures did jeopardize my life those first 24 hours in the hospital with my massive PE. I’m still working on a case study to present to the hospital on this. And, also seeing the doctors afterward where you just don’t get any relevant information because they are specialists and do not see the whole picture of your medical problems especially in the 15 minute time frame they spend with you. I recommend the books: “Safe patients; smart hospitals” by Dr. Pronovost and “The Checklist Manifesto” by Dr. Gawande whose programs can make a huge difference in terms of saving lives and in having faster recovery. Not sure what to do about the specialist problem. Doctors have to specialize now because of all the medical knowledge that’s available now but we lose the integrated picture of what is going on because all the body’s systems are interrelated. Some hospitals like John Hopkins have a multi-disciplinary approach that seems much better. We need to fix this in both countries.
Thanks for your reply I’m seeing my respiratory doc tomorrow I’m going to ask more questions than I normally do. I want to find out if I have had a mini stroke I’m starting to think Sara maybe right I noticed something this morning certain things I usually do with my left hand I’m having trouble doing. And when I’m cooking I’m picking up things I don’t need but I don’t know why I picked it up. I stand looking confused. And still having trouble with my speach can’t get some words to come out sometimes.
Sarah, What you say about your symptoms does worry me especially since you have two things going on that could be quite serious. I guess it is already evening in the UK. If I were you, I’d consider going to the emergency room tonight. Or, if you have a neurologist or primary care doctor to call them now! I’m not a doctor and don’t know about TIA’s and strokes but I do know if you are having a stroke the longer you wait the more damage your brain may be experiencing and time to treatment is critical in terms of ability to recover.
Hi Cathy. I will do had not even thought of anything like that.I will let you know what doctor says.
Hi Cathy. I am seeing the respiratory doc in the morning. I have no money to get there until then it’s 30 minutes drive and we don’t have a car. So I will wait until then and then explain everything to her. I have had a really bad day the headache from hell and most horrendous chest pain on left side and shoulder felt like I was buying up this afternoon and face was completely red and then my cough started again I’m sure it’s due to lack of oxygen because I got quite breathless and was only sat talking to my daughter.
Thanks for your concern it means a lot 🙂
Sarah, I can understand the dilemma of not having money or car and needing medical help. Is there any way you could call the respiratory doctor tonight? Or call the nearest hospital and at least talk with them about what you are experiencing. You need care and need it now. Is Mark going to go to the doctor with you? I hope you have someone with you especially as you travel. Do you a friend that could take you so that you don’t have to take the bus?
Hang in there! We’re here for you. Please let us know what you find out tomorrow.
Cathy I saw my respiratory specialist told her all that’s going on with me and she popped into the room. Next door to speak to her boss came back and said we both agree your going to hospital. I replied and how do I get there she got hospital transport. That was Friday and I’m still here the only thing they have found so far is a raised blood count to do with clotting which the doctor has said if it’s still raised is the answer to why you got your pe. I’m. Having a chest ct scan tomorrow to see if the pe has changed at all and I’m having a mri done but a different one to last time. This one will show if I have had a minor stroke. The way my luck goes they probably won’t show anything. The doctor all agree my balance is pretty bad and agree I need to see the neroligist.
Sarah, It is wonderful to hear from you and that you are getting the care you need! I did think the respiratory doctor was going to get you right to the hospital! Since we didn’t hear from you for a couple of day I surmised that must be the reason. I’m glad they will do the head CT Scan tomorrow. And, remember that ruling out things is also progress of sorts to getting to a diagnosis. I know it is much better to have a very clear diagnosis and know exactly what is wrong, but sometimes it can be more complicated or elusive than that. Glad the bruise is OK – one less thing to worry about. I also hope you can get some rest in the hospital. I’m quite sure you need that as well. Take care of yourself and keep us posted! We are thinking of you and very much care that things will go well for you. Cathy
Here we can’t call respiratory doctors it not like that you have to go to your nearest hospital and they speak to who ever is on call.
Thanks Cathy I am resting as much as I can and the consultant seems to be more helpful this time and has called me that 1 per cent I’ll person that has them stuck for answers. He said I totally agree the symptoms are there and so far have whitnessed 4 seizures in my sleep. I agree with you elimonation is progress but I would like the puzzle to start to click into place. I stood up just now and fell back on the bed and then continued to the loo where I almost fell over its getting worse soon I will not be able to walk at all it not funny little wobbles it’s more like run with it to keep myself up right and not hitting the deck. I will keep you posted looks like home tomorrow if tests are clear.
Hi Cathy Saw the neroligist today he said there’s no stroke and nothing nerologicly going on with my body everything is fine. And when I asked about the speach problems and loss of balance he replied with some times our minds think things are going on because we are stressed. And offered me a siciatrist to speak to about things at home. Another word it’s all in my head I’m so angry right now. He said some times we see people and have unexplained reasons for people feeling like this. Have to stay here until tomorrow and speak to my respiratory doc who sent me here who has my pe scan results.
