I get asked a lot, how long does it take to recover from a PE? Most individuals that I have talked to about recovery from a pulmonary embolism want to know, how long they can expect to be healing. The short, uncomplicated answer is recovery is different for everyone. Keep that in mind. The extent of the damage to your body and other organs, underlying health issues, additional diagnosis and potential or discovered clotting disorders can all factor in to answer how long does it take to recover from a PE?
The longer, but still less complicated answer to how long does it take to recover from a PE depends on how your body heals. Contrary to common belief, blood thinners in fact do not dissolve blood clots. Only the body can dissolve a blood clot and in some cases, the blood clot does not dissolve and will not dissolve. As the blood thins (for example when on a blood thinner) and travels throughout the veins, it actually hits the clot and can eventually break away enough to flow by it in some cases. The body can also accommodate for the damaged area by creating scar tissue and rerouting blood flow through or around the clot. While a blood clot may no longer be at risk for breaking off and causing additional damage once turned to scar tissue, it is still there and is important to note when speaking of recovery. Your blood clot may never dissolve. Knowing this early on saved me a lot of worry and disbelief later in my treatment. When my DVT didn’t completely dissolve, I wasn’t left screaming or in tears wondering, “What do you mean?! No one told me that!”
I was diagnosed with a DVT in my left leg in June 2012. The clot broke free from my calf, right behind the knee, traveled through my heart and lodged into my left lung. I was in the Cardiac ICU for six days and the hospital for ten days total. It came out of nowhere and almost ended my life before I turned 30. My first conscious, non-drug induced, rational question (my very first question was ‘Can I run this Saturday?’) to my doctor after being released from the hospital was, “How long does it take to recover from a PE?” Followed quickly by “How long do I have to wear these compression stockings?”
He answered quickly to the latter “for about six months or until I tell you to stop.”
I wasn’t prepared then for the answer to my first question, how long does it take to recover from a PE? “Recovery from a PE generally takes about one to two years.”
Recovery from a PE takes one to two years.
Not to be the bearer of bad news (although I do have a pessimistic nature to be honest), I think more patients need to be told this – and more doctors need to realize it.
Length of treatment can vary from a few months to long-term over many years and is determined by factors your doctor should discuss with you. If he or she does not discuss length of treatment with you or to your satisfaction, ask for clarification until you receive a satisfactory answer!
At least 3-6 months of blood thinners are typically recommended, with a preference for long-term or often lifelong treatment in patients with unprovoked (occurs out of the blue, without any clear triggering factor such as surgery, pregnancy, injury, etc.) clots that occur in the pelvis, thigh, and/or behind knee (DVT) or a PE.
Potential Factors of a Higher Risk for Future Clots (ClotConnect.org)
- Gender (men have a higher risk for recurrence than women)
- Presence of a strong clotting disorder
- Obesity
- Significant chronic leg swelling (post thrombotic syndrome)
- Positive D-dimer blood test obtained while on blood thinners
- Positive D-dimer blood test obtained 4 weeks after having come off blood thinners
- A lot of left-over (residual) clot on follow-up Doppler ultrasound examination of the leg.
- Strong family history of unprovoked DVT or PE.
- In addition, patients who had a PE more likely have a PE as a recurrence and have a higher risk of dying from the recurrent clot, compared to patients who “only” had a DVT.
A PE wreaks havoc on the body at the vascular level and creates micro-damage we can’t even always see – not to mention what we can and do see. In my case, my clot traveled through my veins, right lung and heart before lodging in the lobe of my lower left lung – that creates a lot of potential for damage to arterial pathways that just take time to heal. Even 14 months out from my hospitalization, I still have days where extreme fatigue, anxiety, pain, depression and listlessness consume me to the point of interfering with normal life. I imagine this is all still a part of recovery and I may eventually have to take steps to learn to manage these feelings in my everyday life. The emotional and psychological effects of a PE are all-too real, all-too debilitating and all-too ignored.
And while it may take you upwards of a year or more to start to feeling physically normal and participate in activities again, many people, including myself, are diagnosed with blood clotting conditions (such as antiphospholipid syndrome as in my case) which require lifelong monitoring and medication to try to prevent a recurrence of blood clots. While I consider myself far into recovery after a year or more, I will always have the possibility of another clot and the lifelong treatments that come with that. For me personally, a PE was not just something I got, healed from and now I can go about my life without having to worry about it on a daily basis, although that is the case for some patients.
So in answer to how long does it take to recover from a PE? One to two years, depending on your specific situation. Be sure to discuss recovery and possible setbacks with your doctor in order to be prepared to face what can be a long and seemingly overwhelming prognosis.
Share your story. Did your doctor answer how long does it take to recover from a PE? How long have you been recovering? Does the possibility of a long recovery scare you? Was your recovery shorter or longer than 1-2 years?
There is hope for healing and you are not alone,
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I haven’t been told a lot about recovery by either my primary Dr or pulmonologist. In fact I feel my symptoms/issues are being dismissed as trivial and that I’m expected to feel fine 6 months after PE and pulmonary infarction in left lung. Actually I feel pretty miserable: extreme fatigue, anxiety, chest discomfort, palpitations. Really a pretty lonely feeling. Glad you have this bloc for support. Thank you.
Hi Kathi. Thank you for being here. I hear all too often that people’s symptoms, not to mention feelings, are dismissed and that is very heartbreaking. From my experience, the things you mention feeling 6 months down the line are very normal – I felt them too, and still do at times! You are not alone, just remember that and please let us know if there is anything we can do to help. I know it sounds cliche, but hang in there and best wishes to you as you continue to heal. The loneliness is unbearable at times and one of the reasons I started this site to bring us together into a community that cares!
Hi Sara – thanx for your reply – it helps to know Im not crazy and I sometimes think perhaps because I am older (63) that Im not expected to feel better which is a shame – anyway I have also wondered about some symptoms that again are sort of shoved aside that concern me such as pain in my toes and ankles – I like my dr and would hate to have to find a new one but I just dont know what things i should be concerned about and if I look online which of course drs hate patients doing, just about everything I am concerned about should not be ignored – its discouraging – I wondered if other PE survivors have had to look for another dr without looking like a complainer or med seeker which I am not – I hate taking meds and my dr always tries to put me on antidepressants – Im not depressed Im scared and just dont feel Im being listened to – am I asking too much and will time simply be the answer to how I feel most days? thanx so much for having this avenue of support!
You are more than welcome, Kathi and I think a lot of people feel or have felt the way you do at one time or another, including myself. I also turned online for most of the information – there just is nowhere else to turn it feels like, especially if you want to connect with others. I could never imagine myself walking onto a hospital floor and talking to other patients about a PE, but I can talk to other survivors online all day about our experiences. I think it is okay to go online as long as you follow-up with a medical professional about specific concerns, especially if it might be negatively effecting you.
I have heard of others experiencing pain in the toes and ankles so you are not alone in that!
You are not asking too much to be listened too – whether it be from a professional or not – and that is one of the reasons I started this site. To give us a place to talk and discuss and share experiences. I think time does play a roll in how we feel and recover, but I also think it is not easily dismissed after all that we have been through. Some days are great, others are not. I am glad we are on this journey together.
WoW! I thought it was just me. On March 2, 2014, while at work, with NO symptoms, I collapsed. When I came to, in the ER, I was told I had a “saddled , bi-lateral PE”. I was on a cardiac floor for 13 days. Every doctor that came in my room told me I need to buy a lottery ticket because usually ” people don’t survive a bi-lateral PE”. That wasn’t the best thing to constantly hear. I’m taking warfarin , 8mg daily , but I haven’t been told for how long. I still don’t feel “right”. I am sleepy most of the time. Any sort of pain scares me. It’s horrible!!
Hi Thea and welcome! You are most definitely not alone. I was also in the cardiac ICU for quite some time and was told similar things by my doctors – I was lucky to be alive. Recovery takes a long time and is slow, especially in the beginning, but things do get better slowly and over time. It is a horrible recovery, yes, and very scary at times! Thinking of you and hoping you start to have some better days along with the hard ones. Keep in touch.
Hello. I too had a real scare with a PE. I am 33 years old and have no prior health issues. I was brushing my teeth and out of nowhere I was overwhelmed by severe shortness of breath and feeling like I was going to die. It was terrifying! Thankfully I made it to the hospital and the doctor revealed that I had a massive saddle emboli. I was told that I am of the lucky few to survive this type of PE. It was a large DVT behind my left knee that broke off and traveled to the lungs and I was not aware that I even had this clot. I had no leg pain prior to this. It has been 3 months since this all occured and i have constant tingling toes with slight swelling in the feet but not any major swelling. I have another CT scan and Echocardiogram in a week.I feel fearful at times and almost paranoid about every discomfort in my body. I empathize with everyone on this site. It is comforting to here that my residual symptoms are common. Some days I feel close to normal and other days I still experience mild chest pain and an elevated pulse. I’m taking 6mgs of warfarin daily and i sometimes feel different for a few hours after taking this medicine. This whole experience has truly enlightened me to how fragile our lives are. It has also drawn me much closer to the Lord and i try to see my life being spared as a blessing and an opportunity to live my life in a better manner. It’s not without a degree of worry though. I’ve read through a few different sites similar to this one and I finally felt like sharing my experience. I have yet to actually meet someone who has suffered through this same experience.
I had knee surgery December 19. Thought I was doing fine. Jan 15 I passed out. My husband got me to the local er. And I was diagnosed with a saddlebag blood clot to. I was transferred to another hospital equipped to handle.
Kathy, as I said…I went to my GO about 5 times in a few weeks separately to my schedule appointments, because I too felt like I needed answers for new symptoms popping up. He was actually so wonderful and said that anxiety is definitely a part of the recovery process and as I start to improve, it will ease. I was given some medication to take the first day in emergency but he feels that as long as I am ‘just scared’ and not actually suffering uncontrollable attacks, that I should feel much better soon. I said to him-I feel like I keep complaining and worry about whether the clots are getting smaller or traveling …it’s the unknown that is frustrating isn’t it? He just said- “so would I. Ask away-you are not going crazy, it’s a big change to adjust to and it will be a long recovery” it makes all the difference that I can talk openly to him. It’s important to walk out feeling calm and empowered with new found knowledge or even just being understood. So if you feel unhappy with your care, perhaps try someone else x
This is so empowering to hear your doctor is supportive, Suzana. Thanks for sharing! So many people are not fortunate to find a doctor who supports them or recognizes their concerns, as I am sure you have read.
Wow u are lucky u have a dr like that I was at a&e last week told I had multiple clots on both my lungs giving injection and put on blood thinners sent home two days later have really bad pain in my back shoulders and neck and feeling sick all the time can’t seem to get answer to y I feel so bad
On April 7, 2020, I was taken by ambulance to Integris Baptist (my choice) and barely breathing. I just remember arriving at the hospital and everything went black. I had gone into cardiac arrest and from what I was told, I had a massive amount of blood clots in both lungs (Saddle P.E.’s). Once they brought me back and stabilized, they told my sister that I may have suffered brain damage. They also said if they performed the surgery to remove the clots that I could die and without the surgery I would die. Needless to say, I was in ICU for three and a half weeks and I left the hospital after 5 weeks (against medical advice). I currently take Warfarin on a daily basis but still have no feeling below the knee on my left leg and my chest hurts 24/7. I too was told I am a miracle considering the amount of clots they removed and my gallbladder was also inflamed at the time and needs to come out. I know after 5 weeks in bed I could barely get up or walk for that matter and looks as if it may be a long while before I am anywhere back to normal and I’m only 49 years old and have always been active and hard working. So we will see how this plays out!
My boyfriend just got out he had a blood clot in both lungs and one in his leg. He is home but not out of danger. They said they can not believe that he just walked in. The blood clots are acute massive pe every doctor we have talked to. I was scared I was going to loss him and still scared and think why did they send him home so soon if he is in danger if something would happen it would be better for him if he was still at the hospital they would be able to do something at home I would not be able to do much but call 911 then wait for them.
I was only kept in over night with a dvt in my thigh and 2 in my lungs. I was straight back to work and a week later I’m still feeling very tired and flat.
Look for another dr if your dr isn’t listening. Do not care what anyone thinks, it’s your life. I survived DVT/PE by the Grace of God. Everyday isn’t rosy because I’m a pharmacist and I have to be on my feet while working.
I wear the compression stockings though I despise them because they are uncomfortable but it is what it is. I’m 50, no high blood pressure or cardiovascular history etc but God delivered me by prompting me to take an ankle swelling that wasn’t even painful serious. It broke off by the time I got to the ER. My main issue is the medications. Warfarin is rat poison and requires INR monitoring too frequently. Besides I couldn’t sleep 4 straight days after leaving the hospital. It made me feel horrible and gave me insomnia.
I finally agreed to taking xarelto but after being in traffic for 3 hours yesterday, I felt serious back pain. I’m hoping after 3 months they will take me off this relatively new med being pushed by drug reps as it finally has a $25,000 antidote as opposed to the old no-antidote xarelto.
I was totally without symptoms but for the swollen ankle which wasn’t even painful. My breathing was excellent and yet the worst could have happened but for God’s mercy. I implore survivors to ask for a personal relationship with Christ, pray to God for healing and trust him. Your fears will disappear. After all what do you have to lose by trusting in Jesus as Lord? Nothing. You passed through fire and he helped you. Xarelto does cause muscle and back ache but don’t go over the counter or self medicate. See a good physician! May God perfect the healing process for all of us survivors and bless all those who started blogs like this and those who encourage others by sharing their stories❤️
Amen. My brother just went to the hospital due to pe and was kept there for 3 days. He is on blood thinners now but I know it is the Lord that will recover him. He is a believer as well. He’s only 37 though so this was scary.
Bless you Sara for this site. I am in my second year of recovery and just frustrated at the ups and downs of how I feel. Took a two hour flight last week and I swear I am getting my initial symptoms before I went into crisis two years ago. So I am seeing my Primary Care doctor tomorrow because I think I need to see a pulmonolgist…the hardest thing is to want to feel better and just can’t. And I guess being fair to physicians, they can’t help. It’s 2014 and this illness does not have a ‘magic’ pill to help us.
Thank you, Gwen! I am glad you found us and are here. I will be thinking about you and hoping you find answers. The flight may have elevated your risk so if you have symptoms of a PE, make sure you get to the ER for help. Also, it may be beneficial to see a hematologist as well. Keep in touch about your findings, if you wish. Take care. Hugs!
Thanks Sara for bringing this site together … this has been a culmitave thing with me , and I got raspy in my breathing around the 9 of August in the mid evening … 2016 . I was able to call 911 myself but my husband and friend were supportive . What prompted the initial shortness of breath was suddenly plopping myself down with some force onto a chair , and the jolt caused the abrupt gasping in which I was grateful that at least I was able to still get some short breaths but it was scary because I never ever in my life experienced that ; it lasted about 90 seconds then seemed to calm down but the ambulance was at my door in 4 minutes maybe 7 , and told me I’d be making a dumb mistake if I didn’t go get it checked out . I knew he was right . So that ran the X-rays and did an iodine test to be able to find anything on the lungs and indeed they did . The lung and hemo specialists at Holy Cross Hosp near DC said it was good that I came in and in most cases the clot (s)? on the lung will go away and all he has seen do go . They said they’re weren’t any in my feet or legs but since they all get started there , had already moved . What gets me is that my ankles had started swelling a couple years before and my other Doctors never mentioned any of those danger factors or likelihoods ! Why is it we always learn the hard way ? Mine had its roots in contraceptive pills I took for 18 mos to eliminate hot flashes -I’m 58 . Of course I’m off completely except for estroven weight control and estroven nighttime since its soy based and has no progestin which is the main culprit ( estroven merely stimulates the bodies “estrogen receptors”, thus eliminating the hot flashes . It’s effective , and I should have known better , but still amazed that non of the medical staff explained or even seemed aware that my ankle swelling could have been the result of blood pooling . I’m rotating natural blood thinners like niacin and omega 3 ‘s , cayenne pepper and dandelion in capsule form , as well as chlorophyll even though it has vitamin k it’s supposedly ok to not overdo by of it on a daily basis . I’m to be remaining on Warfarin for at least 3 months they said and following up with the hemo specialist . In the hospital , they had me on a couple types of thinners , one of which attached the clot in more than one way and sought any out in any way . It’s all been recent , we are in a terrible heat wave in this town , and during August I’m at my worst anyway because I hate DC humidity and that another reason I had been hibernating inside in the A/C . I didn’t feel like doing much but now it’s making more sense why I have t felt like doing much in the heat esp. I wiggle my feet frequently where before I could read in one position with my feet in a sitting position …no wonder I had the swelling , esp with those B/C pills . And all this at a time when I was about to drive across country ! One good thing , is that the swelling in my ankles went down by 96% !! They are no longer noticeably swollen , and that is after 2 weeks of thinners but was 70% improved my 2nd in the hospital when on an IV . God Bless Us , Everyone !!!❤️❤️❤️
Hi Sara,
As I lay here at 2am, 2 weeks post Pulmonary Infarction, I thank you for starting this blog. It is so reassuring reading others stories and realizing I’m not alone or crazy!
I too had an infarction in my left lung that left me with a dead lower lobe. I was wondering if you coughed up blood? I do and it worries me that it hasn’t stopped. I went for a follow up to the pulmonary specialist (whom I will never go to again, very incompetent, but that another story) well he took me off the lovenex injections and put me on Xarelto, he also gave me a Zpac for the fluid in my lungs. I am still coughing up the blood (less mucous now) but I get very light headed every time I cough and it scares me. I have made an appointment with the specialist who saw me in the hospital but it’s not for 10 days! Sometimes I feel like rushing back to the ER, I’m glad to hear we all go through that! It’s the not knowing that scares me. Thanks for sharing.