Sarah, I can understand your anger! While I am sure you are under tremendous stress with all this, that doesn’t mean it is all in your head! Knowing what I’m going through, I really don’t know how a mother with a newborn and three more children can cope while trying to recover from PE! One thing to consider here is that stress can cause a chemical imbalance in the brain. A psychiatrist knows how to give you the right prescription to bring the brain chemistry back into balance. Stress does have a huge impact on your body physically. This could possibly get rid of the symptoms you’re experiencing and hopefully make it easier to cope with all that is going on. It should be a temporary adjustment until you are less stressed and the brain can naturally get back in balance. I have no idea what the impact of this would be along with the PE recovery, but your respiratory doctor should be able to help you with that. On the other hand, from my limited experience, I do find myself getting light-headed and feeling queasy when I bend over and my head changes position. That is probably a blood pressure change when I change position or possibly low oxygen. That would point back to lung damage. If you trust your respiratory doctor, I would listen to her advice on this. This is not about getting therapy for imaginary problems; this is about coping with real problems! I truly hate drugs of any kind but there are times when used correctly and for short periods they can be of tremendous help. What I hate is the abuse of drugs and doctors that are just legal drug pushers. I hate it that most drugs especially the psychiatric ones have very bad side effects and can reduce the quality of one’s life — like causing dizziness (you don’t need that!) or drowsiness. I do hope there are some ways for you to reduce stress — nutrition, getting enough sleep, quiet time and calming activities, having your family take on more responsibilities for meals, the house, taking care of each other. If there a visiting nurse organization that might help? Are you still on oxygen? Does it help? Please let me know what your respiratory doctor has to say. Share your concerns as openly as you can with her on all this. She might understand better than most other doctors what recovery from PE really entails. All this isn’t easy. I will be thinking of you a lot these next few days! I want all the best for you especially good health! Cathy
Hey folks.
Hey Sarah, you better go see a doc. I wouldn’t mess around with those conditions! Just for peace of mind!
I have still not been able to come to any conclusions about my condition. I can’t see it as anxious hypochondria… I’m pretty chill. The only time I get worked up is when I start feeling like crap. Which is generally in the afternoon every day. If my right ventricle wasn’t severely enlarged I’d chalk it up to simply recovery. I can’t get a healthcare provider to even consider anything else though. I’ve been thinking of driving to Edmonton once again to try a walk in there or something. I’ve got a treadmill test and I booked a consult with my internal medicine specialist late next week, and a (some say premature) echocardiogram booked for April 1… Amy suggestions? I still feel like I’m being taken too lightly by “professionals” out here in the wild northwest, probably because I’m a fit 31 year old who looks about 25.
Well here I am waiting for transport to take me home ct results show blood clots nearly gone but staying on clexane until I see the haematologist tomorrow and see what treatment and for how long. Have a appointment being made for a echo and a six minute walk with doctor and breath test. They took the canula out of my arm and where it was in the middle of my arm where bloods are taken the seizures have bent the needle and the butterfly clip parts have rubbed against my skin and caused 2 blisters. Don’t feel better health wise but do in knowing the body has almost broken them up x
Hi john I feel like crap today and the chest pains today are real stabbers I will see my lung doctor Friday she’s pretty good my GP is not worth a toss so I don’t bother with her. If I had a car I would go else where just to get answer every appointment I have I have to bus and if you look like crap as I do at the moment people stare at you on the bus.
Hello all I had my Multible PE,s in December and I have now been diagnosed with and orthostic Tremor which maybe caused by the clots ,
The follow up has been poor and not much advice either felt very alone and this is the UK but thankyou on here but I was 70 on the 1st of March and these PE,s have knocked me back see the doctor who saw me in hospital on the 1st of April first time since coming out of hospital and I shall tell him I thought that was to long keep posting keep well love carol
Hi Carol
I’m in the UK too and I was diagnosed on the 7th November 13 and I didn’t have my first appointment at the hospital after being discharged until the 18th March. I know how you feel about having to wait so long before seeing a PE consultant. When you are sent home with no advice and you feel that ill its not funny to be left that long to cope on your own before seeing the specialist. Thankfully the consultant was very helpful for me and told me not to expect to feel better for about another 2-3 months. It will also be about that long before I can return to work but the way I am still feeling I don’t know how I will make it . I still have to have another v/q lung scan and heart scan because of the pains in both the front and back of my chest also a brain scan for the pains in my head. The breathlessness and exhaustion is the worst thing I have ever experienced. After my last hospital appointment by the time I had walked across the car park I felt physically sick with exhaustion. I hope everything goes ok for your appointment
Thanks for this Sara! Your story sounds almost exactly like mine. Drs telling me they can’t believe I’m alive, trying to wrap my head around what in the heck happened at my age(27 at the time), unable to leave the house, constant anxiety, etc. And now, it’s been a little over 18 months since my PE. I’ve definitely improved, but I’m still not like I was before. I still get days where I have chest pain, fatigue, and shortness of breath. And the anxiety still seems to overcome me frequently. But while recovery might take a very long time for many, the important thing is that we survived! It’s so important to go at your own pace, and not to be hard on yourself while your body is in major healing mode. This is such an awful thing to experience, and everyone that does is a warrior. Thanks for this post….it’s good to see that we are not alone, and that it does in fact take a very long time to recover from this. Good luck with your journey of healing! 🙂
Thank you for being here, Erin and for your kind words! While I wish none of us had to go through this, it is comforting to relate to someone who shares a similar story. We sound like we are about the same amount of time out and in similar places with recovery and how we are feeling as well.
Your message of recovering at our own pace, one day at a time and patience as we heal is very important. I will share it with others. Thank you so much. Wishing you well as you continue to heal too! 🙂
Hello all. Hope you’re well!
Last night I went into the er (for the third time in 3 days) and I had a wicked chest pressure and pain, and felt like I was filled right up from my tummy to the back of my throat. I was in agony and shaking for hours. So they did EKG, blood, chest xray… Gave me an Ativan, 2 painkillers, and sent me home! Never even said what they thought was causing all the pain.
I passed out at the hospital for at least 3 hours after taking the medicine, and woke up to them saying : you’re good to go! Lol, I dunno what’s up, but I’ve had a few panic attacks in my life, just like most of you here I’ll assume, and that sure didn’t feel like panic. I worry that they are overlooking something, (there again, that’s the nature of anxiety, right?) and that I’m getting misdiagnosed, but the wait for weeks on end to see a specialist is absolutely unbearable, especially when I feel like each day can be worse than the last.
Anyway, I hope there are answers next week here, and that things are more smooth in the meantime. Thanks for listening to me vent.
Johnny
John, That sounds awful that they gave you no explanation and just sent you home! My advice is to go get the medical records from your visit — ALL of them — Patient notes, Doctor’s notes, Doctor’s orders, ECG report, lab reports, MAR (Medication Administration Record). I recommend EVERYONE do so. They should have put what they decided was going on in the report. The first time I asked for my medical record they gave me just what was “legally” required which did not include the Patient notes (nurses notes) for instance. The doctor’s notes did not even have mention of my seizure-like episode so I actually bought the patient notes for $156.50 and found that my blood pressure had gone to 80/18! It was cardiogenic/obstructive shock which they mis-diagnosed as hypovolemic shock from “mild” dehydration. (Giving me lots of fluids which you do for hypovolemic shock could have killed me and is NOT what you do for cardiogenic shock!) This is what started my case study and how I found that the lack of communications, under-assessment, and poor procedures had jeopardized my life.
John, there are on-line services that will analyze your ECG. You could even buy one of the heart monitoring devices which includes the service. If you feel something is going on you can send the data in for immediate analysis. Have you had a Holter monitor test which records your heart for 24 hours (or sometimes I think they do it for 30 days)? That showed me I was having 12,000 PVC’s (skipped beats) per day! I also taught myself how to read the ECG’s especially the signs of PE from some excellent Youtube videos and websites. lifeinthefastlane.com and ekgacademy.com are fabulous. Here is the page on the ekg in pulmonary embolism.
http://lifeinthefastlane.com/ecg-library/pe/
Hang in there and keep advocating for yourself! Cathy
Ooops. That’s ECGAcademy.com I keep wanting to say EKG rather than ECG which seems to be preferred now in English speaking countries.
I haven’t looked into that stuff at all. I hope that my stress test/ internist follow up / 6 week echo will tell me exactly what I need to know! I do not trust doctors, and feel like because I’m young and muscular, they don’t take me serious. I have had a 24 hour holter test and my internist says there is a few rhythm disturbances but nothing that looks out of the ordinary range… I also don’t trust any doctors ability to read those silly ecg read outs. I’m probably just a paranoid mess, but I always tight recovery meant getting better, not worse! Haha. Have a good day ok?
Hi John, Just one more thought and I’ll let you get on with your day. Yes, I’m having a very nice day — quiet, misty rain, spring in the air, bird songs that sound so optimistic about a beautiful mate.
It might be good not to set your expectations too high that the echocardiogram will give you the answers you are looking for. The echocardiogram did not give me the answers I needed (they didn’t focus on the right side of the heart for one thing…). The gold standard for heart diagnosis is the heart catherization. I was so glad to go through that procedure because it showed all my coronary arteries were looking very good. You can’t believe how much of a relief that felt like since there is a lot of heart disease in my family history. But, hopefully, you will get the answers you need. My experience with the cardiologist and most of the other doctors is they are treating the “typical” patient because they aren’t listening and don’t have time and perhaps are bored with seeing the same things day after day. I’m very tired of being the “typical” patient because there is no such thing as a typical patient. We are all unique and special and should be treated that way! Yes, I would think a healthy, muscular young man could be dismissed too easily. But, I was too because I was calm and in no pain even though I was actually close to dying. I was appalled by the cardiologist who decided I must have sleep apnea — the disease de jour these days. I challenged his conclusion on my echocardiogram and he did NOT like that. Since they couldn’t get anything from the right side pictures, he just quoted the previous echo which was the one they did in the ICU under the full clot burden. The whole point of doing the echo was to find out how much the heart had improved since that echo! I told him his conclusions were invalid and that’s when he said let’s order the heart catherization. And, in the end, all I needed was some bananas to get my potassium back in line! (Hypokalemia).
I do think there are some great doctors out there (the ICU doctor who saved my life is one) but they are not “typical” LOL! Have a good day, too, OK? Cathy
Well, I’ll be sure to see what the results look like from the stress test and the echo. My diagnosis from the last echo showed the enlargement. Hopefully the new one will show an improvement of some sort. If everything is inconclusive, I’ll ask about a catheter. My blood tests (Troponin I) and such seek to be ok too. Thanks again.
Thanks for keeping us updated, John! I know it is horribly frustrating to be young, otherwise healthy and facing a condition or illness that no one can even explain to you because they can’t seem to figure it out themselves. Hoping you find answers!
I am a survivor of a large dvt which ran from my ankle to my hip. Six months after my initial warfarin therapy and two months after coming off, I had a reoccurrence and am now on warfarin for life. We found out, only after my oldest son and my second out of four children suffered pe’s , that we have a rare genetic condition. It has been almost three and a half years for me and I still ride the INR roller coaster. I still worry about little aches and pains, especially if they’re in my legs. I try and support my children more than anything. They were 23 and 29 when they suffered the pe’s. No one ever really told us how long we would feel less than healthy or how tired we would be. The fatigue has to be the worst! But each day is a better day!