I am glad this website exists
Feeling bless this has been the hardest thing I’ve been threw i have a pe im so scared for my life every day im afarid im going two die pls help i feel hopeless
I am sorry you are really poorly yes it is scary but have faith in the Lord to get you
Through the next weeks to come and it won’t feel as bad I will pray for you xx
Feeling bless i have a pe i was diagnosed in November its been a very horrible episode im 45 yrs old i have never been sick a day in my life plus i suffer with depression i feel like im going crazy i been two the er a millions of times the doctors think im nuts i have not seen the right doctor yet im still afraid i don’t no what to anymore im tryna be strong for my baby gurl i dont wont to leave her she needs me im nervous reck please pray for us im so scared
I am so happy to have found this website. On April 7th I rushed to the ER because I woke up unable to breathe. I was told that I have a PE in my lung. They gave me lovenox and warfarin and sent me on my way. The night of the 8th I had to go back to the ER because the pain was unbearable. They admitted me that night. I stayed in the hospital for 5 days and was sent home. I have no idea how big my clot is, nobody really explained anything to me. They told me it was because of my birth control and that was it. I’ve been on birth control for 10 years. I’m 26 years old, btw. I just feel like none of the doctors think this is a big deal, I mean they sent me home without telling me anything. I have to give blood often and keep my INR between 2-3. This whole situation just really sucks.
Amber, I am very similar to you. I am 26 and was diagnosed with a pulmonary embolism on my birthday. They told me it is due to birth control but give me no other answers. I still have all my symptoms and go to the er frequently I feel.
Hi I’m had back surgery March 5th .. I’m asthmatic I woke up on April 10th could not breathe thought it was a asthma attack . I did cough up bloody mucus .. I was seen by my doctor sent to the hospital had BP 80/60 pulse 120 to 150 abnormal E k g O2 sat was 94 . I didn’t even look like I had a blood clot problem .CT scan done I had multiple clots right lung every vessel was full. They say I was a miracle. I was on IV heparin then was on Lovanox and Coumadin for 5 days in hospital discharged without 02 I had desated in 70s but I wanted to prove I could go home with out ..I get short breathe pain feels like a knife in my chest and now on 02 seen pulmonary specialist walked 700 ft and desated .I desated with respiratory therapist. Walked with 02 2 leters desated in 2 min in the 80s .. I have not worked for almost 6 months I’m a nurse.My primary and pulmonary doctor does not want me around sick people. I’ve had echo done mild defects left ventricle enlargement .. also had vq test waiting on results. Next is cardio stress . I get anxious when I can not breathe . I don’t want people to think it is in my head .. I even told the surgeon back I have had blood clots before. It seemed they didn’t listen .. He did say I will not be able to go back to work. Due to my leg is numb and being on 02. Please keep me in prayer.
I also wonder will I be disabled .. from the pulmonary embolisms .I have worked as a nurse for 30 years. . Maybe I need to slow down and heal . Will this be for the rest of my life .. I still enjoy life as much as I can .. fish and garden walk with my 02. I’m so thankful I’m alive ..
I had a PE on December 13 and they discovered I have a condition called Factor V Leiden. I’m still struggling with low-grade fevers and terrible headaches. I’m going to see a Hemotologist to learn more about the condition and what I need to do re: blood thinners. I was told I needed to be on them for the rest of my life. I’m 40 years old, a mother of four and a Kindergarten teacher. Hang in there!! PE’s are really scary!
Sheryl, I had the same
Thing happen to me on Feb 6 2021. PEs on my lungs – dr discovered I have factor V Leiden also. I was told blood thinners for life. I am also a mom of four! I am still struggling with the anxiety . It’s nice to hear we are not alone
Thank you Sara for setting the site up. I was just diagnosed with DVT. No clot has broken off but the doctor said it was extremely risky because I had been doing skipping exercise while unknowingly having the condition. After I had extreme pain in my left leg. I had pain behind the knee and got checked about 6 or 7 months back. But the doctor never mentioned this possibility. Like others here I feel lucky but also more aware of how fragile life is. I’m 39 and keep really fit. But sometimes the biggest risks are invisible to the eye.
This is pretty scary stuff reading how it can take your life! Im fresh out the hospital ,in icu 5 days due to this..with thoughts of..”is this how im going out”? I feel like crap, fatigue n weak
Hello, my name is jim and was diagnosed with COPD until my leg started to swell up and thought it might be more than that so I went to the big hospital and they slapped me right in the hospital for 8 days, doctor told me I’m lucky I didn’t die, many medium size clots in me leg that traveled to my lungs ,I’m on blood thinners now, it’s been about 6 weeks now with 2 follow up, doctor said the clots are still in my legs but in 4 more months they will shoot me up with a med that is very bad for your kidneys to see if my clots in my lungs are melting from the C.T. ? I worry about every day because my daughter loves her daddy very much.
wow I just found this article and responses. I had a PE in 2016 and its all been downhill ever since. Awful to say but comforting others are experiencing this because I thought I was going crazy with all these symptoms. Every day is a gamble on feeling good. Pain, fatigue, weird feelings in my legs. overall cloud over my mind. Im living an awful life and I don’t know how to fix it.
That sounds exactly how I feel. My tiredness is ridiculous, I could easily sleep 17 hours a day. I’m finding it harder to explain how I feel because people think I’m fine now. I had a PE in April on my right lung x I never got told a recovery time from anyone. Feeling a little out at sea at the moment
Thanks for posting- I thought I was losing my mind- my dr told me 6 months and I am at that point. It easier for me to do stairs now- but I am still not right- I just do not feel right- I know my husband is frustrated because i am not able to keep a schedule and he thinks i am just not trying hard enough-or whatever..it is humiliating and I just happened to think tonight if anyone else has this problem..my clots were building for a longggg time and I had numerous and had lack of oxygen for a long time…and I did not realize all of the damage t can cause,.thank for not letting me think i am out of my miind
Thanks for writing up this article! I’m 25 years old and laying in a hospital bed after finally being diagnosed with PE after 8 months of searching for an answer to my breathing problems. It’s helpful to hear from other people who have experienced this before to understand what to expect and to read their stories and be able to relate to them! I can’t wait to be discharged and begin treatment at home so I can start exercising again. I plan to journal my recovery process so one day I can see how far I’ve come.
I had a PE that was brought on by a hernia surgery. My doctor said it was a provoked issue and that i will be fine. I was hospitalized for 4 days and at first could barley take a breath without hurting. It’s only been 2 weeks since I’ve been out of the hospital and i feel totally normal. I’ve been given lovenox to inject into my abdomen for a 3 month period. I believe that if you are not overweight and your PE was triggered by a surgery then you will be just fine after a few months.
I had a PE after shoulder surgery. I was a very strong hard working person who walked every day for 90 minutes. I am 6 weeks out and still don’t feel good. Chest pain extremely tired, feels like I have ice in my veins, I have always been a warm person. Cant walk more then 20 minutes before I have to sit and I am not over weight. So weather you are in shape are not your recovery is personal and depends on where how many how big your PE is. I was told it could be up to a year to recover. wish you the best.
My P.E. supposedly occurred from being provoked by surgery. Although my surgeon doesn’t agree with my PCP on this matter. I took every blood test they could think of… Everything is normal. Makes me think the surgeon could have prevented it since he was so ademebt the surgery did not provoke it. This happened a little over a year ago and I still do not feel back to normal. I am grateful for my health and I can function fine I just have varying degrees of chest discomfort. I am surprised you injected lovonox for 3 months! Maybe you were unable to take warfarin? Well I hope for the best for all of you and I can relate that doctors make you feel crazy! I decided to make an appointment with a naturopathic doctor and a psychotherapist because I need to ease my mind about my chest discomfort. I feel certain something happened to my heart from the P.E. but doctors don’t want to do further testing and tell me I am fine. May peace be with you all!
Hi Jessica, how are you feeling
now?
My PE was 3.5 months ago, and I still have terrible chest tightness/discomfort. What type of chest discomfort did/do you feel? What helped you come to peace with these feelings? It’s been very rough for me. I have a 5 year old and a 5 month old that I need to be there for, yet this constant tightness/feeling like I can’t breathe is debilitating.
I feel ya wasnt told much muself except every time im in extreme pain they say i should be fine i laugh wish for one second they could go threw what i am i have a pe in right lower lung killed 60 percent or more of the lung before i finally took myself to the hospital all most in cartiac arrest from not breath cause the pain and i was told i would be fine in 6 months but on certain days its like im going threw it all again but as they say i shouldnt be in pain no more or anything of this sort spent a week and a half in icu on november 17 i went in of 2015 so only a few moths out sorry for the long story just tired people dont understand i literally watched my life flash before me that night and still now……..
I just got out of the hospital after 5days,with PE it was really scary but now im recovering im on blood thinners.I want to know if having. Pain and numbness in right leg is normal,after having this or should i go see the doc right away
Hi Angelina! If your PE’s were due to a DVT in your leg then I would say yes that’s why you have the pain. I had a DVT in lower calf and it was still cramping for about a few weeks on and off. I hope this helps, but still call your doctor to let him or her know what your experiencing.
Hello I’m Lateefah I just turned 35 in July I was walking up my stairs when I got short of breath I was taken to er to find out I had a PE three clots in each lung they said I’m very blessed to be here I was also told I was pregnant so that to was a shock for me and my husband I was in ICU from the 14 to 19 I take injections twice a day not sure how long I been having anxiety attacks every since I’m a mother of 5 children and a wife. It’s very scary trying to go back to living a normal life I went in dollar store had anxiety attack in middle of store please pray for me and my family.
Hi Lateefah!
My prayers are out there for you! You sound like an amazing wife & mother. Your a Survivor!
Stay strong & positive you will over come this!
I’m the boyfriend other woman who is 49 years old he had ACL replacement surgery. a year later she suffered pulmonary embolism they released her from the hospital the next day she has a follow up with her primary her primary told her she was good to go back to work did not give her any information regarding how long her symptoms will last. a spot on your blog said 1 to 2 years how about 1 to 2 days.
I had a back operation in October 16 only to be rushed back into hospital with a blood clot in my right calf which had broken up and lodged in my lungs and around my heart I was put on rivaroxaban 20mg one a day my blood is like water and I have been having extremely heavy blood spasms every few weeks it is so bad I have to use giant pads and bed mats in my underwear I am also passing huge clots which frighten me I have never experienced anything like it its worse than child birth my gp has put me on norethisterone 5mg to stop the bleeding but it takes about a week to work as soon as I stop taking the norethisterone within a day or so the heavy bleeding is back with revengance I have sore skin from the blood thinner too but this bleeding is getting me down and making me depressed any advice or suggestions
Jackie, i had bleeding problems before my PE incident on November 2nd 2016 which landed me in the ICU.
To manage the bleeding, the doctor started me on Zoladex. Some big injection that i get after 12weeks and has really sorted the bleeding. Talk to your Gynae about it. Am really sorry about what you are going through!
I had a PE blood clot April 2018 and I still have rapid heart rate or palpitations symptom some days or good and some are not, I probably go to the Emergency room at least once a week but when they do blood work EKG, and CT chest scan every thing comes back normal. I have worn a heart monitor for 48 hours came back normal but tomorrow I will wear it again for two weeks. I just pray for healing day by day but I feel your pain.
I feel the same please explain if heart rate goes down gradually or not ? I feel anxious thank you
Thanks, I just go out of ER with second PE. Yes, 5 years later after coumadin clinic put me on Asprin therapy it happened again. Truth be, it probably happen months ago with a small syncope issue but who knows. Walked into ER and had bilateral PE in both lobes. Had only small shortness of breath when I walk. CT showed another story. I guess I could have died. They didnt keep me in hospital because my sat levels were in the low 90s. Yes, apparently I have a genetic predisposition to spontaneous clots. Talk about anxiety. I feel for all of you. I had no risk factors, worked out daily and ate fairly well except I love breweries. This is a scary blow and now I am researching g beyond belief. I have my friend who is my doctor so I have great support and an awesome family. Fight the fight, all. We only have a short time and I am thankful for each and every day. Thanks for this page.
i feel the same way; left wondering “what now”. the answer is, “no one has really told me anything.” and truthfully im scared to death. the anxiety, fear,etc has really flipped my world upside down. im terrified of even walking around outside, working in my flower beds etc. i can only hold out hope that things get better not nly for myself but for everyone else out there who is going thru this same ordeal. good luck and GOD bless all of you
I’m so sorry you’re feeling this way. I’m scared too. And then sometimes I am hopeful and try to be positive, but then the residual chest pains and shortness of breath start and I’m defeated and scared again. I am glad we have this blog to share with each other. I just found it. Hopefully it will help us all. Take care.
Hello to you,,,
I’m a female of 37 years old I had my first DVT in Juin 26th of 2020,,, it was a shock because I never expected that,,, what was the pain I was feeling is really horrible lower back pain on the right side right on top my butt,,, alot of doctors always told me it was through my weight and I needed to loose weight that the pain would pass… It never did and one day i was walking to go to work my right calf just gave up on me I couldn’t walk on it no more I ended up in the hospital and they discovered a 2cm blood cloth in my calf …. ended up having severe treatment of shots twice a day of Lovenox for 20 days and understand 20mg of Eliquis a day… eliquis was a 7 month treatment I couldn’t walk I was like paralyzed my body was terribly weak head spinning hard time to breath or even walk in the house… anyways after my 7 month treatment no more blood cloth I was happy went back to work and on March 39th 2021 my worst nightmare came back a second blood cloth same place this time bigger 4cm!!!!!! Went again on lovenox shots they are horrible !!! Painfull and Eliquis but this time it was worst 5 days in treatment I ended up doing a pulmonary embolism,,,, a piece of the cloth traveled to my lungs ,,,, I could breath my heart was racing to 130 bits and my blood pressure went straight down to 8. Hospital again and you know one thing the doctors don’t tell you are the sides effects of pulmonary embolism well it is the worst feeling you cannot do nothing paralyzed I was of tiredness of pain can’t eat you don’t have the strength to do nothing trying to walk is the feeling of you run a marathon you are out of breath so fast and sleepy your body just drops down and sleeps anywhere it’s the worst ever…
I need to quite my job because the job I have my body cannot do it no more no strength at all ….. I just which we could be more informed of how sides effects do and for how long …. my doctor said a 7 month treatment and after we will see but it is a punishment DVT and PE…
My mistake on March 30th 2021
I feel the same. I had a pulmonary embolism and dvt in my left leg back in July. It’s November and I’m completely miserable still. Breathing sucks!! And getting very depressed. I’m not old either,52.
I was sent out with no info at all after multiple blots clots in my lungs very stressed and my anxiety is
Really bad scared to be alone and every pain is a bad one in my mind !!! Help
Hi Carol. Thanks for stopping by. I am glad you are here. I completely understand what you are going through right now, and I am sorry you did not get more information from your doctors. That can make it even more difficult. Feel free to explore this site for some insights, connect with others in the comments and if you are on Facebook, check out these support groups – https://www.facebook.com/notes/blood-clot-recovery-network/blood-clot-facebook-support-groups/659814504045991. There are some really helpful individuals there who can help share what they have been through. You are most definitely not alone in this and what you are feeling is very normal!
That sounds exactly how I feel. My tiredness is ridiculous, I could easily sleep 17 hours a day. I’m finding it harder to explain how I feel because people think I’m fine now. I had a PE in April on my right lung x I never got told a recovery time from anyone. Feeling a little out at sea at the moment
Fatigue is very, very normal! I still struggle to function on eight hours of sleep and it has been two years since my PE. I was sleeping most of the day during the early months of my recovery. Your body has been through a very traumatic experience and sleeping is one of the best ways for it to heal. I can relate – it is not easy for others to understand this recovery. Warm thoughts to you as you recover. Take care.
To everyone out there with severe fatigue, I’m just curious how many have had a CBC test done to check your iron levels. Mine have been non existent since my horrifying experience with both lungs full of PE’s. They did ultrasound after ultrasound and could not identify where they came from. Meaning, they most likely formed in my heart. I thought the pain and shortness of breath was due to my Multiple Sclerosis. I finally went to the ER when I couldn’t inhale or exhale even the smallest bit of air, without excruciating pain. By then both lungs were full. I shouldn’t be alive.
Turns out I’ve tested positive for Lupus. What’s one more diagnosis? It’s just money? Omg! Could my life get anymore hectic? NO! Don’t answer that! this all happened to me on January the 8th, just over 3 months ago. I had an allergic reaction to warfarin (misery!) so I am on Xarelto every day for the rest of my life.
I’ll be having a uterine ablation sometime end of May. My pulmo has agreed that will be an acceptable time frame to stop the Xarelto for 24 hours for the procedure.
Since the clots, I’ve had several iron infusions and will possibly need a blood transfusion after we do more labs on the 15th.
What makes me most depressed is I have my oldest daughter and her husband graduating from University on April 8th. This Friday, I am in tears and beyond depressed I won’t be able to attend as its 1,500 miles away from where I live. I never in a million years thought I’d have to miss her graduation!! Such a HUGE moment in her life and I can’t be there. The dr’s say I shouldn’t fly. What are the risks in all reality if I fly on Xarelto?