Hi Donna! Thank you so much for sharing your story and your family’s story here. It really helps to hear that while all of this can be horrible, we are not alone and we can get through this little by little. I am glad your children are here to talk about it as well. I would agree that it seems no one explains the fatigue or how it will be. Take care and thank you for being here!
Found out today I have to stay on injections for life and that I have tested positive for lupus and will be retested in may for it. You have to have 2 positive results 3 months apart if it is lupus that’s what caused the clots. Going for a echo to see what Damage clots my have done to my heart doctor says I may never have my oxygen levels back to what they were.
Hey. Sorry to hear about your situation. I’m in a similar one, in terms of a potentially life threatening situation, and want you to know you’re not alone. Hopefully they can put you on a program that can improve your quality of life and make you feel ok.
I’m waiting for a stress test, and a second echocardiogram. It looks to me right now as though I may have a dilated cardiomyopathy, but it’s hard to say right now, so I can sympathize with you. Try to stay tough and I’m sure you’re welcome here, because clots are a part of lupus, and cardiomyopathy as well.
Thanks john I wish you all the best and hope you feel a bit better soon.
As I said to my doctor if it is lupus at least we know what we are dealing with and it gets rid of all the guessing what’s wrong and I can find the best way of dealing with it.
Hi Sarah
Sorry to hear about your diagnosis but although we all wish we weren’t suffering with these problems at least they have now given you a proper diagnosis. Hopefully now they will be able to start you on the right medication. I do feel sorry for you if you have to continue with the clexane coz it stings and the awful bruises that you get with it. I’m now waiting to go back for another v/q scan and heart & brain scans. I hope you start to feel better soon
Had my stress ecg done today. The doctor listened to me and he went over things well with me. He listened to my heart, monitored my stress progress up to a 100% heartrate of 187 bpm via ecg telemetry, o2 sat, blood pressure etc, and poked around my chest and abdomen.
I’m not a doctor, and not sure what he sees with all of this, but he said there is no evidence of enlargement at this time. I did 14.5 minutes on the treadmill, finishing at a run, and definitely very short of breath and shaky, but he said that was very well done. Right now, basically my symptoms are being attributed to PE recovery. It puts me at ease for the time being, and hopefully I hear more in the follow up echo. Thanks for listening everyone.
John M
Well done john I’m pleased for you that is good news onwards and upwards hey.
I look forward to the day when I can even think of trying to run I have a echo being booked soon and have to do a six minutes walking test and oxygen test.
Well, I’m not entirely familiar with lupus, but I hope that it’s a manageable condition and that most of your issues are reversible with time, and caused by clots. Keep us posted and heal well, ok?
Thanks john lupus is a auto amune diease it’s not nice and doc thinks I have the one with compilations where it effects your internal organs and can produce clots. Also found out you can have have seizures with lupus which would explain mine.
Dear Sarah, I am glad you now have a diagnosis that fits all your symptoms. Dealing with the known is much better than dealing with the unknown.
I want to apologize to you because I did not express myself well on the psychiatrist business. I wasn’t at all saying you needed to go to a psychiatrist but that it would be good to deal with lowering stress any way you can. I myself would probably never go to a psychiatrist. I do wish you all the best in dealing with the lupus and keeping it under control. Glad you hung in there until you got the answers you needed! Will be thinking of you and sending healing thoughts your way. Cathy
Thanks Cathy. It means alot and it’s so nice that I can speak to people who understand how I’m feeling I have had a tough 4 years and life has not been kind but I have learned you must remain strong and hang in there where there’s a will there’s a way I believe that strongly and I think after all I have been through it has made me a stronger person. I wish you well and good luck with all you do and achieve in life blessed be
I did not know that about seizures, Sarah, thank you for sharing that! I hope you feeling well tonight and doing okay. Thinking of you!
John, I am glad to hear you are finally getting somewhere because everyone deserves that in their treatment! It is great news that your heart seems to be healing and is not enlarged at this time, I hope that stays true. Thank you SO much for sharing this with us because I think your story and thoughts can really help someone in the future who may be going through a similar thing. I am amazed you went on the treadmill and finished as you did – that is a huge step in and of itself. I hope you are feeling better about recovery and I hope your body continues to heal. Thank you again and talk to you soon! Take care.
Hi
As requested – just letting you know have had my MRI scan and results. Yes my spine is deteriorating and there is one disc herniated in my neck but they do not think it is connected to my PE. I do not need any treatment (thank goodness) and all looks good with my previous spinal fusion. But I am still not feeling that well. I am now back at work full time and am still having chest pain and breathlessness if I walk around too much. Also my legs hurt a lot most of the time – really weird! The tiredness is very waring but I am keeping going! My emotions are all over the place and the hot flashes are extremely frequent . This could be from the warfarin or the fact I had to stop taking HRT when the PE was found. My memory is dreadful and can be quite embarrassing as I cannot find the words I need quite frequently! Back to my GP this week to share all of this with her – but I doubt anything can be done. I’m sure it’s a case of time will heal. So relieved though that my spine is not connected but a little disappointed I still have no answers ! Got to see a neurologist next to check things out as I have various areas with reduced sensations. Oh joy!!
Nicola, thank you so much for the update – I was wondering how you were doing. I am glad to hear you do not need any more treatment right now.
You describe so much of what I went through during and after my PE – I had given up hope that anyone else on a blood thinner got hot flashes!! I do and I keep thinking I should be cold, but I am NEVER cold. I get hot so easily and it always comes suddenly! My memory is not like it used to be and although it has gotten better these last few months, there are still some things I just can’t remember (all around and during the time of my PE or shortly before) and there are times when I can’t seem to find the words I need or remember something that I used to know. I also went to see a numerologist who concluded that the memory issues were caused my stress – I assume the stress of the PE and of healing. I did not previously realize how stressful of a process that was. I become fatigued really easily too or is just never goes away and I remain emotional much of the time.
You’re not alone! Keep in touch and thinking of you. Thanks for stopping by.
Hello I went to see my consultant yesterday for my follow up , I told him
I said was unhappy with the after care of having multiple lung clots ,if I had not have found this site
I would have known nothing,
When I was in hospital a week I felt quite poorly but was quite positive ,but was sent out with no advice at all what to do I then got so bad with post ,traumatic stress I have had to go on antidepressants my family took me to GP who said that was quite normal for any one having PE,s does anyone else think its on par with cancer as at least you have a chance with that but with this it’s instant like a heart attack xso all the advice you get about that PE ,s nothing !!!!!
Hi Carol! Welcome, we are glad you are here with us. I agree with you that a PE is very traumatic and often life-threatening yet here is virtually no awareness about it or about what to expect when you survive one! Often I will explain it to people who do not understand that is is comparable to recovering from a heart attack and they seem to at least recognize a little bit of that. It is very sad to me that more people are not told by doctors what to expect from recovery or that recovery can be long and painful. Many people here have struggled with PTS and depression. You are not alone! I hope we can be of help.
Thinking of you and again, thank you for being here!
It has been about 2 weeks since I had my PE’s. The hospital actually told me I have multiple blood clots in both lungs. It has been so hard with recovery and not being able to do the things I used to. I am just lucky to be alive and the doctor told me that. I am struggling to find a doctor where I live, as it is a very small town, so not many options. I went to one and it was not a good experience at all and he really spent no time going over anything I should be doing or expecting. So a lot of what I am doing for recovery are things I have found online and doing research. I have never felt so lost with what is going on with me and my body now. The doctors told me I have a genetic thing where I am prone to more blood clots so at 35 years old I will have to be on blood thinners for the rest of my life. It is a complete life changer.
I am so glad I found this website as it has helped me so much.
Welcome, Jenn! I am glad you are here. Thank you so much for reading and for leaving a comment.
You and I have a few things in common and one of the reasons I created this site is so that people going through these things could relate to others, find information and know they are not alone. I felt so alone in the beginning, I wanted to help change that for others! I am 31 now (29 at the time of me PE) and will be on blood thinners for life due to an autoimmune clotting condition called antiphospholipid syndrome. It is very disheartening to be young and think about being on this type of medication for so long and the possible consequences of that – or of going off them! There are people of all ages here too, which just goes to show how a blood clot can impact anyone and it does!
I am glad this site has helped and please let us know if you have questions or if we can help. Everyone here really tries to share as much as they can to help one another out!
Welcome again and have a great night!
Just wanted to say I’m a fit, otherwise healthy 31 year old with no history of illness, non smoker, regularly work out and eat healthy, no partying and I’m about 6 weeks out from my pe diagnosis too. I’m also available to answer any questions I can, so feel free to ask away.
I was diagnosed on the 25th of Feb 2014 with PE. However I was an over the road truck driver. I was in Texas when I got sick with pneumonia. I took all the over the counter stuff that I could to shake it, while each day I would try to recuperate in a hotel room, turning down work. Well a day turned into a week quickly, and before I knew it I thought I had to make it back to my home doctor in PA.. I knew that I wasn’t getting enough of air, and that it would be a struggle to tie my load down. So my boss gave me a load that headed north. I was ok while driving, I had all my faculties, and was very alert. So I made it home finally a couple nights later. I walked in the door and my wife could not believe how grey I looked and she said that my lips were blue. We had an appointment with my family doctor the next morning and had absolutely no idea that it was PE along with pneumonia. So we went to the doctors, and immediately they called the ambulance to go to the hospital. I was about to learn how serious my condition was. Again I thought it was just pneumonia or bronchitis. Nevertheless I was in the ICU and a step down from the ICU for 9 days. Not a fun experience at all. Along the way I believe I received world class treatment at the Lewisburg Evangelical Hospital (many thanks to the great staff). I have been home now for 4 full weeks. And during this time I have had many successes. When I came home I slept on our sofa downstairs. The oxygen was placed in the house for my use whenever I needed it. About the 3rd night when I tried to climb our steps to go upstairs to sleep in my bed I had to stop 3 times to catch my breath, and 1 final time after getting to my bedroom. Not exactly as planned. After building myself up day after day, and trying to go for walks outside when weather permitted, I am now breaking barriers, and getting on with my life. My story is a triumphant story, one of encouragement, and of victory. Just Sunday after church I took my 40 pound boy on a bicycle ride with me (on a seat designed for him bolted to my bike). We rode for over 6 miles at a steady nice even pace. Today being the day after, I can take really deep breaths, for the first time since this all started. As your faith is, so is it unto you. In other words you must believe in your healing. Me ? I believe in the Master, The Bright Morning Star, The Redeemer, The Lover of our souls, that’s right I believe in Jesus Christ. I believe Jesus was crucified, dead, and buried, and on the 3rd day He arose again. I believe the Bible is true, from cover to cover. And the Bible says that by His stripes we are healed. May the LORD GOD bless you all, peace be unto you.
Hello, Eric and a warm welcome to you! Thank you for being here and for so courageously sharing your story like so many others have. We are glad to welcome you here!
Your story is a very important one because it helps to show how these symptoms of PE can often feel like/look like/sound like that of pneumonia or bronchitis and some people are even told that my medical professionals! I am so glad you got help in time and that you had such a great medical team to care for you. Speaking as someone who also had a great medical team, I know what a difference that makes and that we are very lucky to be able to say we had that.