I’m so sad. I just want someone to say yes, you can go to your daughters graduation.
hello Kim, how are you feeling now? My PEs were thought to have been happening over weeks, but was admitted to hospital 10 days ago. I take warfarin 5mg. I’m so very tired though, physically and mentally. I feel like doing things but then feel really tired and totally exasperated. I know I cannot expect to feel like doing a lot in the first few months, but how long was it before you saw an improvement? I look upon this as an inconvenience……I want to live my life again. I drove my car for two miles this morning, but felt mentally tired. Iris
Ahhh, what a blessing it is to have found this site yesterday and to see so many who are struggling with the same things I have been for a year now, only I was never told that any of this would happen. The fatigue, the anxiety, the fear. I am 46, had my PE 3 days after a torn ACL knee surgery on April 3 of 2015. So, it’s been just over a year for me. I am on 7 mg of Warfarin (well, was knocked down to 6 mg two days ago, because dr. office called and said blood was “too thin” last week…have to go back today for another draw) For MONTHS, I literally had NO energy. I felt awful, tired, often dizzy and noone told me that would happen. I think people thought I was just being plain lazy. To even put on make up would exhaust me, and I was fairly active before the surgery. The fear of another PE happening is a daily struggle. I wonder if that ever ends. As you may have seen my post down further, since being on Warfarin, I have had periods straight from where the sun don’t shine that lasts from 2-4 weeks. As a result of so much blood loss, I had to have IV Iron treatments for 6 mos. At the end of my treatments, I had never felt as good as I felt then, but it only lasted a few weeks. Both my hematologist and my gyn has recommended a hysterectomy but fear of another PE made me back out. Now, the gyn wants to do an edometrial ablation and a d&c on May 3. I’m suppose to go for my pre op blood work today. I am so scared, I really want to back out again. I know God does not give us a spirit of fear, that comes from satan and I know that God has a time appointed for us to leave this world and for the most part I have no fear of death…as long as I’m like 90-something and in good health. Right now, I have 4 kids between 25 and 11 and two grand babies 4 and 2 that need me and I want to be here for them and see my great great grandbabies grow up. I may be selfish in that way. At any rate, I still have a few hours to make up my mind or not. Decisions Decisions.
Char, I’m so sorry that you will have to miss the graduation. I can’t imagine how painful that must be. May God bless and comfort you. I know your daughter will understand.
Hello my name is Suzana. I was diagnosedwith an Acute PE exactly one month ago. It’s been the first 3 days since that I have functioned quite well. Before that I had a swollen throat, swollen Thyroid and sore throat and exhaustion which collectively was making me feel anxious as I couldn’t breathe properly. I went to my GP and was sent for a Thyroid ultrasound. Turns out it’s just another side effect from the nuclear scan and all part of the untold recovery. I was told since I was in previous excellent health (Ballet Dancer) and fit, non smoker, have no risk factors, that I’ll be fine very soon. Once home after a week in hospital, and not feeling fine…I made about 5 trips to my GP to discuss the new chest/hip/leg pains, exhaustion and throat issues. It was in trying to find answers from like patients that I found this page. Thank you for sharing your stories! I have come to accept that the recovery process is a day by day journey. One day I host a party, the next I’m totally exhausted then the next I feel OK. A big part of recovery is the mental adjustment. It’s trial and error each day. Today I may feel up to going for a walk and the next I try and have to turn back. The other hard thing is the adjustment for our families. I look fine-did when I was in emergency. People forget what you are going through. Anyhow…just wanted to say thank you and I wish you all a smooth and speedy recovery x
My dr wants me to have a follow up CT scan …its been almost a year since my PE and i take warfarin 5 mg daily …i feel ok although i still have depression/ anxiety associated with the PE and my stamina is low ….i just dont want to have the scan done ….does it really serve any purpose? I’ve read that scans can show minute clots that wouldnt be seen under normal circumstances that drs treat unneccesarily …maybe I’m just burying my head in the sand and just don’t want to know …..my dr has already told me I’m probably going to have to stay on warfarin anyway because i have had other suspected clots since i was a kid so why get the scan? Maybe I’m just afraid of what it might show and with anxiety issues I’m just afraid to have the test done?
Thinking of you, Kathi! I personally would want to know, but I understand your hesitation. I hope you are feeling well and able to do what is right for you.
Hi Suzana! Welcome to BCRN and thank you for sharing your story with us. I also struggle with Thyroid issues (I have had them all my life, even before my PE) and I often wonder how much my thyroid condition (being autoimmune) has played into my DVT and PE. Thank you for telling us about that as I find it helpful. I am still receiving care for my thyroid although it did not get the care it should have when my PE first happened because everyone was more concerned about that.
I am so glad you are here and you are right, often times our friends and family and those closes to us do not realize what we are going through or how long of a recovery period this is. Every time someone shares some bit of information on this site, I hope it can help someone else. Thank you for being a part of that and keep in touch!
Hi yes and thank you all for sharing! I find everything that everyone has shared helpful and a reminder that I need to be patient as the journey travels.
I will be having my 2nd nuclear scan to see how the clots are-changed or unchanged. Just hoping /praying I don’t get worse thyroiditis on top of the inflammation I already have from last time. A friend of mine is an occupational therapist/another is a rehab physio and just spoke. My doctor and friends mentioned Government funded rehabilitation fitness building programs. I live in AUS and will be looking into it this week. Will let you know what I learn about this. I am a former dancer and Pilates instructor but feel I need specific info on rehab for when the lungs aren’t functioning as they should. It’s as if I need to reset my thinking in terms of exercise and how I would approach strength and fitness building. Will share specific info once I get it.
All the best everyone x
Suzana,
How your lungs react will be much different then the rest of us. I am 3 months and 3 weeks from being admitted into the hospital. I had bi lateral PE and the lower lobes of each of my lungs were severally clotted. I tried going back to exercising in early January only to experience coughing up low levels of blood. I had to stop exercising for another three weeks and just got back into it two weeks ago. What a difference, I feel better and can work much harder then I thought I would be able too. I do suffer the pain and side effects of pulmonary hypertension, basically unequal pressure in the lungs caused by the damage from the clots to the arteries. The extent of PH differs between all of us who have PE and can be a big factor in how fast we recover. My doc feels it will take me one year plus to get back to 90% of where I was before the clots got into my lungs. He does not feel I will ever get back to 100%.
My one piece of advice, don’t push in the first few months. Pushing to hard can cause even further damage which will just delay your recovery. I was a competitive cyclist and it is my nature to push. The PE’s let me know who was the boss early on and I quickly took a lets go at this slow mentality. Take each little step forward as a reason to celebrate and when you get frustrated, as we all have, we are here to listen.
How are you now Tim? I was admitted to hospital 11 days ago, and I still feel so weak and frustrated……I want to be able to do normal ordinary things again, like a five min walk to the shop without feeling exhausted. I’m looking for some reassurance that I may START to feel better soon. I drove my car 2 miles today…..my brain was too tired. Iris
Hi Tim,
I am Pat i am a triathlete got bi-lateral PE 3 month ago. I am finding it very difficult to cope with, not been able to train or compete can’t do any moderate intensity exercise with out getting pain in my lungs.
How are you now Tim, are you able to compete or train hard, how long did it take you to get back in action and to you have to take blood thinners.
Sorry for all the questions.
Kind regards
My doc offered cardiac rehab which I am going to take her up on. The plan is for them to help me make a plan for increasing endurance and strength and respiratory training. Had bilateral submissive PE January 12,2016
Hi Tim, thank you for your message! I wish you well on your road to recovery! 3 months in and hearing that you feel better gives me hope. The days drag on sometimes when you want to get out there but can’t. Will do as you have all sugested-take it slow.
Thank you and all the best 🙂
When i had my PE the only symptom i had was chest pain …. other thsn that i didnt know anything was wrong with me ….right now I’m having pain ikn my lower back/hip/groin area to the point I’m having trouble climbing stair and I’m on the verge of a panic attack thinking it might be a blood clot …..would that be an area where a blood clot could form? I don’t want to be a baby about this but pain scares me since it was the only symptom i had in the past…
Yes, Kathi! A clot could be in the groin area. It might be worth having it checked out and if the pain is worse or you are having trouble walking, please go to the ER. I would rather be safe than sorry – I know that sounds cliche, but it is the truth in our case! Best to you.
I experienced by own bout with PE February 4th, on the tail end of the first snow storm that hit Georgia in January. Ultimately, I was forced to walk 4 miles after stranding my car. My hope was to find a police cruiser to avoid the full 11 mile trek. I was lucky enough to get the escort home. The next few days my left leg hurt but I just though I pulled a muscle whenit started to burn I had a passing thought “I hope it’s not a blood clot”. Not wanting to be a worry wort I took Tylenol and Ibuprofen. I also ignored they symptoms of lethargy I felt at walking up the stairs in my home. On Feb 4th my body stopped allowing me to ignore what was going on. I was home alone, after calling out from work and I passed out three times at home. In the end I woke up long enough to call EMS. At the hospital I had an O2 saturation of 72 and was considered tachy cardia. After a series of tests and scans they discovered the clots in both lungs which caused a pulmonary embolism. My left leg was painfully swollen with clots. I was treated with warafin and lovenox (heparin). My hospital stay was only 3 days and I followed the regimen prescribed which brought my INR up to a level 3 which was optimal, but my leg was still painfully swollen, often waking me up at night and leaving me in tears. At this point they’d taken me off the lovenox. I saw my GP who prescribed steroids an a pain killer. I ended up back in urgent care and their tests showed that new clots had formed but they couldn’t explain why. They took me off the warafin and put me back on lovenox which I currently have a month supply for. I was told a hematologist would be in contact with me but I feel like I’m just left out there. I didn’t fall into the typical criterion for predisposition: I’m 40 but I don’t drink, ever, or smoke. While I don’t have a regular exercise routine anymore I’m hardly sedentary, in fact I’m always on the move (with 3 active teenagers). I feel like I don’t have any real answers. In urgent care they wanted me to follow-up with my GP but in my follow up after my hospital stay she seemed to pay little attention to the DVT and PE and more focused on my diabetes which is being managed successfully. I keep hearing I’m lucky to be alive but not hearing much on how long treatment should be, what to expect etc. In reading this blog I realize I should contact the doctor about the tingling and mild numbness in my left foot. I wanted to wait to see if the lovenox would help with that like it has with the swelling (and subsequently the pain). I think like I’m on the road to recovery but every few days feel like I have to give my leg and body a break because it starts to “flare” up. Once a week it’s like I’m calling out of work which is just as frustrating to me as it is to my employer. I feel lost, and alone and know that my job will be in jeopardy if I continue with this pattern but don’t know what else to do.
Hi Nia! Thank you so much for being here and for sharing your story. First, I am so glad you are here after that storm and you made it home. Wow!
I understand your frustrations completely and I think you sum up what a lot of people here felt and still do! Let me assure you, you are most definitely not alone. I think you are right in deciding to be more persistent with your medical staff and let them know about your foot as well as what you are still experiencing. I don’t think there are any easy solutions to what we have all been through, as I am sure you would agree.
I do know, I tried to go back to work after one month of being off work and while I thought I was ready then, I wasn’t and not to scare you, but I ended up losing my job after three months. At the time, I was devastated and did not know what I was going to do, but looking back, it was the only way I was ever going to heal. I also think it depends on what you do and how flexible your employer can be with your work. Do you have the ability to apply for short-term leave? That is what someone else suggest here once. I could not, but others have. I will be thinking of you in this respect, I know how you feel and I understand your concern because it happened to me! Employers do not understand this and even if they do, it is a complicated and scary situation to be in.
I think going with a hematologist is also a good route so maybe he or she can find the root reason of your clots – like if you were to have a clotting disorder, which might explain the clots. Definitely see a hematologist. I hope they get in touch with you or you can get in touch with them.
I do know recovery and the pain gets better with time, but it is a long road, yes. I’ll be thinking of you and please keep in touch!
I am a 21-year-old female that had just started taking Ortho-Tricyclen Lo birth control pills that I got from a free clinic. I have never had a sip of alcohol or ever smoked, no drugs, and have pretty much been healthy as a horse my whole life (besides my allergies in spring-time and asthma when I was younger). On April 3rd, I felt a little tightness in my chest, like it was hard to get a full, deep breathe of air. It was a little painful, but it lasted for maybe 2 hours and then went away, so I thought nothing of it. The next day, I felt fine, but then my symptoms returned, and got even worse. I called my father and he took me to urgent care, where they did a little breathe test, an EKG, and a chest x-ray, to which they saw absolutely nothing wrong, but suspected that a blood clot could have been in my lung and that a trip to the ER would be the only way to be 100% sure. So after a bit of discussing with my father, we went to the ER. They did the EKG (once again, normal), a blood test and it came back positive, so they issued me a CT-scan. Sure enough, they found two small blood clots, one in each lung. I was prescribed Lovenox injections and Warfarin, and stopped the Lovenox on the 11th once my INR was in the 2-3 range. I’m now just in the phase of adjusting my Warfarin to keep my INR in the correct range, and I know that I’m safe and getting better, but this entire ordeal really messed with my head. The tightness in my chest went away more and more as the days passed, but now the shortness of breathe has sort of come back, and it’s making me paranoid. I got so worried about it that I actually went back to the ER and got checked just in case, but they said that I was alright and that it was all a part of the recovery process…
I know I’m only 10 days into my recovery, but I’m so paranoid and anxious and get panic attacks. I can’t be left alone, and I’m even sleeping out in the living room with one of my parents each night just because I’m terrified of being in my own bedroom. Is there any saying when my breathing will be back to normal? Or at least where the shortness of breathe gets better? Because it just sort of came back yesterday afternoon after I had started to feel really good over the week, sorta put a bummer in everything and I’ll probably have to miss out on another week of school and work because of it. If anyone has any tips or tricks or advice, it would be greatly appreciated… it’s a scary ordeal. I know to take it slow but… it’s just so difficult trying to get my mind to shut up…
Also forgot to say that I had only been taking the birth control pills for 19 days when all of this happened, and that my doctor(s) said that because of my good health (practically perfect vitals every time they checked on me, whether it was my blood pressure, temperature, heart rate, oxygen saturation, and anything else), and because it was so soon after those pills, my PE was most likely due to my BCP. It was advised, and as a huge and major DUH that I have discontinued taking the pills.
Just as another note, I started off on 5mg of Warfarin. My primary care doctor bumped my dosage to 7.5mg to get my INR in the 2-3 range, and now it’s being regulated as I get my checkups from 5mg to 7.5mg, and he doesn’t suspect that I will have to be on it for longer than 3 months, but that it could take up to 6 months for me to get off of the blood thinners all together.
Hi Stephanie Rose (such a pretty name) and welcome to BCRN! I am so glad you are here and sharing your story with all of us.
What you are feeling right now is very normal, I assure you and I know exactly how you are feeling right about now. It is a hard and lonely place to be in, but I assure you, you are not alone because we have been there too! I was very much afraid to be alone after me PE and after I was discharged from the hospital and you are right, it does mess with your head. I became afraid that something would happen to me while my husband was at work and no one would be able to help me because I could not get to the phone in time. I spent the days and nights awake, worrying, in the beginning so you are not alone in that. This is a very traumatic experience – that many, sadly, do not survive – and that really does mess with your head.
From what I know, the shortness of breath and pain you are feeling now is all still very normal. I will say, I did not start to NOTICE feeling any better or having less pain until about 3 months into my recovery. From there, things did get better little by little. One day I didn’t necessarily notice that I wasn’t in pain anymore, I just noticed that I hadn’t felt that pain as much as I thought. Or, I could walk up the stairs a little easier or take a shower without getting out of breath. As I look back on those days from where I am now (almost two years out) it is amazing how much better I feel now. The progress is slow in many cases, but it does happen. Being young and it otherwise good health, I think it will also help you.
Did they also check you for clotting disorders? I only ask because I was on birth control and they originally blamed my clot on that. I was 29. I am 31 now. A hematologist that was called in found I actually had a clotting disorder as well, which combined with the birth control, contributed to my clot. Just a though, if you can get further testing do.
I am really grateful you shared your story. There are many younger people here who are going through this. It is so important that people of all ages share their stories.
Thank you so much and please keep in touch. Thinking of you as you recover!
Hi, my name is Char, I was diagnosed with PE on December 24th of 2022. I was having what I thought was really bad gas in my chest, but I noticed that when I laughed, it hurt. I decided to go to the ER and was told I was having symptoms of a PE. The doctor also told me that if I did have one, they more than likely would be small because my oxygen was at 100%. After the blood work came back, it showed it was a possibility. They ran a CT on me and confirmed I have small clots in both lungs. I also had pneumonia. I was in really bad pain, and I could barely walk for like a week. After the pneumonia cleared up, I was able to stand up straight again. After 2 weeks, I went back to the ER because my chest and left side started to hurt again. They did all the blood work and the CT again. I was told that my blood work was good and that the blood clots had dissolved. My primary doctor referred to Pulmonary Medicine, where I was told I had to stay on blood thinners for 6 months since my blood clot seemed to be unprovoked. I told him I burned my arm really bad, and after that, I started to feel sick. A couple of weeks later, I was in the ER being diagnosed with PE. They did not take me seriously because they said it couldn’t be proven that it came from my arm even though it was a possibility. I had many genetic tests done on me, and all came back negative. I was told that after I stop the blood thinners (Eliquis), they want to do more testing. I have been feeling pretty good overall. The only time I have discomfort and when I walk too much or try to lift heavy things. My side hurts for a few days, and I am back feeling better. I have been dealing with what I suspect is sciatica pain in my right leg. I have been dealing with that before the PE, but it has gotten worse. I plan to see my doctor, and hopefully, something can be done about it. I am just keeping my faith in God. I believe I survived this for a reason, and God has something better for me. It is easy for us to have anxiety, but we have to think about the reason why we are still here. I am a mother of 3, and I fight every day to smile. I am doing everything in my power to live my life happy. God bless you all. Live, love, and be thankful
No I haven’t been checked for clotting disorders, but my primary care doctor did say that would be the only way to check for sure. I have another appointment with him tomorrow morning to check my INR, I’ll make sure to ask him about it. Thanks!