Thank you for sharing about your recovery thus far as I know it will give others hope, as it has me. I am so glad to hear about the bike ride with your son, and I hope you and he can continue on anymore. Thank you for sharing your faith and testament. I am so grateful you are here to speak with us. I believe it is truly a miracle that we are each here on the Earth and it is one of the reasons I started this site to help others along this journey.
Much peace and joy to you, Eric. Best to you and take care and keep in touch.
Hi there, I am an 21 year old male and around 2 months ago I was diagnosed with a bilateral PE. I had no DVT before the PE so it was pretty lucky that it was discovered. It’s likely I got it because of a strong family history of thrombosis. A couple of months later and I’m feeling good. Fortunately, I made a quick recovery and was able to exercise a bit just a couple of weeks after the PE. But now and again, I get weird pains in my chest that make me feel anxious that I have a recurrent PE. Is this normal? At the moment I’m feeling particularly anxious over a pain that I’ve had for the last few hours. It’s like a dull ache in the centre of my chest, but I can breathe fine, and fully expand my lungs without feeling pain but just a slight discomfort when I change position. I’m going to the doctors tomorrow anyway to have my INR checked and will mention it but should I be particularly concerned about these pains. Usually they go away the next day, but I just can’t get rid of that niggling feeling that it might be another PE. Can anyone relate?
Hello Freddy and welcome to BCRN! We are so glad to have you here. It is so startling to me when I hear of young people in this situation (I was 29) and it reminds me that there are no typical patients when dealing with a PE and that anyone can suffer from one! I am glad you are here to talk about it and share your story.
I am also glad to hear you are on the road to recovery. This is important because it is a perfect example of how recovery and LENGTH of recovery time is different for every single one of us. Thank you for sharing that.
I do know it can be normal to feel strange pains here and there and when I do (which happens less and less, but was more frequent in the beginning stages of my recovery), I was concerned it was another PE. I think it is very normal to think about that! If it gets worse, does not subside with rest or moving or you can’t breathe, contact your doctor just to be sure. Mine usually subsided pretty quickly when I shifted my body, laid down or took my mind off of it.
I am glad you are following up with your doctor (today it looks like) and I hope you got a chance to mention this particular chest pain. I hope all is well and it is just a part of recovery! Keep in touch.
I am a 53-year-old nuclear medicine technologist. I have spent the last 22 years doing V/Q (lung) scans, which were the best way to diagnose PE before the invention of CTA and are still used for people who can’t tolerate contrast or whose kidney function is not good enough to give contrast. So you’d think I would recognize a PE when I had one. Not on your life.
First, I want to tell you that my father had massive PE in November 2009. His mother had multiple DVT/PE episodes throughout her 86 years (until one finally proved fatal). He was tested for the three most common coagulopathies, but they were all negative. He also subsequently had 3 more episodes of DVT even though on therapeutic levels of warfarin, so they placed an IVC in the summer of 2013. My mother had “buckshot” PE’s in both lungs in October 2012, which the doctors think was caused by multiple small clots formed in her heart due to afib. My sister has SLE.
In November, my OB/GYN put me on Provera to treat endometrial hyperplasia (overgrowth of the uterine lining that can become cancerous if not treated). I expressed concern over my family clotting history, but she assured me that progesterone wasn’t nearly as dangerous as estrogen and the risk of endometrial cancer was higher than the risk of PE.
Starting in December when my family was here, I started noticing having less energy and having to breathe harder when doing daily tasks. I put it off to being out of shape. It was mainly mild, really, just annoying. Then April 6 in the evening, I felt quite out of breath just folding laundry and doing some household things. April 7 my mother went to the hospital lab to have her INR drawn, I had to sit outside the hospital about halfway between the parking lot and the lab to catch my breath. Darned asthma, it always kicks up about this time of year.
I fell asleep in the recliner chair watching the news and woke about 5:30 am on April 8. I got up to go to the bathroom and barely made it there. I was huffing and puffing so badly I felt like I had just run three miles as fast as I could. Then it happened. That “feeling of doom” as I went through the door to the bathroom to sit on the toilet. It felt like if I didn’t do something my brain was going to shut off. Permanently. I sat and calmed my breathing, slid on a pair of pants from the hamper, put on my houseslippers and made my way back to my mother’s end of the house. I woke her, said “Get your clothes on, we’re going to the ER” and went out, got in the car and drove us to the hospital. I know, stupid move, but I felt fine as long as I was sitting still. She ran and got a wheelchair for me. A doctor came to the car and pushed me in, quizzing me all the while about pain (I had absolutely none) and what kind of shortness of breath I had (asthmatic or something else). By the time he wheeled me into the ER bay and hooked me up to telemetry, my heart rate was 130+ and my oxygen sats were 95. He thought I might be having a cardiac event, but my rhythm was normal sinus, just faster than normal (I usually run 65-70). They put in an IV and ran labs. It took him just about 10 minutes from the minute he saw me to decide I had pulmonary embolism, but I didn’t have any sign of clot in the leg or arm. So I got to have a V/Q. Big PE blocking out over half of my right lung and two more medium-sized ones in the left. Got put on heparin for about 4 hours, then they switched me to lovenox and coumadin. I wondered why they didn’t keep me on heparin, until the inpatient doc came in and explained to me that my platelet count from the ED bloodwork was too low to leave me on heparin. Evidently my body had made so many clots over the past 6 months or so that I didn’t have many platelets left.