Hello Stephanie Rose, you are definitely not alone in this. It’s been a frustrating and confusing road for me also. I am now 4 months into my recovery and all I can say is, that it’s been a rollercoaster ride. One day I’m feeling well and the next I’m exhausted. I’ve tracked my health closely and found patterns. When I do feel well I tend to return to normal activity and obviously over do it…then I crash and need lots of sleep to recover. I found my shortness of breath would return and panic once the exhaustion set in. So my advice is take it slow, baby steps in exercise or even just trying to get out and about in short bursts only. Lots of rest and keep your doctor informed about any changes. I felt a sudden return of chest pain and exhaustion a few weeks ago and then my shortness of breath returned along with heart palpitations. I was referred to a respiratory specialist-thinking I had some lung damage….turns out my GP ordered another full blood work up and in only a few weeks since my last blood test, I had become anemic.My Iron dropped to 13 (normal range being 50, and my hemoglobin dropped to 115, normal 150). My GP said the patients usually become symptomatic around the h-90 mark, which explained all my symptoms. I honestly thought it was PE related, but it isn’t directly…rather related to the medication Xarelto (the new drug) causing longer bleeding. I haven’t noticed anyone on here stating that they are taking Xarelto. Is anyone taking it? It’s the new highly recommended one here in Australia. I’m curious to know if anyone else is on it. I’ve had no other problems with it and it requires no monitoring or regulation. Only downside is, that there is no reversal drug like there is for Warfrin. I hope you don’t mind me going off on a tagent..
Stephanie I wish you all the best in your recovery. There will be good days, great days even but it takes time..you are still in early recovery as are many of us on here. My doctor gave me some advice…take each day one at a time. Listen to your body, do a lot of self positive talk, encouragement and set little goals each day until you feel you can add more and more on your schedule. Rest each day and when you are feeling anxious, have a plan to calm you and distract you. For me it’s reading to sleep and during the day it’s making a cup of decaffeinated tea (can’t have caffine) and putting on a favourite tv show or movie or going to sit outside in the sun, listening to music etc…..or arranging a catch up with a friend. I hope you can find something helpful for yourself. The anxiousness settles especially when you begin to feel better. All the best to you and everyone reading x
I have learned the baby steps thing all too well today, unfortunately. My mind said that I could return to school, if not just for a little while until I went back home. Even being out of the house and around other people was just so mentally and physically draining. I developed a massive headache (due to the loud room I was in, what a great idea…) that I’m now just suffering through because I keep getting mixed signals about which OTC pain killers to take. Doctor said Advil, someone on another forum said Tylenol. I’ll probably end up calling my pharmacist tomorrow. There’s absolutely no way that I can make it back to school this week, because I am absolutely drained after only a few hours, I can’t imagine two more days of this feeling. I just need to relax at home. Whatever my mind says, I need to listen to my body. It will tell me when it’s ready.
Hi Stephanie Rose. Thanks for stopping back in, and I am sorry to hear your return to school did not go very well. I hope you are feeling better now. I will keep you in my thoughts. Be sure to check out this post for some info about what you can take when taking blood thinners: http://bloodclotrecovery.net/what-to-take-when-taking-blood-thinners/
Generally people only take Tylenol, but you are right to check with your doctor/pharmacist to be sure.
You are VERY right about listening to your body. Hang in there, and we’re all here for you!
I just wanted to say that is some great advice, Suzana! Thank you.
Suzana, you give me hope when you say you felt much better after 3 months. I was taken to hospital 11 days ago, with bilateral PEs, returned home on day 6. I still feel very tired and low, frustrated that I cannot get on with my life. I drove my car for 2 miles this morning. I managed ok but felt like my brain was too tired. So I came home for a good cry. All I’m managing is my own personal care, limited cooking, washing up and kitchen rubbish to bins, laundry when I’m running out of knickers to wear. I realise that recovery will be slow at first, but I’m impatient, and very sad
I hope your appointment went well and you can find some answers!
Hello just a follow up on things that have helped ease my mind…especially when alone..amd feeling unwell was
1. Buying an oximetre monitor.
it monitors your heart rate and oxygen saturation which is the same peg monitor that you have on your finger in hospital.
my GP suggested buying one when I was struggling with shortness of breath at home. It has been good for him to see when my oxygen levels drop. I only used it for a few weeks and honestly it was for mental clarity. I was surprised to see that even though I thought I wasn’t breathing well that I had excellent oxygen levels. I stopped using it now so as not to become fixated on it.
just a thought.. x
Thanks so much for sharing these things, Suzana!
It has now been 3 months since my diagnosis. I probably had the small pe’s going around my body since October though as this is when the symptoms started. How lucky am I to be here!! I have had so many tests and still have a few to go – but we may be making progress. I am convinced something is not quite right. I have had various episodes of breathing difficulties and chest pain since 2003, but after visiting or being taken by ambulance to hospital a few times – nothing has been found and it was just put down to a virus. I’ve also had a spinal fusion and a hysterectomy so all of this has been thrown into the equation ! I went to see a spinal surgeon a month ago and the MRI looked good but he referred me to a neurologist who I saw yesterday and he just wants one more MRI to check for any small cysts on my spine! I’m sure there isn’t but I will humour his curiousity. I am starting to feel much stronger and am back at work full time – but I still have a constant cough and have chest pain and breathing difficulty on exercise – even just walking around a lot – with occasional dizziness. My GP has referred me to a cardiologist and my appt is on 28 April. I have had a echocardiogram 3 days before my PE was diagnosed by VQ scan. My respiratory consultant assured me it was fine BUT he received a letter from my GP this week informing him I have been referred to his colleague – the cardiologist. He then rang me last night – quite late – to say that he was aware who I was seeing next and that I was not to be surprised that it will come up that I have a small hole somewhere in my heart (can’t remember where he said) and that I had widening of the aortic valve. I have never been told this by him before – all was okay was all I’d been told ! He said a pe can cause this and the chest pain etc may be because of this – but also this could possibly have caused the pe. I am interested to see what the cardiologist says now. If all is okay – I will have to accept that all of my smptoms are post PE and will improve in time. The recovery is ongoing and I know still early days but soooo frustrating – I am impatient and just want to get back to normal!!!
Hi Nicola! It is great to hear from you and thank you for sharing all of this with us. You raise some very interesting aspects and effects of a PE that I was not aware of nor had I considered before you brought them up. I am also interested in what the cardiologist had to say about the hole in your being a result of or the cause of the PE. If you get a chance, do drop back in and let us know. \
I am glad to hear you are back to work full-time and starting to feel better. I think the parts of recovery you describe about still feeling pains and shortness of breath after exercise are all a normal part of recovery. At least it was for me and several others here. Thank you for also sharing how you have become an advocate for your health by continuing to search for answers. That is so important because sometimes we are the only advocate for ourselves.
I hope you are doing well and talk to you soon!
Just wanted to provide an update since it’s been a little while:
I went back to school week three post-PE, and week four I started work again (only for 30-45 minutes though since I can’t handle both work and school just yet). About to start week 5 tomorrow. I have had a little bit of a relapse in my recovery: we have had terrible weather lately (high winds and hot temperatures) that have aggravated my allergies to no end. I woke up with the initial allergy symptoms on Thursday, but also had another INR check that morning. Turns out that after two weeks since my last checkup, my INR dropped from a 2.5 to a 1.3 – more activity, less sleep, more food all contributed to the drop. Not going to do a two week break again for a while until I know I am stabilized. I go back in on Wednesday for my next checkup, so hopefully it has gone back up with my double dosage.
Well I went back this morning and it only went up to 1.5, so it still went up but not by as much as we had hoped. So he bumped up my dosage yet again to 7.5mg a day. My next appointment is on Tuesday next week, but I’m still feeling like he’ll have to up the dosage yet again to get me to stay between 2-3.
I can relate to you! I had a very hard time stabilizing my INR on warfarin. I was able to after about a year total and taking a doctor-prescribed vitamin K supplement was the one thing that worked for me. It balanced my system and now I go about 5-6 weeks between draws. Discussing alternatives to your treatment, including other medications may be something to bring up if you continue to struggle. I will also say it can take a long time to regulate on warfarin and that is a normal thing. Thinking of you!
Stephanie Rose
Just read ur post. I also had the problem of my inr dropping. I’m my case I developed a new clot. A word of advice I was told if my inr fell below 2 to see doc once a week n just for protection to use Lovenox to keep blood thin so there will not be a new clot. I had my 2nd PE n my inr was not manage right n then months later had another. I feel if I would have known to take to weekly reads n Lovenox until back in target rage I would have been protected from my recent one. Everybody’s different u may want to ask about this it’s better to be safe then sorry.
Hi Stephanie Rose! Thanks for letting us know how you are. I went back to work (full-time) about a month post-PE and I could not do it. I think what you are experiencing is very normal and it does get better with time, although it does not feel like it and it seems like it does take forever.
I hope your check-up went well. I have found that it seems like nearly anything can effect your INR so changing your sleeping and work/school habits may have affected you. As you know, diet, stress and hydration can change it too.
I am thinking of you and hoping you continue on the path to recovery and start to feel better very soon. Hang in there, we are right there with you!
Thanks for the kind words, it helps a little bit. 🙂 It’s just so difficult to not worry about every single thing that happens to my body… like right now it feels like my throat is swollen. I can take deep breaths and it doesn’t hurt, and I can sort of breathe through my nose, but it doesn’t feel like I’m getting enough oxygen. I’m hoping it’s just my head playing tricks on me, as my anxiety is pretty awful right now.
I was just at the doctor and told her I just had problems breathing and I was so tired. I thought It was from my fibro. Come to find out I have two blood clots in my leg and 10 in my lungs! All from hurting my back in may. (Bulged disk and injured my psiatic nerve.) Got two iepidural injections 2 weeks after. My leg started hurting really bad and just could not breathe. I have no history in my family of clots. They are running blood tests to see whats going on. I just feel like I am never going to get better. 1 to 2 years recovery time? I just feel useless.
Hi Rhonda and welcome! Ten blood clots in your lungs?! WOW! I am so glad you got help and are here to talk about it. How scary!
Please do not for one second think you are useless. You are not and that is why we have this community here – because you are also not alone! Recovery is long, yes, but it is also different for everyone and while I may take two years to recover, you may take less or someone else may take more. You are also recovering from an injury at this point, which changes the dynamic. You may find once you heal from that, you also recover at a quicker speed from the PE. It all depends. Please do not give up. This is a guideline because so many people are not told what to expect and do not think it will take long. It can, it may. It is something to be aware of.
I am wishing you well and also that you find answers, which may help your feelings of uselessness. Take care and keep in touch!
Hi Sara, when you say it could take two years to get better, surely you mean getting back to the fitness pre PEs? I know it’s early dates for me Sara, but how long could it take for me to start noticing improvements? I’m exasperated.
Hello Rhonda. Sorry to hear you haven’t been well! You are definitely not alone and definitely not useless!! You must listen to your body and rest. I had my bilateral PE in January and began recovering fairly well around March. I began to walk without much pain or breathlessness. What I have found though, is thst any respiratory illness does knock you about much more and takes longer to recover from. I’m constantly going for chest xrays and blood tests to check that the lungs are ok-no pneumonia, collapsed lung or infected block pockets in the lungs. Last yests showed that all looked great internally. My specialist ENT said that the anxiety or hypersensitivity is temporary and as you regain fitness and the lungs have had adaquate time to heal, that you should feel much much better. I wish you a smooth recovery. Take care.
Good news Suzana, though I’m 68, but fairly fit
Hi Suzana,
Would you please share how collapsed
lung and infected pockets are diagnosed?
Thanks!
Stephanie Rose, regarding your post about the sensation of not being able to breathe properly and feeling like your throat is swollen…I thought I may mention the following. I firstly had chest xray, blood tests, thyroid and throat ultrasound, anacid medication, antibiotics and after all came back clear…was referred to a respiratory specialist and then an ENT. The radiologist who has done all my VQ scans in hospital said that there are no side affects. The GP said there may be a side affect to the contrast dye. The ENT finally confirmed my thought. About a week after each VQ scan test I began to feel a swelling, tighness in the chest and anxiety coming on. It would go on and off for weeks. He confirmed that I was having a mild allergic reaction to the contrast dye. I almost passed out from anxiety when he performed a test with the camera going down my nose and throat using a local anesthetic spray. That feeling tripled. To my surprise, I saw on the screen that my airways were open, clear and healthy. He said it’s quite common and other doctors are beginning to learn of this too. He said that some patients have an instant severe reaction but it is very rare. The theory is that because the symptoms are the same as having a PE, it is difficult to distinguish the difference betwen the two causes.
I don’t know if that helps or if it’s even something you are still struggling with? I hope you are feeling much better these days! Question for everyone living outside of Australia…is anyone taking the new Rivaroxaban drug Xarelto? I am and it’s fast becoming the choice over warfrin because diet doesn’t affect its effectiveness and the dosage is always the same. Alcohol and anti inflammatories do affect it though. Just curious about the different medications.
This is so good to hear these things. I am actually released in to hear these stories. My story started out on June 10th with a superficial clot in my upper left leg above my knee running towards my thigh that was extremely painful. I went to urgent care to get it check out and was sent n my way being told it’s only superficial and to take anti inflammatories and use a warm compress. About a week and half later it wasn’t any better but worse with redness traveling up my thigh so on June 23rd I came home from work in so much pain I was in tears. So my husband took me to the ER at the advice of our neighbour who is an RN to get answers. An ultrasound found the DVT and the tech asked if I was short or breath and I was but I thought it was anxiety from the pain so they did a CT of the chest with contrast and found the PE in my left lung. It’s been almost 4 weeks so I thought I should be feeling better because my inr is leveling out. I did start the first week with Lorenzo injections and warfarin I was able to go home right away. But I still feel tired, chest pain, and short of breath alot. My blood pressure is higher lately too. I’m usually very active so this is driving me crazy. I feel I’m being a whiner.
Hello Amy and welcome! We are glad to have you here. Thank you for sharing your story!! Oh my gosh, I cannot believe what you were told at the Urgent Care – how scary! I am so glad you went to the ER and took your health into your own hands. That is so, so scary that the Urgent Care just assumed it was superficial and did not even send you to the ER for follow-up. It is also very important to share for others who may be in the same situation – thank you.
You are not being a whiner whatsoever. I remember where I was at four weeks into my recovery, and I could not do much of anything, but lay on the couch. I could not even breathe on my own because I was on oxygen.
There are many people here to help and share experiences with so I hope you will not be a stranger. Again, welcome and thank you for sharing your story!
What is this INR you refer to? What does it measure? What are normal levels? Thanks.
Hi!
Feeling really exhausted, was looking at going back to work in September, feel now this could be some time away.
I was rushed into hospital after I collapsed and found out I had massive PE’s on both lungs.
I feel constantly in pain, admittedly not in as much pain as during my week in ICU. I am also so exhausted and feel frightend all the time. Any little bit of exercise makes my body so out of breath.
Can somebody please tell me when my life will feel normal again. This happend to me on the 2nd July 2014
Thank you
Hello Dawn. How are you are you feeling? I hope okay this evening. Thanks for the update.
I know exactly where you are and at 2 months, it was still very, very hard. Everything hurt and I thought my life would never, ever get any better. I would say I started to see improvement in how I was feeling and normal activities that I was able to do at about 6 months. Keeping in mind everyone is different and we all recover at different rates. I felt even better at a year (http://bloodclotrecovery.net/one-year-after-my-pulmonary-embolism/) and consider myself almost fully physically recovered (or as recovered as I will be!) now at two years. It is a long, long process, but you will start to see small improvements that will accumulate and then turn into bigger, more permanent improvements.
You are not alone in your feelings. I remember them and I will never forget. Thinking of you this evening. Keep in touch!
Hi.
Delighted I found this site. I had a bi lateral PE July, 2014. I am so down that I’m still exhausted, short of breath, sweating, having panic attacks, palpitations etc now.
The doctors scratch their heads and know nothing. I can’t work. Even going to see the doctor leaves me exhausted. I’m 52 and a former athlete, now I’m just a nuisance to everyone.
I’m wondering do I have pulmonary hypertension?
I don’t understand why doctors don’t know more about PE’s and advise you about recorvery. Sorry about my rant.
I am so glad someone else is exhausted, sweaty and has a pounding heart after little exertion. I had a dvt that became pe’s in all 5 lobes of my lungs after an ankle injury in october. It’s now January and im still exhausted…especially sweaty….and can only do few things around the house before I’m out of breath. I’m expected to go back to work (preschool teacher) next week, but I can barely stay moving for more than 2 hours at a time. I’m on workers comp and they don’t understand how long it can take to get over a pe. This is frustrating and anxiety inducing. How do you get professional’s and family understand that you just aren’t better yet? I feel like I’m letting everyone down.
You aren’t letting anyone down…yourself take care of yourself first and foremost. Your GP will understand. Your body and your life is YOURS and nobody else’s…you will know when you are fit
hi read all these blogs and oh my how i can relate to a lot of them , i was diagnosed with a p/e on 20 june this year ,, and i am feeling much better but eh ho its a slow process and when you think i feel fit to go back to work ,, bang back comes the breathlessness and exhaustion ,, just hope as time goes by that it goes completelty
Thank you for sharing, Lesley and welcome! You are right, this is a long process with many twists and turns, ups and downs, good days and bad. Thank you for validating what I know many others here are feeling. Take care and I am wishing you well in your recovery.
Hello everyone. I was wondering if I can get some serious input from you guys on here. It has been two years since I suffered a DVT in my right leg and a Saddle PE in my lungs. I have found my recovery to be stagnant at this point in time. I still suffer from intense pain in my right leg. I do not have any swelling, but I do have color changes and intense pain. My pain level is high enough to keep me awake at night if I do not take prescription pain meds.
If I walk more than a half a mile a day, sit in a chair without my legs elevated for more than 4 hours, or simply walk too fast, my leg is in intense pain for two days afterwards. Also, the left side of my chest is in constant pain. Sometimes the pain radiates to the right lung; and at times the pain is so bad it makes me think I’m having another clot. I too as the poster of this thread have APS “AKA Hughes Syndrome!” So, that could in essence be part of the reason why my recovery has been slow.
People with APS are at a greater risk for developing Pulmonary Hypertension and other vascular related problems. So, for all of the rest of you guys who do not have this condition, please do not be alarmed by my post. I’m not trying to scare anyone here. I also have Factor 2, or (Prothrombin 20210 Mutation) Heterozygous on top of that. I have not been the same since I had these clots. I have not been able to return to work either. I had a fairly sizeable savings account when this happened to me, so I have been living off of that for the past two years. I do have good days where I feel like I can go back to truck driving again, but then the pain sets in and I am freaking out again.
My current doctor “despite prescribing me pain medication” does not believe I’m as bad off as I am. He keeps on arguing with me that damage to the veins of the leg does not cause the type of pain that I have. He says that only damage to the arteries would cause loss of mobility and pain. I still can’t climb up stairs any faster than a snails pace, and after climbing two flights of stairs, I’m limping for the rest of the day. He also states that the lungs feel no pain and that my lung pain is probably not due to the PE. He will not send me out for any lung tests…but the funny thing about that is he is a Pulmonologist.
I can’t switch doctors because no one else will give me pain meds. It seems like even pain management doctors do not understand the pain that Post Thrombotic Syndrome causes. I was diagnosed with PTS by a vascular surgeon three months ago. I have chronic clots in my leg and my Popliteal vein has hardened, it has what is called ecogenic walls, Post Phlebitic Changes. and narrowing on the lumen (very small opening for blood to pass through)! The vascular surgeon says that surgery cannot repair the damage. Surgery will not get rid of the pain…he referred me to a pain management doc that dismissed my pain.
I have other medical issues: High Blood Pressure, Diabetes, High Cholesterol, Fatty Liver, and possibly other things that they are sending me to a Rheumatologist to get sorted out. I just don’t feel like anyone believes me. Even fellow DVT/PE sufferers do not understand why I’m still in pain 2 years after my DVT. My foot feels like it is in a vice after I wear shoes for too long, my thigh throbs, and my calf and the back of my knee hurt so bad I can’t even tolerate wearing knee high compression socks. How do I get these doctors to believe me when I can’t force them to live a day in my body. Do you guys think I’m an anomaly like my doctor thinks I am? Any advice would be greatly appreciated. Thank you for taking the time to read my story!
Jeremy!
Hi Jeremy. Thank you so much for sharing your story with me and all of us here at BCRN. I have APS too and two years after my DVT and PE, I still struggle daily with pain, lack of energy, extreme fatigue, anxiety and uncertainty. On a personal note, it took me 16 months to find a job and a job that I could do after I lost my job I had when I had my DVT/PE. Recovery, as you know, is a long, slow, painful process and I am not a doctor, but it sounds like you are still going through recovery.
Although I am not a doctor, I do not think you are making up your pain or that is is unrelated to what happened to you. Given what you have disclosed about your other medical issues – so me of which I do share with you – it sounds like there is definitely something autoimmune going on within your body. I don’t know that the pain you feel is exclusively FROM the clots, but I do think there is something going on in your body that is causing you pain. My doctor, who is a hematologist specializing in APS, feels that a lot of my pain is not necessarily due to the residual clot, but it actually an autoimmune component. We don’t know why yet, but I struggle with thyroid problems and potentially lupus. In some way, my body is attacking itself and maybe even causing me pain, problems and discomfort. I don’t know if this can shed any light on your situation.
I don’t know if it can serve as validation for you, but I believe you and you are not alone in what you are going through – NOT AT ALL. I understand and I believe you and what you are going through.
Thank you again, welcome and keep in touch!
I’m so glad I stumbled upon this site. It’s been almost 6 weeks since I found out I have 2 clots in my right calf and multiple PEs in both lungs. The scary thing was I didn’t feel that bad beforehand, my symptoms were so mild that I almost wrote them off, but my mom died from bilateral PEs (she’d been hospitalized and bedridden for several months) and I’m a nurse so after a few days of mild calf pain that was joined by mild shortness of breath the day I decided to go to the ER, I just knew something was wrong. I’m only 33 and haven’t had any real issues, the biggest risk factor was being on oral contraceptives so I thought I was just being overly cautious in going, I couldn’t believe it when the CT and US came back positive.
I was in the hospital for 4 days, the first week after discharge, I could only last 5-10 min of doing anything before I needed to sit down and catch my breath. I live by myself and suddenly I couldn’t do even the simplest of tasks….washing dishes, cooking, grocery shopping, laundry. (Thankfully I had a lot of help from friends and family the first couple weeks.) I’d have some energy and do something simple one day then the next I’d be passed out from exhaustion. It was a difficult adjustment the first few weeks but I’m learning as I go. I’ve definitely improved, regular every day tasks aren’t bad, but there’s definitely a wall and the couple times I’ve pushed myself too much….the shortness of breath comes on strongly and so do the chest pains.
I was supposed to go back to work next week, but I see my doctor tomorrow and I think I have to extend my medical leave because I wouldn’t be able to make it through a 12 hour shift yet. When I first went on leave, I wasn’t expecting I’d have to extend it and I’m frustrated that I won’t be going back to work yet, but I don’t want to go back and make things worse when I’m not physically ready.
This whole experience has been quite difficult….between the physical symptoms and the emotional roller coaster, but I’m learning to take it one day at a time and as much as my friends and family try to understand, it’s not their body this is happening to so it’s comforting to read other people’s stories and know I’m not alone.
Hi Jackie. Thank you for sharing your story and welcome to BCRN! I really appreciate all you have shared with us because you never know when you story may help someone else going through a similar situation, as you know. I am so sorry to hear about the passing of your mother, and I am also really glad you went to get help when you did, knowing her history. I am grateful you are still here.
You are not alone in what you describe during your recovery. I could not do anything for several months after I was discharged form the hospital. Little by little, though, it did get better.
I am wishing you the best in your recovery and your eventual return to work. Thank you for what you do and will do everyday as a nurse to take care of others in their time of need. Take care!
I am a recurrent DVT patient for more then 7 years. But aleast after giving birth of beautiful twin boys I did rest from that pain for about 4 and now it started 2 back. I was on treatment with wafferen tablets and clexine 100ml injection, strict bedrest for a month in September 2015. I got sockings but they are very tied to wear it everyday. But my worries are I am having this funny feeling of a mixer / pain of both legs which I don’t know how to handle so kindly advise
I found your blog this morning while searching for information about how long I needed to stay on Xarelto after a PE. I suffered from on the 4th of July this year after hosting a family get together. I tried to ignore the symptoms because I had so much to do that day. Finally, after the fireworks, I admitted to myself the chest pain I had may need to be looked at. It felt like Pleurisy and I was also on an antibiotic that I thought may have upset my stomach too. I was post op and recovering from minor foot surgery a week prior to the PE. My doctor poo poos any information on the internet but it saved my life. I googled my symptoms and that’s how I discovered I had a PE. It’s been a little over 3 months since it happened and yesterday I thought I was going to collapse at work. I have to stand most of the day in surgery and most days and I feel totally exhausted when I get home. A couple of days this week I came home and laid on the couch most of the evening. I usually work 10 hour days but yesterday I was there 12 hours. I joined a gym thinking I would feel better if I exercised and it helps a little. I also go for the message bed 🙂 The stories you all have shared has made me realize I may need to allow myself some more recovery time. I had a small clot on my left lung and was released from the hospital after 2 days. That made me think I should bounce back sooner and it did in some ways. My heart goes out to those of you who had saddle embolisms or more than one. I want to be off of this medication so bad! I believe it has saved my life but the side effects are no picnic. I may look into going to shorter days now that I see there may be a physical reason to ask for it. I think everyone looks at me and expects me to return to normal faster than I actually can at work.
I also read that some of you had issues with your thyroid after a nuclear scan. My doctor put me on Synthroid a few weeks ago after my blood work came back indicating low T4 levels. I didn’t realize a scan could affect you that way. Interesting…. I’ll have to discuss that with my doctor next time I see her.
Anyway, thanks so much for sharing…
Jennifer
Hello Jennifer and welcome! Thank you so much for being here and for sharing your story with us. I am so glad you sought help when you did – and glad you are here to talk about it! Wow, what a story. Do they think the foot surgery caused your PE at this point? Please know I am thinking of you and wishing you well on your recovery.
As a side note, I also have problems with my thyroid, but not as a result of a nuclear scan. My endocrinologist, however, believes that there may be some merit to a link between thyroid and blood clotting issues. I have antiphospholipid syndrome, which is autoimmune in nature and is believed to have caused my clots.
If you can do shorter days, I definitely think that could be beneficial, especially if you are not feeling well or having trouble doing normal things again. I am thinking of you and please keep in touch. Take care!
What were your side effects on Xeralto? I’ve been taking it since my small PE in left lung, 6 weeks ago. I’m struggling with this drug, I feel terrible all the time. Are you off it now. I hope so!
My pulmonary embolism happened on August 3rd of this year and I was out of the hospital In 3 days. So far I have trouble breathing most of the time and I am in constant pain. When I go to bed at night it takes 2-3 hours for me to be able to fall asleep. When my alarm goes off I feel dizzy, my hands, face and feet are numb and to the touch I feel cold but I am sweating profusely. I have talked with my doctor about this and he said that because I am no longer on birth control (the cause of the clot) my hormones are going crazy and I need to have an ablation and tubal done. My periods last up to 10 days and I go through 3 large boxes of heavy pads. I cannot use tampons anymore, it is too painful. Does any of this make sense or do I need to get a second opinion? Also!! When they did the dapper in the hospital they could not find where the clot came from. So they guessed it was caused from my birth control. I am 35 and I am not the healthiest person. I have panic attacks and also have been diagnosed with anxiety and atrial fib. I try to eat as well as possible but sometimes when I am extremely tired it’s easier just to either not eat or eat out. I find it very hard to stay awake in the morning and I have also fallen asleep after dropping my son off at school. Luckily I was parked. I then drove to the hospital where they told me I had severe fatigue and I just needed to rest. Does anyone else have these issues?
Hi Valerie. Welcome to BCRN and I thank you so much for sharing your story! You are not alone in what you are feeling. I have felt many of these things – fatigue, dizziness, trouble sleeping, restlessness, hot flashes – all very early in my recovery, but things have slowly improved over time.
I am not a doctor, but I have a couple of thoughts on your situation. Has anyone done any further testing for blood clotting or autoimmune disorders? The doctors originally thought my clot (I was 29) was exclusively from birth control, but upon further testing it was found that I have ansiphospholipid syndrome, which is most likely the cause of my clot. The extreme fatigue you are explaining sounds like it is a large part of the recovery, but I am also wondering if anyone has ever checked to see if you have any hormonal imbalances, like your thyroid. My thyroid is a big source of my fatigue and health problems like sleeplessness, extreme anxiety and inability to lose weight right now. I believe my thyroid is causing more problems than my recovery right now. So, it may not hurt to get an opinion or second opinion on some of these issues for you to try to find some answers.
Where you are in your recovery right now is very normal – it’s hard, it hurts and it feels like it is not ever going to get any better. That does not feel good, I know. It does get better little by little over time, it really does, although I know it does not seem like it now. You are not alone.
Please keep in touch and let us know how you are! Thinking of you.
My Mom had a PE mid July. She is slowly improving but still needing oxygen at home. Does PE often drop your oxygen saturation levels even during recovery? She has a pulse oximeter and will drop to 87, very rarely as low as 83. A bit of oxygen and rest and she is back to mid to high nineties. She only has one lung but has done well for a long time before this happened. Any thoughts?
Hi Tracey. I am glad we were able to connect via email regarding your concern. My best to you and your mother as she continues to recover. I hope she is seeing a few more better days.
I have just had my first chest infection after have a PE in April of this year. It’s absolutely knocked me for six. I feel like I did when I first left hospital 6 months ago. I’m beyond exhaustion, my energy levels are at zero and i have found this experience terrifying. seems like I have took 20 steps back 🙁 x
Oh no, Kim! I do hope you start to recover and feel well again soon. I know ever since my clot when I get sick with a cold (or anything), it seems to magnified and the symptoms intensified more so than before. I have heard several other people talk about that as well. I was also up and down majorly for about the first year. I would feel great one day – and even take a walk or something – and then the next day I would feel like I was back to square 1. All I can say is that you are not alone and try to rest as much as you can because your body is not only still healing from the DVT, but healing from this infection as well so it is working even harder than it was healing from the PE alone, which is a big thing in and of itself, as you know. I will be thinking of you and wishing you more good days than not and that you start to feel better soon. Take care.
Thank you so much for the reassuring words. What you explained is exactly how I feel. I visit this site often and see the great advice, comfort and knowledge that is on this page. Once again thank you xx
Thank you for being here, and thank you for your kind words. I hope you have a wonderful Thanksgiving. Take care and talk to you soon!
I meant to ask on my first visit here to this web site. When its hard. to breath, is that the clot in my lung, or something else. Like copd or allergies?
Hi Marilyn. It could be a number of things. It could be a part of recovery or an underlying issue as you mentioned. I do believe if you are having any problems breathing, it is important to get in touch with your doctor just to be sure there is nothing new going on. I hope you are well and have a wonderful Thanksgiving!
November 22 I went to urgent car because I had been feeling weird for a couple days, I had pain when I took deep breaths . I was sent to the emergency room because I am over 40. I had 2 small PE’s in my left lung and 1 in my right. I was hospitalized for only 24 hours. I was surprise to be hospitalized at all because I did not feel that bad. I had to do 2 shots of levenox a dat until my INR reached 2. I have only been in range for a week. My primary Doc has me on warfarin for 6 months. Everyone was so nonchalant about everything those first couple days I figured PE’s were no big deal, I would just take the medication and feel fine. The problem is the pain has gotten worse so I googled about recovery and found this blog and other medical information saying recovery can take a while. My doctor did not say a word to me about having pain for a while. Glad to know this is normal. I am only 18 days out and now I realize I might be over doing it. Pain is definitely worse at night, and I tire easily. Now I am a little worried about going back to work. I am a flight attendant, I am off until Jan 1st.
I am so happy that I found this website. On November 15, I was diagnosed with bilateral PE. I had started not feeling well about a month prior, with (what I know now) classic PE symptoms- shortness of breath and a cough. I had gone to my local urgent care, and was told that I had bronchitis, sinusitis, and upper respiratory infection. I took all of my prescribed meds, and still didn’t feel well, but chalked it up to the bronchitis. Then on November 15 I started having the chest pain that got to the point where I couldn’t breathe, was nauseous, and almost passed out. I found out that the chest pain was plueresy, which, honestly, I wouldn’t wish on anyone! My husband took me to the ER, where they did all the preliminary tests (chest Xray and blood work), and the doc also ran the Ddimer test. From there I had a CT scan which showed the clots. What really confused me, and the doctors, is that although they feel the clots started as a DVT I had absolutely no pain or trauma in my legs. I was started on heparin and was admitted to the Cardiac ICU. There, I had more bloodwork done and a sonogram of my legs. The next day I was started on Xarelto and discharged 3 hours later. When I followed up with my PCP a week later she informed that the bottom lobes of both lungs was one large clot and my upper right lung also had a clot. She ordered another leg sonogram as well as an scan of my heart. The leg scans came back clear, and I am still waiting to hear about the results of the heart test. I also saw a hematologist this past week, who ordered a TON of bloodwork. The doctors are unsure what caused the PE, but seem to think that it was my birth control pills. I question that though, because I had been on the same one for 8 years with no issues.
I still get a little tired and out of breath. I almost feel like I take one step forward and 2 back. I know I am only 1 month post-diagnosis, and my doctor told me it will take months to get back to where I was, but it’s tough. I kind of feel like a ticking time bomb, which my doctor says is normal. I am also worried about a recurrence. I am only 37 years old, and right now have a hard time walking upstairs. Luckily, I only have minor pain in my back, and have been learning to not overdo it, which is hard when I am used to going at full speed ahead being a mommy to my 8 and 10 year old.
I am on Xarelto for 6 months. One question I do have is: how will I know if the clots are gone? I don’t think I will go back to “normal” knowing that they are in there.
Thanks for all the information. When I stumbled on this site I felt I had hit a gold mine-lol!! 🙂
Hi I have searching websites to try and make sense of what has happened to me and so relieved to find this site. I am 53 and recovering at home on blood thinners after a week in hospital with a very large PE on both lungs. I am exhausted afraid worried anxious tearful and feel i will never get my life back. Reading posts on here is helping me so much to understand how I am feeling. Thank you.