I got better over the course of the next 2 days. My HR went down to 90 resting and 125 while walking and my 02 sats stayed normal, so they let me go home on lovenox and coumadin. Boy, I sure have less energy than I thought I did while I was in the hospital! I hope it gets a bit better so I can at least take a shower.
I’m wondering about return to work. My job requires long hours standing and 8000 steps a day on average, plus pushing wheelchairs and gurneys and hospital beds, lifting lead-lined cans and pulling bed-bound patients from bed to imaging table. I’m wondering how I’m going to do it. Unfortunately, I’m the only household income besides my mother’s social security. All the rest of my family lives in West Virginia, and I live in Silicon Valley, CA where rent runs really high. I wonder how long I can manage to keep up even with disability payments. Hope I can get limited duty return so I can get back into my career. The high physical demands of my profession concern me. I feel like the RN who commented above.
Hello Lori and a warm welcome to our community. We are glad to have you, and I want to thank you for sharing your story.
As I was reading it, what was foremost in my mind is the resounding thought that PE can happen to anyone – and I do mean anyone, as you know! It is so important to share a story such as yours because even as a healthcare professional, you still have demonstrated the importance of looking out for the signs and symptoms of this type of event. I am so glad you got to the hospital when you did and were able to get help in time. It is almost important to note that so much of this can be hereditary. Thank you so much for sharing your’s and your family’s history and I am sorry to hear of the loss of your grandmother as well.
You are not alone in what you are facing in your recovery in terms of worrying about getting back to work or even being able to do normal things such as shower or – for me – walk up the stairs, let alone put on a pair of running shoes again. I do know it DOES get easier as time goes on and adjusting to what happened with my job (I was not able to keep it) was the hardest part of it all of me. I will keep you in my thoughts that you are able to go back to work slowly and as your recovery progresses. I do not want anyone to go through what I (and many others have), and we need people like you to take care of people like us when we are ill! 😉 I also had really low platelets in the hospital and could not stay on heparin for very long. And yes, my energy was zapped and I am still struggling with that.
I really appreciate your candor and emotion you put into this story. If you ever want to share it as a post, just check out the details under How To (homepage) and then Share Your Story). I would love to share it with more readers, as I think it is important for others to read. Thank you so much, Lori. Thinking of you as you face the recovery ahead. Take care and keep in touch!
Thank you, Sara. I’ll clean it up a bit and add some on now that I’m a week out from the event. I managed to get a shower Sunday night, albeit sitting in my mom’s shower chair. It was wonderful. I still have no stamina for walking and I found out quickly that lifting things over my head (e.g. cans into the cupboard) or picking things up off the floor (bending my head down to knee level) are not good things for me to do right now. I have FMLA from work and California state disability will be giving me 50% of my pay, so that will help. Thank goodness I waited till the ragged edge of disaster to do my taxes, as the IRS will unwittingly contribute to my rent payments the next month or so. If my INR comes back in a good range today I can stop shooting myself up with Lovenox and go seriously about the business of adjusting my warfarin dose. Thanks for your kind comments about my writing. I minored in magazine journalism 30+ years ago at Ohio University E.W. Scripps School of Journalism (my major was biochemistry with a genetics emphasis). My professors all said my forte was non-fiction humor writing. I just wanted to write for OMNI (may it RIP) or Discover or some such scientific publication. I’m still frustrated with my energy level (or lack thereof), but I must remind myself it was only 7 days ago. I also keep telling myself that if I can’t manage to do nuclear med anymore that I can always re-train as a Clinical Laboratory Scientist. It will only take a year and it’s something I can do without having to move patients. And I will still be helping people. That’s the most important part.
Thank you so much for letting me know how you are, Lori! I am very familiar with Ohio University and Scripps being in Ohio. That is very cool that you went there!
I hope you are starting to feel a little better as some more time has gone on, but I also remember this is a VERY long process and sometimes I would not feel better for weeks at a time – then I would wonder if there was something wrong with me. I now lifting anything (even my own arms) and bending down were also very hard for me in the beginning. I could not even help to put away groceries!
You and I are very similar in that we both have the need to be helping people. I know I am not satisfied unless I am doing that in some capacity. Another reason I do hope this blog is a help to others. I hope you are able to train to be a Clinical Laboratory Specialist when you are feeling better. I know how important it can be to contribute to the well-being of others.
Again, thank you so much for the update. Thinking of you and wishing you well!
Hi Sara
I am so grateful to find your page ! 4 weeks ago I had the diagnosis of DVT / PE from a knee reconstruction. I was admitted to ICU etc.
I’m back at work now but really struggling. Doing the smallest efforts just wipes me out. I did a 45 minute walk on the weekend and had to sleep for 3 hours afterwards. Seems crazy. I should mention here I’m a runner / cyclist and swimmer so normally I’m very active. And this is severly impacting on my knee rehabilitation.
I feel so much better knowing this fatigue is ‘normal’ post DVT / PE …. I was actually getting quite angry at how I was feeling physically.
Thank you to everyone for sharing your experiences and helping me to understand that what I am experiencing is not unique.
Wishing all a fast(er) recovery 🙂
Hi Colleen. I am really glad you found this page too – thank you and welcome!