Hello, Deb. I know it has been some time since you have written, but I am thinking of you as I remember exactly how it feels to be where you are in your recovery. I assure you, little by little – week by week and month by month – it does, ever so slowly, get better. I hope you are seeing a few better days now than in the beginning. Thinking of you! Welcome and thank you so much for reading.
Hi Sara good to hear from you. My latest CT scan was ok but emotionally i am really struggling and am now being sent for cognitive therapy to help me. Its a long and painful road to recovery.
You are right, I still struggle emotionally myself so you are not alone. Thinking of you as you continue to recover.
I was just found 2 have a DVT in my right leg and pe in my right lung..Can the affect my eye on the right side it seems so blurry now;
Hi Vickey. Blurred vision could indicate a problem with your blood thinning medication or even something serious like a stroke. I hope you were able to discuss your concerns with your doctor. Thank you for stopping by BCRN and take care!
Hi, i was diagnosed with a Pe about three weeks ago.Reading this helped me somuch.Had a dvt in my right leg 8 months ago and just recently got one my left leg after being takein of meds for only 3 months had just pains and went straight to hospital and now have PE . I work construction for living and looks like ill be out of work and this bothers and scares me alot.I thought i was going crazy i still have shortness of breath and was think of go back to er last night than start goggleing to get answers. I scared to go back to hospital cuase i dont wanna seem like some nut job who goes there for every lil thing now. But Im only 34 yrs old dont know how to handle this. I wish my dr explaind more to more to me all he said was ur messing with fire kid and i swear that echos in my head daily.im take some new drug called xarelto and i guess its good . Is it normal to be on pain meds for DVT ? My legs feel so restless especially at night. thankyou Sarah
Hello, Jose and welcome! Thank you so much for stopping by BCRN and for your kind words. Yes, you are feeling completely normal, and I very much remember how it was to feel this way. I think it is normal to be on pain medications for a DVT as well as it is very painful because of the restricted blood flow, from what I understand. I was on pain medications in the hospital and once I got home too – for a few months, until slowly, but surely the pain started to fade or I got used to it. You are not alone in your recovery, Jose! I am thinking of you and hoping you now have more good days than bad. Thank you again and thinking of you – take care!
Hello, Jose and welcome! Thank you so much for stopping by BCRN and for your kind words. Yes, you are feeling completely normal, and I very much remember how it was to feel this way. I think it is normal to be on pain medications for a DVT as well as it is very painful because of the restricted blood flow, from what I understand. I was on pain medications in the hospital and once I got home too – for a few months, until slowly, but surely the pain started to fade or I got used to it. You are not alone in your recovery, Jose! I am thinking of you and hoping you now have more good days than bad. Thank you again and thinking of you – take care!
Hello to all of you… I have been reading what all of you have wrote and scares me more… I’m 35 years old with 4 boys and been healthy up till now… on September 28, 2014 I didnt feel to good. I was short of breath and felt faint. I just thought I didnt feel good and was coming down with something. On the 29th while I was at my kids dentist appointment I started sweating couldnt breath well at all, hands very clammy. My husband looked at me and said I’m taking you straight to the hospital. They gave me xrays and hooked me up to heart monitors, was very scary. Then with in an hour they came to me telling me that you have 2 massive clots in your lungs. I started crying and my husband was freaking out.They told me if my husband would have not brought me in, I would not have woken up the next day. They admitted me and I was put on the floor with all the heart issue people. I was hooked up to so many machines for 6 days. When I was released I was put on Xarelto 10mg 2x a day. After 3 weeks they put me on 20mg 1x a day… The only thing they explained to us was my blood has genetic for blood clots and I will never get off the Xarelto. They never explained anything else to me and my husband. It is now January 3, 2015 and I have been in and out the hospital for different things. My left upper arm hurts and goes numb to the point I can’t use it. NO one can tell us why. I’m still short of breath alot. I still feel faint alot. Now the new pain is in my left lower abdomin and I have a brown color discharge. I look this up and from what I gather it’s saying I could have DUB. So now I need to speak to the doctors about this. I’m just so scared and just worried anymore.. I’m glad that I have read all of your blog’s and comments but just still really worried…
Hello Kendra, thank you so much for your note, and I hope you are feeling better. I know how difficult and scary this is. Were you able to get a name for the clotting disorder you have? That is very important so that you know what you are up against. I recommend finding a hematologist if you do not have one yet, and here are some questions you might wand to ask to get the answers you need – http://bloodclotrecovery.net/first-follow-up-appointment/
I know it is not easy, but if you are not getting the answers you need, please do not hesitate to seek another opinion. It is your health and you are your best advocate.
I am thinking of you during what I know is a very difficult time.
Hi Sara
I really enjoyed reading this down to earth and basic explanation! I suffered the very same thing you did and my first question was “When can I run!?” as well! I am a rare case for a PE, 20 year old division I field hockey player, so I was very much heart broken to find out I was diagnosed with a blood clot. Unfortunately for my case, I am on blood thinners for an entire year, and was unable to compete this season and spring as well. It was very difficult to deal with something this tragic and life changing, especially when you are only focused on WHEN you will be 100% better and not HOW to get 100% better. And of course the doctors do not know how to answer our questions the way we want too! It’s a long process, mentally and physically, and it’s nice to hear about other stories of people who stay just as positive as you.
Thanks this post really made my day! 🙂
I had surgery January 7th to have a hysterectomy. Which ended up causing a mini stroke along with 2 clots in my left lung. While I was in the hospital for my hysterectomy I asked them about my facial problems, which was tingling and numb. Then unable to move the left side of my face. They said it was from the meds. I was released the next day, only to be re admitted that Tuesday with 2 blood clots in my lung. They say I’m lucky. But I’m by far that… I’m truly blessed to be here. I’m 34 years old and I am a very active person. I find myself impatient for recovery to start. I have anxiety at night from all this. I find this site supportive and it has helped me a lot and I’m just 5 days into my road to recovery. Thanks
I had a PE about 2 weeks ago. The doctor said I had multiple blood clots in both lungs. About 10 years ago I had a DVT I can’t help but be scared of having another.
So sorry to hear all the people on here suffering with blood clots.I have a large blood clot on my left lung that happened after surgery to remove a Tumor in my ovary.I only went in for day surgery and nearly died.The surgeon messed up and I was told that I was very lucky to make it through .I was in a coma and was given 32 units of blood just to make it through.They cut my iliac artery (the artery that feeds the legs)I nearly bled to death in recovery.Any way long story but I was then in intensive care for five days and was sent to a ward down from intensive care and a large PE was found and two hematomas one in stomach and one in pelvic area,Quite large.It all happened three months ago but I’m still feeling so awful.My hair is falling out(not sure if it’s warfarin) and I can’t do much at all,My doctor thinks I’m doing amazing and says I’m lucky to be here.I know I’m lucky but when I going to be able to just walk to local shops without feeling wiped out .My left leg /knee is swollen and gives me a lot of pain.My left foot swells up and basically just feel ill all the time.I have been rushed to hospital four times with awful pains in upper abdomin/chest..Pain as bad as labour pains.They have to inject me with morphine just to take the edge of it.The hospital say it’s my old pains and no new clots but I’m not sure I trust anything anymore.Not sure what to trust.All I know is life is so damn tough and just want some answers.
I’ve searched so long for other survivors. I read on many of the comments about us all being told “by a lottery ticket”. Or “you don’t know how lucky you are”. And surprisingly it doesn’t make you feel better at all. I was “gently” forced to the er by my hubby with chest pain a month after I had my first child. I’ve battled anxiety for yrs so I did my best to convince everyone it was just stress but after one test the dr Cam in and the only word I heard after about 5 mins of talking was FATAL. Come to find out I had 5 PE’S and a saddle Pe. So that started my 2 week vacation with my hubby and son in the hospital. I found out a yr later that they told my family to “hope for the best but prepare for the worst”. I was on coumidin but I guess they were still worried one could break off and go to my brain. I remember walking down the hallway to see if my oxygen was good enough to go home and almost collapsing from exhaustion from a few feet! Once home I got no real answers. No one could tell me why it happened (now they assume c-section) and my dr was very unknowlegable and unsupportive of recovery and when I kept showing up for chest pain. I’m 2 yrs in with 3 additional cat scans for chest pain (all clear) and I’ve started researching on my own to further my recovery and get answers. I still have pain now and then and it’s heartbreaking I can’t always keep up with my son but I know how lucky I am and realize the Lord wasn’t done with me yet. I have an incredibly supportive hubby and friends. Even though sometimes it’s hard not to get depressed they pull me right out of it. I’m so happy I found a group of other survivors. You are all fighters and I’m so glad you are all here to tell your stories
I had a massive PE a year ago next month, from a clot following a ruptured appendix surgery. I had only been home from the hospital for two days when I collapsed and completely stopped breathing. The massive clot stopped my heart and I had CPR three times. I was in the ICU for three days. I too was treated like a ghost afterwards. I shouldn’t have survived, but I did. Everyday has been better than the day before. I’m no longer on Warfarin,so my hair has quit falling out and is actually growing back in. I love my job but I can only work 4 hours a day or get I bad headaches. I remember at about 3 months after the event saying I thought I was 90 % back. I wasn’t in pain anymore but I was far from 90%. I still don’t think I’m at 90%. Physically I get tired easily but my main concern is brain related and I didn’t see anyone comment on cognitive challenges. Maybe it was the drug treatment to break up the clot or the CPR (maybe some oxygen deprivation) but my cognitive challenges create part of my fatigue. Everything I do feels like I’m doing it for the first time, even though I did it many times before the event. Cooking, driving, shopping, etc. It’s exhausting. Reading and writing are both difficult and I make a living reading, writing and teaching. I cannot multi task at all. If I am thinking about something I can’t process what someone is saying to me, even though it looks like I’m listening. I’m fortunate that my family and co-workers are more understanding about it than I am and they often remind me to take it easy. I realize I could be in recovery another year and I’m starting to hope so. I’d like to think I can improve that much more. Your comments have been helpful, reminding me that I am still in recovery and not “recovered”.
I too suffered a massive bilateral pulmonary embolism on September 24th, 2015. I survived 6 cardiac arrest and am grateful and humbled to be here. Interestingly enough I also feel as if I am no longer as focused as I once was. I often feel as if I cannot process information, nor hold a thought. I am an educator so this can be very frustrating. Casual conversations I find myself searching for words. I am still on Warfarin 8 mg, Amlodipine and Metoprolol. My body aches constantly, legs especially. It feels as if I have severe arthritis. My doctor says my PE could have been the result of HR replacement, knee surgery or both. It has been 16 months since.
Hello
Got out of the hospital last week. Very freaked out–Large Clots in my right leg and multiple emboli in both lungs. The hardest thing about this is that I don’t seem to be able to get a definitive answer from any of the doctors. One person tells me to wear the compression stockings the other doctor tells me not to because it could encourage the clots to move up. I really don’t know how long these clots are still mobile. It sucks. I am in the NYC area and I found that there is a research center for DVT and PE in northern NJ. Is it worth it to go to a center? Also I am on Xarelto and my liver functions tripled in one day after being put on the meds. Dr repeated test and it came back normal. Taking bloods again this week. Its really a roller coster and I feel really fragile. I am supposed to go back to work tomorrow. I am really worried about moving around too much. So few answers? Really appreciate the work of the this blog. Thanks Sara!!!! I feel a bit like a ticking time bomb. Any advice appreciated.
Hi Sara
Reading this makes me feel so much better. I am currently in hospital (icu for the past 10 days) hoping to be out by Friday. Also have multiple bi-lateral pulmonary emboli. I am lucky that have not had any of the symptoms described above. I only had a dry cough and shortness of breadth which made it very difficult for my local GP to diagnose. I am still on heparin but am also on Walferin which I will need to take for the next 6 months. I am really hoping all the best for you all and that we all do have full recovery. The scary thing with me is that even after 3 days of heparin usage the number of blood clots increased … I am having another CT tomorrow in the hope that my body is finally going to stop forming more clots.
Hi, its good reading stories from others that had simular cases. Mines started with leg pain for a few days but i put that down to my excersize regime of walking a dog a few times a week for a couple of hrs. I thought i just over did it and so rested it, using pain killers, muscle rub etc. Was on a monday evening when the pain got worse, then i started developing shortness of breath and a pain in my chest. My mum who was with me at home just thought that it might of been one of my panic attacks, but then my sister turned round and said should i call an ambulance? So phoned emergency number and paramedics came out to check me over.
i was fine talking to them, describing how i was feeling, then one of them turned around and said worse case scenario it could be a clot, so will take you in just incase. So i walked out to the ambulance, but before i got there i collapsed at the top of the driveway, i woke wondering what happened, i was worried what was going on with me. They got me into the ambulance as quick as poss and my mum came with me. I cant remember much of the ride as i was in and out of consciousness. When we got to the hospital i was rushed into A&E but i took a turn for the worst and was rushed into ressuss as i had a cardiac arrest. They had to use chest compressions to bring me back and they hadvto thrombolise me twice as the clots were multiple and clogged my heart too. After they brought me back i had to be put into a medically induced coma to help my body recover as my anxiety would of hampered things. I developed acute kidney failure too but was hooked up to dialysis for a few days to help. I dont remember a thing of my first 2 weeks on ITU, i was being pumped with drugs, had lines in arms, neck both sides and had bags for my bowel movements. I just remember having countless bad dreams and delusions while in there. When i did regain my mind again, i saw how much i was affected, bruises almost everywhere and i couldn’t move much and had to be helped with nearly everything. Eventually got better enough to be moved to high care and within 24 hrs was feeling more me. I had the mental health team and physio help me through whilst there and once my warfarin was kicking in and was ready to go home, they discharged me.
I’m in early stages of recovery, i get good n bad days. I suffer headaches after a nights sleep but under control with paracetamol, i am on warfarin and also a beta blocker and blood pressure tabs. And i am suffering restless leg syndrome also i have weakness down the right side of my body but am just lucky and trying to stay positive about my situation as i survived this scary thing. I am being case studied by haemotology as my DVT in my leg had no other symptoms and i’m 35 with an active lifestyle, no long journeys made and they feel i might have sticky blood or something simular. I’m learning to keep going as i have a second chance at life and no matter what i will be strong and pull through.
Thanks so much for this educational website. My husband had pneumonia and then a subsequent PE. I was very ignorant of how really serious this condition is in respect to healing time. He is in his early 60’s. While he’s only had this diagnosed and treated in-patient a month ago, I got the wake up call by reading thru this site to know that it will take several months for him to get back to health. Some days it is good (and I think OK – it’s mostly over) and other days he is much more fatigued. I had no view this is a “touch and go” healing process…..also I need patience with some minor confusion he has experienced and other times of him being too temperamental. Now I understand why and that the condition does not resolve once a person leaves the hospital (duh). Thanks soooo much for this education! I really needed this information.
I’m 40 and just been diagnosed with my fourth Pe first time I ahd that many in both lungs they where shocked I was still alive 2,3 time had 3 in total but this most recent I was told I had a massive Pe in lower right lung sent home within 24 hours on xralto still waitnj g for an appointment with blood specialist , had to go private as I still havnt recieved an appointment as I need a procedure done as I have abnormal cells on my cervix , j have no support im a singl e mum I’m exhausted all the time . It’s a shock to me what I’ve been reading on this page no docter has told me any of this , if anyone out there can give me more information I’d be very gratefull!!!!
Hi all
I woke after being in a induced coma/critical tracheal stenosis needing surgery after misdiagnosis for 3 years, I woke with a numb leg, I told my nurse’s, I told my Doctor, but had no other symptoms so was sent home (1 1/2 hours on a plane)
next day I couldn’t walk and talk, back to my local hospital, x ray came back as pneumonia, treated for 3 days in hdu I told the nurse’s I told my Doctor I had a numb leg, huge amount of pain through my shoulder blade and back, couldn’t walk to the toilet but was sent home, next day back to hospital DVT in numb leg, PEs in both lungs lots of little ones as well as a few big ones, I’m on 11mgs of warfarin, it took 6 weeks to get me up to INR 3 and if I get cut I still clot!!! I’m exhausted and when I asked my Doctor how long will I take to recover he said “how long is a piece of string” so thank you for starting this blog, I needed to find out why 4 months after induced coma and DVT/PEs why I’m so tired, I can wake up feeling good, but by the time I’m dressed I need a sit down, I drive to town and after being in a shop 10 minutes I’m sweating and need to leave, until reading other peoples accounts I thought I was being silly and maybe wallowing in my pain, but now I realize that this is going to take another 6 months to a year or two before I’m truly better, I too thought maybe I was going mad, my Doctor has now (3 weeks ago) diagnosed post thrombotic syndrome which explains the ongoing ankle swelling,
I now know I’m not alone, Thankyou
Hello everyone,
I just came over this website last night when I couldn’t sleep. I’m 29 and I was diagnosed with bilateral PE a week ago and don’t know what to expect. Can someone please explain to me my do’s and don’t? I feel fine expect for in the morning when I wake up I have pain on both of my sides along with shortness of breath. I have a nine year old daughter and I’ll like to go play with her outside and run around but I was told to take it easy and rest. Someone please help
I am at about my 2.5 year mark post discharge. I had clots in both lungs, left being the worst. During my hospital stay it was discovered I had an additional genetic mutation (the first was Essential Thrombocytosis or “ET”) Hyperhomocystenemia, the ET post PE is now referred to as Primary Thrombocythemia, are my official diagnoses (and both genetic mutations). My treatment for these mutations consists of Hydroxyurea 500mg, Aspirin 325mg, and Folbic (B6, B12, & Folic Acid). I also take other meds for migraines (about 10 pills), all of which are taken daily. If I walk at a normal pace I seem to be ok, but if I walk while carrying anything (folders perhaps) I become very short of breath, my head aches, and I have to sit down until I catch my breath. I did P90X prior to this happening…NO WAY will I try it now, I am afraid my heart and lungs will arrest or I will suffer a stroke from the exertion (sad). Needless to say, I do not feel I have healed and wonder if I will ever return to some kind of “normal” at any point during the rest of my life?
I have noticed a problem with memory and difficulty expressing thoughts and ideas. I am listless and fatigued. When I shared this with my hematologist during my most recent visit last month, I was told “I know about these things” in response to my questions about disability. I did not feel comfortable even asking him about recent achievements in R&D (video of 2014 conference). Of course, I will not see this physician again despite the fact he has followed my progress since my admission and can be credited with finding the second mutation.
While I am not glad anyone has experienced this I am grateful to find this blog and others who feel as I do. I am not the only one feeling this way and this physician is completely unwilling to discuss any other options that may come about…just keep me on the chemo regardless of how I feel. He really is not interested and does not want to deal with my conditions beyond this point.
Anyway, sorry for the rant, but thanks for reading!!
https://www.youtube.com/watch?v=c2gbHUXy3Rg
The video I referred to. Very informative.
I am so happy to have found this site. I was diagnosed with multiple PE in both lungs in November. It is now April and I am still sleeping anywhere from 10-14 hours at night, depressed, breathless, dizzy, and scared. Reading this has given me a bit of hope that someday I will feel better. I’m going for an echocardiogram the week after next and keeping my fingers crossed.
I had a bilateral pulmonary embolism on 1 March 2016 and they found two blood clots in my right calf as well. I was only in hospital for two days because I didn’t feel sick. Since then the tiredness has wiped me out. My local doctor thinks its partially due to the psychological trauma of being told I could have died. My physiotherapist thinks it is just a loss of conditioning. I have had 12 weeks off work and I see my specialist in June. I have a big overseas trip planned for July. I am frustrated because of the constant tiredness. I’m bored with resting but I still get breathless at times for no reason. I have mixed feelings after reading this post because I was hoping to feel much better sooner rather than later.
Kathy, I was diagnosed in the emergency room with bilateral submissive PEs and a recurrence of the DVT in my right calf. My only symptom was my inability to breath. I had recently had the flu and was assuming that my breathing issue was just a hold over from that. I, too, was in the hospital for only 2 days and release with a script for Xarelto. My wife was told by the night nurse the first night that if I made it through the night, I had a good chance of survival. For the first month of recovery, I was very tired and still had breathing issues. About 5 weeks after the ER visit, I started to feel like I was getting my energy back, and now at the 3 month mark, I still have my limits, but feel like I have turned the corner on this one. I did switch from the Xarelto back to Warfarin because the Xarelto was going to cost me more than $10 a pill, plus it is not reversible in an emergency. I was on Warfarin with my first DVT and it did not seem to cause me any side-effects, plus it is cheap.
While I may never get back to the level of athletic activity I was doing before this incident, I am very happy to be alive and believe that I still have a long future in front of me …
Best wishes on your recover!
Hi everybody, same story, rushed to hospital with very swollen left leg, and blue in colour. Was lucky to fall into the hands of a courageous surgeon, who performed a thrombolysis procedure on my leg, and the CIV in my abdomen, as the procedure is very risky. But, I had no choice due to the severity of the situation. Leg and CIV all cleared after being connected to various machines for 24h, but, have been told that I also have PE in both lungs, which they did not do anything about it, apart giving me Rivaroxaban 20mg to take each day for the rest of my life.
Yes, I feel tired, have backache, and badly out breath after the smallest effort.
Yes, the GP wants to push anti-depressants down my neck to keep me quiet, but, I am not depressed, just scared, and frustrated that I can not get on with my life as I used to. Pulled 3 weeds out of my garden, and had to stop due to lack of oxygen in my lungs! Out of hospital since the 1st April 2015, and still feel very weak, although, I am starting to get about a little more. As you all say, GP are not interested, and as for the hospital, they did not arranged for further check ups???
Feeling a little lost, although I have got a friend who helps me all he can, and that keeps me going. Things that I have added in my diet, as, I believe these food are good to dissolve blood clots in the body: Pineapple, apples, almonds, avocados, sesame oil, garlic, onions, turmeric, salmon, manuka honey, lemons, coconut oil, low iodine salt, ect… It is my way of keeping positive, and making me feel that I have some control over this horrible condition. I feel for all of you, and, perhaps it will help when you realize that we are not alone. Be thinking of you all. MC xx
MC,
It is still very early days for you. Try to take it easy and listen to your body. I too was a very active, healthy woman when I suffered my PE, actually an infarction that killed the lower lobe of my left lung. It has been 5 months and I am finally (almost) back to normal!! Day to day tasks I can handle and I am up to 2 miles on my bike without resting! Praise God!! Still cannot do a workout like Zumba, but I think that should come in the next month or so. It;’s great to see you are into healthy eating. Keep your body and mind nourished and you will heal. The anxious feelings diminish with time too 🙂 All the best to you! Oh did I say….Listen to your body! LOL that really is the most important thing.
Was such a nice surprise to see your reply. I am perverting with good food which could help resolving the blood clots in my lungs, as still very much out of breath. The other serious problem is a very bad lower back pain, which started when I having the thrombolysis, and implant of stents in my Common Iliac Vein, The pain was terrible at the time, but, because the hospital gave me a strong cocktail of pain killers; including 3 different morphin, the pain was just acceptable. Now I am at home, I just have micket mouse pain killers, which does not work. Back pain can, in some instance be a side effect of thrombolysis, and, as I have signed the risks list, I was aware of the complications, although the backache was not mentioned. I am just too happy that the clots in my leg and the CIV are gone, and I would not dream complaining about it.
Perhaps I could find an understanding GP that LISTEN, and ask him if I could have a MIR of my lower back, to see if something can be done, as it is affecting the way I walk. It seems that what ever is wrong, is pinching the nerves in my legs. After all that, it is a pity that I can’t walk without pain in my lower back. My left leg being completely free from pain. Once again, thank you for your reply, and, like you, I have a bicycle waiting for me in the garage, you have inspired me, and might have a little go when the sun decide to come out a little longer at the time. Feeling less isolated, which is helping me to cope much better!! MC xx
I had a DVD (bloodclot in my lower left leg) 5 days before my scheduled hip replacement surgery, while I was at work. My whole leg was very swollen and purple and I was hospitalized on the heart ward for 2 days and put on Warfarin. The surgery had to be postponed, and since I was more scared of the surgery than the bloodclot, I was actually relieved when I got it. No one explained me anything, except that I should call 911 if I could not breathe or had a heart attack. After 6 months, the Warfarin was discontinued and the hip-replacement surgery rescheduled.
I was told that the bloodclot was caused by my oral bio-identical hormones, and now without my hormones I returned into menopause with hot flashes and night sweats in my seventies.
Only 1 day after my hip replacement surgery the blood clot returned and I was back on Warfarin.
I am now back home with a broken femur bone as a result of my hip replacement surgery, with my blood clot in the swollen left leg and the right leg still swollen from the surgery, in menopause with hot flashes and night sweats. Next week I’ll attempt to go back to work with a walker. My doctor said that I could.
I am glad that my INR is between 2 and 3 and don’t have to worry about my blood clot going anywhere or of getting another one. I found a wedge to elevate my legs at night, and I do not eat salt, to make the swelling go down. I feel lucky, because now things can only get better, because they can’t get any worse. The most I miss are my hormones!!! I watched myself wrinkle and aging like I was in a time machine.
I found out that I should not have taken the female hormones by mouth and have them go through my stomach and liver, that that causes blood clots. I should have taken them in cream form to go right into the blood stream. Well, no one told me!
Well Christa, you have been through quite a lot.
My extensive DVT in my knee, thigh, and common iliac vein have been treated with a thrombolysis, plugged into machines for 20 hours. It all cleared up except for the iliac vein. The surgeon had to drill through the vein, and insert some stents, as, he did not have one long enough! It took me 2 months to start to recover from a bad back, as the rod from the thrombolysis came very close to the nerve which is in the lower back. Was told that I have blood clots (PE) in both lungs, but they will dissolve by themselves in time! What time…….. Was not told, and I am still very much out of breath after the slightless effort!… Had the thrombolysis on the 25th March, and was sent home on the 1st April, still early days. I am taking Rivaroxaban everyday for the rest of my life, but won’t have any check ups????
Also I am more than thankfull for all they did to clear all my veins, which were going to blow up! I regret that nobody sat with me, and explain a little more what was going to happen next, and give me a little more support.
You seem wonderful to go back to work in your seventies! I am 66, and feel and have not half of your energy, well done! MC
It has been about 14 months since my DVT/PE diagnosis. I’d had minor knee surgery and the DVT, and subsequent PE, were a result of that knee repair. I was prescribed Xarelto and took it for about three months. I was able to go off the medication when a follow-up ultrasound and CT scan revealed that the clots had resolved.
I experienced the crushing exhaustion that so many other people have written about. Over the past 14 months the extreme fatigue has tapered off very gradually. Every once in a while I still get so tired that I literally feel off-balance, but not very often now. Even though the exhaustion has mostly passed, I never feel truly rested. I can sleep all night and still wake up tired. Does that make sense?
I resent the anxiety that the DVT/PE has brought into my life. In the past year every ache, pain and cramp has had me on high alert. I have a very thoughtful and kind doctor who has sent me for ultrasounds to ease my worries. Each time I’ve been clot-free. I am starting to be less anxious as time passes.
A new thing in my life is GERD (gastroesophageal reflux disease). I had never experienced this problem until after I started taking Xarelto. A few weeks after I started taking it I developed a “lump” in my throat. I thought it was somehow connected to the PE and assumed it would eventually go away. It got worse and other symptoms surfaced. About six weeks after I learned that my clots were gone and went off Xarelto I experienced frightening chest pain, pressure and shortness of breath. I went to my doctor and she diagnosed GERD. The doctor has not connected it to Xarelto, but I have to wonder if it contributed to the onset. Acid reflux was never a problem for me until I started to take Xarelto. I would be interested to know if other people have experienced this problem.
An ongoing problem for me was shortness of breath. It persisted even after the clots were resolved and I was medicated for GERD. I saw a lung specialist who ordered a pulmonary function test and a heart ultrasound. Everything was good, although my right ventricle was slightly enlarged, but nothing to worry about. I also saw an allergist who determined that I was allergy free. He suggested that perhaps I had a vocal fold dysfunction so he referred me to an Ear/Nose/Throat specialist (ENT).
The ENT basically said that after the PE l coped with my discomfort by taking short, shallow breaths and my brain kind of “forgot” how to breathe properly. She referred me to a speech therapist for “respiratory retraining”. This was the most helpful thing in my whole recovery!! The speech therapist taught me about diaphragmatic breathing and coached me until I learned how to breathe properly. It is so nice to be able to fill my lungs again! She also had me do some vocal exercises to strengthen my vocal folds. I had to sustain various notes for as long as I could. I found that this really helped me build up my lung capacity. I think everyone who has had a lung issue should have access to this therapy.
I work with children and exposure to germs is a job hazard. I’m usually pretty resilient. I rarely get sick, or at least just get a mild version of whatever is going around. This year I didn’t get a mild version of anything! In the last ten months I’ve had laryngitis, a chest infection, sinus infection, stomach flu and pink eye as well as several bouts of the common cold. Each illness was fairly severe. I guess my immune system is a bit off thanks to all the events of the past year.
So, that’s all the bad stuff, but some good has come out of this too. My faith in God has deepened. I am more compassionate, and subsequently kinder because I’ve been through a hard thing. I appreciate time with my family even more than I did before. I’m a better self-advocate. And I think I let tiny annoyances and worries roll off me with less fuss than I did before.
Being able to access this website made a huge difference to me. I found valuable information and advice. I had so many questions and reading through all the posts gave me answers that I didn’t get anywhere else. All the information I found here helped me ask better, more focused questions when I went to the doctor. Thanks to Sara for her vision and perseverance on behalf of all of us, and thanks to everyone else who shares their experience and extends their support! I’m wishing good health and peace of mind to you all.
I’m so grateful for this group. I am now six months post-PE and just met with the cardiothoracic team – a consultant in respiratory medicine and a haemotologist – and told that recovery takes six months. Yet I seem to be taking two steps forward, one step back. On Thursday and Friday I put in 9 hour days at work – long teaching hours on my feet on one of the days – and spent most of the weekend in bed. Yesterday I left work at 4, was asleep by 5, slept 4 hours, awake for 3, asleep again for 9. If it weren’t for this group, I would be terrified. As it is, the doctors keep suggesting that it could be something else so I keep having blood tests for thyroid problems, etc. I get the feeling that they don’t actually know what they are talking about! I just plugging along – and trying to get as much gentle exercise as I can, yoga and swimming, to help build stamina.
This blog is absolutely amazing. Thank you you. In 2012 I was diagnosed with pulmonary embolism. I had noticed at times after brushing my teeth I’d spit blood and randomly coughed blood also. My back started being so painful and I had chest pains. My Gp gave me something for a chest infection and I thought all would be good. That was on a Wednesday. Come Saturday my back pain was unbearable and drove to ER. They have me a pain drip and sent me home. Sunday late pain came back and I went back to er and demanded help. I was 26, with 2 kids. Never been on any contraception. The clot was on both my lungs, I was lucky to be alive. My physician wasn’t so good at explaining what was going on with me, I found comfort in Google. Fast forward to 2015, my new friendly physician doesn’t believe all was done properly. He’s taken me off warferin for 6 weeks and I’ll go for more tests to check if I’m clear or not. My only concern now is that I’ve been off the thinners for almost 2 weeks now, I feel like I have some back pain. It’s not throbbing pain but more an irritation. Could this be a relapse maybe. I don’t know whether I should panic and call the doctor. I’ve had a scare before when I thought I saw blood in my cough, but the doc explained that the blood will be red and fresh not dark and dull. In the mucus. I’m starting to panic because of this back discomfort. Has anyone felt something of this nature?
I’m currently going through chemo and during a routine scan they found a clot in my lung. I have no symptoms and have been on blood thinners for a couple months for clot in my leg….my doc said “I’m not worried about it” and sent me on my way….we’ll I AM worried…just looking for what to expect…living in fear now.
Thks for your site…..I’ve found it interesting.
I’m a distance runner of some thirty yrs….a non smoker…non drinker…slim…fit with no previous health concerns…..A good runner with A1 health.
I was rushed into hospital 10days ago with two big blood clots (A PE) I was told….a DVT in my right calf….
Still not sure when I’m able to exercise normally again….shortness of breath has massively disappeared……
Perhaps foolishly I’ve been out on my mountain bike…..but I felt fine…..and was careful…..I’m on a blood thinning tablet Xarelto.
Blood pressure has been low…..heart rate lower than in the last WK or so….
Doctors appointments tomorrow with hospital visits to follow.
Advice welcomed.
Hi everyone June 1st was a big day for me exactly 6 months since i was discharged from a week in hospital following a very large saddle PE. I was so ill and so low there were times i did not think i would make it but here i am. I had the results of my echocardio last week and delighted that my heart has not been damaged by the blood clot. At the end of June i go to the respiratory clinic to find out what the clot is like now. It has been a long and painful journey and i thank God that i am still here. Yes i still have bad days when i feel very low and get regular cheat pain which frightens me but i listen to my body and rest. I live in the now take nothing and nobody for granted and try to live my life in love not fear. To all of you going through this awful experience take one day at a time do not let others tell you how you should or should not be feeling we all cope in our own ways and you will heal. Love and hugs debs
Hi lovely lady.
Thank you for your words of comfort, it helps so much to know that we are not alone. I am amazed to see that we all feel down now and then, and make me feel more ‘normal’. I am also concern of the lack of support and interest in the GPs who are meant to follow us. I wrote to my GP who is just back from a long leave, and asked him if he could get the two w-rays from the hospital I was treated, so that he can show me the blood clots in my lungs, as I really want to know how many I have got, and where they are. furthermore, I would like to know when they are luckily to dissolve. I wrote to him almost 2 weeks ago, and so far, nothing!? Not even a word telling me that he has got my letter, and he will deal with it when he has got time! This is depressing me even more! Have I said something wrong, or, am I just not worth the reply?! Must say that I was 3 weeks in hospital, and was told that I have got PE, and extensive blood clot from the knee to the common iliac vein. I had a lengthy thrombolysis for 22 hours, where I was plugged to many machines, and although my left side is free from clots, I still feel very weak and vulnerable. My lower back is hurting, and affecting my walking. I also have very painful pins and needles in my little finger and my ring finger, so that I can not write properly, as, I cant lay my little finger on the table. I am 65 years old, and taking Rivaroxaban every day. I must say that the surgeon who inserted the thrombolysis was so kind, and so careful with my care, the nurses also were very kind. Anyway, we belong to the same family, and hopefully the weather is going to be kind enough so that we can spend some time outdoors. Hang on there, you are not alone, and I am sure we will make it! We made it so far……..