I am (well, I feel like I should say WAS) a runner too and there are several other athletes here and yes, I know EXACTLY how you feel! You are, by far, not alone in feeling like it takes all of your energy to do something seemingly simple. It is so disheartening having been an athlete to all of a sudden not be able to walk around the block or take the dogs to the park without a struggle. I can completely relate to that! I ran a 5K this past July (as a comeback race, or so I thought) and I think I am STILL recovering from that. I pushed too hard and my body was not ready to go back to it. Now, I am taking things very, very slowly and walking some days. I do notice I am starting to feel more prepared to exercise and am looking forward to when I have that anxious “I need to run” feeling again, which sadly, has not happened for me yet. I sometimes wonder if the universe wanted me to take a break from running after all I was doing?!
I cannot imagine recovering from a knee surgery combined with this, but I can tell just from your comment that you are a strong lady and I know you will get through this. You’ll have to keep us up to date!
Yes, you are very normal and what you are experiencing is all a part of recovery as I (and so many here) know it. Thanks, Colleen and take care!
Sara you’re story really resonates with me (both being runners) and seeing as your well ahead of me on this road to recovery I hope you don’t mind if I ask about your experience ? (and apologies for monoplosing you in the process)
I must admit when I read your comment about the first question you asked the doctor was ‘can I run this weekend ?’ I actually laughed out loud because my first question was very similar. 🙂 I knew when I read that I was on the right web page ! 🙂
I know everyone’s experience and recovery is different but I wanted to know more about the 5km you did. How long after your diagnosis did you do this ? And did you do much training before hand ? Or did you just get out there and have a crack on race day and see what happened ? Did you realise you’d done too much at the actual race or was it after ?
Do you sometimes find now when exercising that is ‘mostly’ feels ok at the time but hit the wall very quickly and the effects last a long time ? Let me give an example of what I mean …. I walked for 45 mins and yes there was some pain in my leg and breathing was hard, but the after affect smashed me. I had to sleep for 3 hours from just a 45 min walk !
I’m just trying to learn of other athletes experiences so I have a better understanding of the spectrum of symptoms / incapacity that can be experienced.
On a side note, I recommenced physiotherapy yesterday for the knee reconstruction, and whilst it was difficult, I wasn’t totally wiped out …. that was 10 mins cycling and some hamstring curls and leg press.
My orignal plan was to return to running in late May (knee reconstruction was done early Feb) and my rehab should have been completed by then. Clearly now I have to reconsider this goal. My treating specialist keeps saying ‘it will take time’. LOL well for me that means 3 to 4 weeks …. or did. I understand now it’s more like 3 to 4 months.
Thanks again Sara and I hope you don’t mind all the questions. 🙂 x
Hi Colleen! Thank you so much for writing back and your thoughts. I am sorry for my delay in answering. The site has been going through some changes to make things run a little smoother so my responses have been delayed. 😉
I ran the 5K just about a year (and a month) after my PE. I did train for it. It was in the summertime, which I think was hard because of the humidity here in Ohio. I did not train as well as I would have liked, but I did train for it. I trained in running and walking intervals, but ended up doing more walking than running. I remember it was hot the day of the race, and I was very tired, which I think impacted me. I felt like I was doing too much during the race. I went out a little fast for me (forgot my intervals and just ran for it) and I think that made it harder, combined with the increasing heat. It was not a horrible race. I just felt like I did too much, too fast both in training and on actual race day. I trained for about six weeks or so, but my training was inconsistent at times. I will say, I have not run since then very much at all and have not raced since then. It just took SO much out of me. I have not felt the same since. I want to go back to training by building a solid base and really taking my time. I thought having the goal of a race would be good for me, but now I want to train without a race in mind and just run and build my base back up as slowly as I need to. 😉 I hope this can help you in some way. I sometimes think the universe wanted me to take a big break from running anyway! I was very angry at first, but now I have come to peace with what happened in terms of running.
I have not been back to regular exercising, but walking, but now almost two years out from my PE, I do know it is time to get back to working out on a regular basis. A lot of it has been mental for me too – I just have not been ready to run or workout. And it used to be something I lived for! I really attribute it to what I went through and all the trauma from that. I would say the after effects of exercise are pretty intense, though. I get tired very, very easily and have to really rest after a walk – even if it is just taking a walk with my dogs. I am hoping this improves as I build my stamina back up. I do not at this time have pain or trouble breathing when I walk that is outside just normal effects that comes with exertion when there hasn’t been any in awhile. 😉 I will have to let you know!
Please let me know if I can let you know about anything else that happened to me. I am happy to answer or help with anything that I can! I do not mind questions at all. Just let me know! Also, let me know how your recovery is going. I would love to hear.
I hope you are well and talk to you soon.
Hello Sara,
Well it has been a while since I have joined in any conversations my recovery continues to move forward. To everyone who is still fighting or in the early stages of PE my thoughts are with you. It is sometimes hard reading the stories and knowing that the journey will be hard, with a lot of uncertainty and that our lives have been forever changed.
So far my recovery continues to be good . At 5-1/2 months since being diagnosed I have returned to a more normal life and I am regularly riding again. I also just had a follow up CTA scan which showed that my lungs are recovering well and that my enlarged aorta is stable and no longer a concern. My hematologist is also considering moving me off the thinners at the end of this month.
The only real downside I am feeling these days is when I try to ride at an aggressive level. Anytime my pace gets elevated, I am talking heart rates above 165 bpm I get very sharp chest pains. The doc’s say this could be from pulmonary hypertension and that this will most likely be my limiting factor for months to come. Even though I consider this a down I do realize how far I have come since being diagnosed.
There is an upside to this though, since I can not focus on racing I am beginning to help new riders and I am thinking of getting certified as a cycling coach.
I will continue to read everyone’s posts and while I may not always join in the conversations my thoughts will be with them. Take care and wishing a speedy recovery to all.