MC
Hi MC you are so welcome. Gosh you have been through a lot and still so brave. I too am on daily Rivaroxaban i am 54 yrs old. Keep going forwards at your own pace and let me know how you are getting on. Love and hugs deb
Will do, I have an appointment with my doctor at last on the 26th June 15, he does nor know what he is opening himself to!!!! Got a long list of questions……. Will let you know What I have succeeded to learn!!!! Love, MC PS: I am not brave at all!
Hi Mc i a lucky as i have support from my GP they even phoned me while i was still in hospital to see how i am dont know who was more shocked me or my GP that i had large pe with more clots in both lungs with main clot at trunk of lungs and dvt in my right leg still , ive got to go for echo on my heart and breast screening in a few weeks time , im on Rivaroxaban medication , can you see another GP if your isnt supporting you at all and yes you are brave women , hope you get answers from your GP ive a follow up at my GPs and have a list of questions for them too .
wishing you all the best on your recovery , xxx debbie
Had a clot in my right lung. 5 nights in the hospital, could only take 3 steps before resting at the beginning . 6 weeks off of work. I’ve been back to work (desk job), for 2 weeks. Have been walking , have been off oxygen for 5 weeks , and not had any problems. Today , O2 levels have been back to 89-93. Feel I might need O2 tonight. Has it happened to anyone to else ?
Hi guy I was told weather can affect your breathing. I was diagnosed on June 25th this year . Didn’t have oxygen while in hospital but I am finding hard to breath at times when it is warm
Hi everyone
My name is sara from south Africa.
Here is my story.
I have been feeling out of breath for about 5 weeks now, I was changing jobs and assumed it was anxiety, also I had been taking the pill for 3 months.
After I left my job we went fishing as I still had 4 days before the new job started.
I woke up the 2nd morning of fishing and I felt as if someone had kicked my back and chest, I called my mom in law, who is a nurse and told her I think my lung collapsed. She calmed me down and told me it was probably bronchitis. So I carried on , in pain for the next week , breathing was so challenging and any work was just exhausting. My father tiered of hearing me cough on the phone came to fetch me one night, hubby was working night shift. We went to the emergency rooms, the dr. Heard all my moaning and coughing , he did an X ray, only to tell me that there is absolutely nothing wrong with me, I was shocked, I wasn’t making this up. This was also an expensive Visit.he booked me off next day and I took pain killers. On my way to work the next day, sitting in traffic I cough so much I literally vomit everything inside me! So I called my new boss ( whom I have worked for 1 week!!) Telling her that I am not coming in, my father again decided to take me to my GP, we fetched X rays and the GP to our shock tells me, that my right diaphram is 3x larger and my ribs are being forced together, so he puts me on these horrible antibiotics and books me off, still not feeling better on monday I get sent to the hospital I literally cannot walk, the government hospitals are so disgusting here it took us 6 hours to see a Dr. He did an e.c.g and another xray and I asked him, no clots and he said no, he told me I had pneumonia, finally I thought an answer to my problems!!! I was down for a week and a half on strong antibiotics, my husband worried as hell could do nothing but watch me suffer, sweat all night, crazy fevers, moaning with pain. It was now 2 weeks that I had been booked off, and I wasn’t any better, yes the lower rib wasn’t in pain but I felt like I was being stood on constantly on my chest, breathing was a chore! I went to wrk because I was suppose to be better. Needless to say I passed out at work from doing the smallest task, and was home within the hour. The next day I went to a specialist who my mom in law is friends with, hubby took me , they did all kinds of tests on my lungs, and bloods , also a CT scan . To find out that I have a DVT on the right leg ( never caused me any pain) and multiple pulmonary embolisms, also my right lung was collapsing , I only have 60% capacity and there is fluid on my right lung. LOVELY. Because we cannot afford to be admitted, I was on bed rest and clexane ( injectables) aswel as warfrin, we also found out it was probably the pill that caused it and also that I will be on anticoagulants for ever as I have a hereditary blood clotting condition. it’s been almost 1 week , I feel useless,depressed, tiered. I wish I could go to wrk to make money to pay these bills but I physically cannot work! My Husband has been amazing, he administers all my injections and medications , I am blessed to have him, my dogs 3 chihuahuas arw always by my side, they know im not well.Just wish I was strong for even the small tasks, like cooking! I just wanna get better, I feel like I have been sick for ever! Thank you for reading my long story. This site is very inspiring! Xx sara
Hi I came across this site as of June 24th when I was taken in to hospital because of shortness of breath slight chest pain and swelling and pain in my right leg . It happens 2 days into my holiday . Before that I had a bit of breathlessness a few weeks before and chest pains which I thought was heartburn. After having a blood test D demi was told it was off scale 8.8 apparantly . Next thing I’m back at A&E been asked loads of questions family history and told I could have a dvt or pulmonary embolism. I’m then given blood thinner injection taken up to main hospital as at minor injuries before . Again in A&E asked symptoms when doctor says possible dvt or pe I’m sat thinking what the heck this can’t be happening to me. I was admitted on June 24th on 25th June had a ct scan . Results came back I have large Pulmonary Embolisms in lung and more clots in both lungs also still have dvt . I was told if I hadn’t gone to hospital when I had I wouldn’t be here now. I had to be in hospital till I was stabilised . I was put on warfrin at first then changed to Rivaroxaban as my blood was thining . I asked doctors why has it happened was I not active enough? Doctors said sadly due to family history it was on cards for me as I am 4th person in family to have this . I am now just coming up to my 1st month of recovery still get leg pain shortness of breath when do too much . I’ve been through every emotion just about this last month and now on road to recovery though it be slow I’ve still hot to have heart echo and breast screening in August to see if any damage to my heart or anythings underlining illness. If there is then i will deal with it ,I was wondering how long for recovery but each person is different so how long is a piece of string. I take one day at a time that’s all I can do .
i forgot to mention that i had leg pain at the start of june this year with chest pain and shortness of breath again i ignored it till my leg was so painfull and swollen, while i was in A&E a rash started to appear on my lower half of my right leg, i was told there and then it is a classic sign or either a dvt or pe , which scared the life our of me as i keot thinking all the time i was in A&E they have gotten it all wrong , i now think why was nurses looking at me in a way , i was told that if i had not gone to hospital that night i would not be here , i have been depressed , anger , even hate my body for what has happened to me as this is a major life illness that has happened to me , after i was told i had pe doctors explained next 48 hours where crucial for me lucky enough i didn’t take a turn for the worse , i was allowed home after 5 days in hospital on warfrin and cloxean injections the following week i was taken off warfrin by doctor at hospital as my INR had not changed and they woud have to increase dosage to get blood to thin , after initial first 24 hours with a headache which i was told would happen with new medication , i dont have blood taken or INR tests with new medication , which still worries me as my farther had a pe in his 40s , my aunt has had 2 pe last one was 2012 , as now i am 4th member in family to have this, i have more scans as doctors want to check my heart , im also being screened for breast cancer next month , i have a review in 2 months at thrombosis clinic and my children will more than likely be screened to see if they are at risk of dvt or pe . i am not good at writing blogs but if anyone wants to comment i will reply , its scary i know i was in denial that it was happening to me till i had ct scan then had to face this is very serious it could have killed me , i am now allowed to go for a walk and make myself a drink or something to eat , i cant bend too much as my chest hurts and i get breathless , i have asked my GP and hospital doctors loads of questions so i say this to anyone whos just been diagnosed don’t be afraid to ask questions , yes i am scared that it could happen again to me ,being diagnosed with dvt and large pe with more clots in both lungs has also impacted on my family in more ways that ever , i was the one who did everything for everyone and now my daughters see me struggling to breath even talk at times and have to ask for help which does not sit well with me as i am an active person , life is precious i have been given a second chance and i intend to enjoy it with a few lifestyle changes , one i no long drink alcohol not that i drank much i would be classed a social drinker one or two drinks a week if that .
Now i am coming up to a moth since being diagnosed , how do i feel tired , breathing getting better unless i do too much but mainly GLAD TO BE ALIVE .
debbie
I am so happy I found this website.On June 28 2015 I suffered a Saddle PE in my lungs.One week prior to my attack I was feeling pain to the back of my right knee.I dismissed it since I also suffer from Gout.I was rushed to the ER and was give Clexane and then Wafarin .My PT/INR levels is fluctuating and the dose is being changed weekly to attain a reading of 2-3.Dont feel any pains just tired sometimes.I would like to know how long will it be before things get better.
Thanks
Persad.
I had been short of breath for some time but not bad. On May 28th I was going into work and almost passed out going in. Once I got to my department with some help, my supervisor and co-workers (who are almost all nurses-I work in the coding department of a medical facility) said this was not normal and sent me over to my Dr. at our main building. By this time I was in a wheelchair and could not hardly walk at all. My CT showed a saddle embolism in the upper, middle, and lower branches of my right lung were almost completely occluded with only a small amount of blood passing. The upper and lower branches were similarly occluded again with some blood flow around the emboli. According to the three doctors I saw the first day, I would have died if untreated within the next 24 hours. After 5 days in the hospital on Lovenox, I came home on Xarelto. One month later I returned to work. I am wondering if I am pushing myself too much. I sit at a desk and get up and move at least once an hour, but still am having swelling in my legs. Also I have noticed my brain seems to be processing things slower than before. Things I could whip thru, I have to stop and think about for a minute. I have also noticed mixing up my words a lot when I get busy or stressed. I am going to discuss this with my doctor Tuesday. I only work 6.5 hours a day, but come home exhausted. I know recovery can take up to two years before I feel like myself and am wondering if feeling like this after going back to work is normal. I am now two months out from the event. Thanks!
Hi. My name is Lee and I was diagnosed with PE 6 days ago. I was fit and healthy and then all of a sudden after walking upstairs I came over dizzy and extremely short of breath. After 2 days in hospital and injections I am now on Warfarin. I have been told of the 6 months recovery, foods to avoid and alcohol, however they can not tell me how it came about. I have not slept awkward been on a long journey or taken up yoga!!!! My question is could my recent change in job have been the cause. I was working as a cook for 13 years so on my feet and very active but never had a problem. I changed jobs 4 months ago and now work in a factory. I stand all day but am now lifting heavy cardboard from a stack and loading into a machine. I can do this for an 8 hour shift. It is hard graft but I have never struggled doing it. I had some holidays due so decided to take 2 weeks off. I had been relaxing at home for 4 days when my symptoms came on all of a sudden. My question is could my job of been the cause and was it only when I took some days off that it happened. My consultant does not know. Has anyone any views that may help.
Hi Lee I was diagnosed 25th June this year with dvt in my right leg and large pe I’m both my lungs . Like you I had a job change and asked doctors if that was cause of my dvt and pe doctor said no it wasn’t as learning my family’s health history I am 4th person to have dvt and pe mine sadly was waiting to happen , Have doctors asked you for family history incase anyone else has had a pe . I was on warfrin for a week then dvt clinic changed me to rivaroxaban I can eat what I want but advised little or no alcohol, I’m just into 1 month it’s slow recovery buy I’ll get there still have to go for breast screening and heart ultrasound in case there is anything underlining to why I suddenly had a dvt and pe but more than likely it’s hereditary . I wish you well in your recovery 🙂
Thanks Debbie. I was asked about my family. Nobody has ever had anything remotely like what has happened, this is why they are unsure as to the cause. I travel over an hour a day by car to get to work and an hour back, so this coupled with the job change is the only major reason I can see as to why it happened. Well I am just coming up to a week on the warfarin so the hospital is still checking my blood every other day so we will see how we go. It is nice to speak to others with this condition as at first it was very frightening. Thanks again ☺
Your welcome Lee ☺, it is frightening I know I was terrified when given news think any one would be. Are you at home or still in hospital . It can take a few weeks for blood start thining that’s what I was told at dvt clinic hence they took me off warfrin after a week on warfrin and injections as my INR count was still 1 and should be between 2-3 . Again doctors don’t know why mine happened and think they putting down to hereditary. Your welcome Lee ☺ .
I’m back home now Debbie. My first count was 1.1 that was when I was on 10mg. On Monday I got it to 2.3 so went down to 6mg and today it was 3 so I am now taking 5mg. I also had an abdomen scan as they were worried about my liver and kidneys but thankfully that came back negative. Had one more blood test today so will get those results back when I go back on Friday. It seems like my second home at the moment. Anyway will see what Friday brings. Thanks for the chat Debbie. Makes things a little easier to deal with
Your welcome Lee glad everything’s ok keeping fingers crossed for Friday for you ,its certainly a life change that’s happened to us . Take things steady . My ultrasound is on 13th August hoping everything is alright with my heart.
Hi…..I’m just home from hospital after bi-lateral PEs. I had bn feeling tired an anxious for about two months and my GP was treating me for depression since my brother just died. The last week I started getting breathless…..thought I was having panic attacks in fact. Then I was advised to see GP……I drove there and my lips were blue. I was exhausted before hospital, and I have low endurance since I came home two days ago. I really hope I can start to function reasonably well in the next few weeks. I actually walked into hospital and PEs were very tiny. Can I expect improvement soon do you think? Iris (please give me reassurance)
Hi all,
I was recently in a car accident which led to my left leg being placed in a cast. This then resulted in a BPE unbeknown to anyone. After 4/days of feeling unwell and short of breath I was persuaded to go to hospital. After some tests and a CT I was diagnosed. We were talked through the possibility of having clots on my lungs from having a DVT although no one mentioned to me the strain on my heart. This came as quite a shock to me, I’m only 31 and otherwise fit and healthy. The I was a week in hospital and was informed had I been another 24/48 hours later I may of had heart failure due to the pressure my heart was under.
I am dealing daily with occasional breathlessness and lye awake on a night wondering what could of been. I’m fairly certain my temperament has altered, I’m finding myself more irritable then I was and quick to snap. Is it fair of me to use my I’ll health as an excuse? I don’t think so. I’m really struggling with not being allowed to perform tasks I have done all my life. Go for a job, bike ride, go to the gym or play football. I’m struggling with not being able to do what I’m used to doing, no one will let me. I’m sure I can do these things again, or I’d at least like the chance to try. Personally I am finding this the most challenging part of my recovery. Not being able to go back to how I was. It has only been a month and surely things will get better. This thing almost cost me my life, almost ruined my wedding and stopped us going on honeymoon. I don’t want to let it take anything else. It’s so frustrating but reading everyone’s posts does help
Hi mark I know how you feel not able to do much right now . I find my memory’s gotten worse since being diagnosed June 25th this year with dvt in right leg and pe in both lungs ,yes it’s scary when they ask you to go for more tests I was like what else do you want to throw at me ? I feel frustrated and molly coddled as my family won’t let me do much . Mood swings too. I look at this way I’m still here one of a few lucky to survive and will do my best to make it aware about dvt and pe . Like you it nearly killed me so now live been given second chance at life. Everyone heals differently . It’s a major illness you’ve had its going take a few months to recover . All best on your recovery
hi Mark…..I really do understand your frustration. Even though I’m 68, I too want to get on with my life because I’ve always been very active. It’s believed that my emboli had been gathering for a while, and for the last two months I seemed to sink into a state if bewilderment, with anxious feelings…..I wasn’t functioning properly, always tired and lost interest in hobbies. My GP was treating me for depression. Even when I got breathless, I thought I was having panic attacks. Now I am sort of functioning but still feel immense fatigue, and I know every afternoon quiz show on TV. I don’t know whether or not I should be driving, at the moment I don’t feel strong enough. I don’t think this has actually scared me……I’m finding it a nuisance to be poorly, more than anything else! Iris Walls
Hi all,
Thank you to those who have taken the time to share their personal experiences. It is assuring that I aren’t the only one who feels like this. I have made an appointment to see my Dr tomorrow. I am hoping he will convince my wife that I should at least try to exercise again, after all he’s allowing me to go back to work next Monday. This will hopefully stop people “molly coddling me” (love that phrase it sums it up exactly).
I don’t however underestimate how serious this has been and believe that the people around me have been affected by it the most, this is totally understandable as I’d be as worried for them as they have been for me. I will make sure to listen to my body and not push myself too quickly. I am using this goal to give me something to strive towards.
I sincerely hope everyone who has been affected by a DVT OR PE all the best and hoping you’re all able to go forwards with life as you would like.
I’ve just realised this is an American website.
I am from HULL, England.
Just thought I’d let you know how far your advice, experiences and well wishes have travelled
hi Mark, well done you! Take it easy though please. How long is it since you were diagnosed and how big were your clots? It’s 12 days since my diagnosis and I’ve just had a walk along my street (100 x 2metre). My legs felt so very weak, but I was on bed rest for six days with oxygen. I had lots of tiny clots on both lungs. Please keep in touch, and most of all…..good luck xxx
Iris
Hi Mark……..I’m from Jarrow! Near Newcastle. Iris
You are doing very well if this only happened a month ago
Hi Mark glad you like phrase ☺ like you I want to go to gym or swimming but have been told it’s too soon as for work I’m not allowed still . Keep your chin up take it steady . I’m from Oxfordshire it doesn’t matter if this site is American or British . (No offence to anyone is meant) I am glad it’s here for all . Good luck in recovery
Car accident was on the 4th July I was diagnosed on the 12th. A week in hospital was horrendous. I have extreme phobia over injections, had to meet that head on. Mental torture that was.
The Dr advised the clots were ‘massive’ but didn’t state a size. He said owing to the size and how close they were to my heart the pressure it was under was great. I haven’t really pressed for full clarification although it would be nice to know the full extent of what was going on
Hi all I was diagnosed with dvt in right leg and large Pulmonary Embolisms in both lungs 6 weeks ago I have swelling in right leg which had dvt in but now my left leg has started swelling up . Thrombosis clinic says it is normal but I’m not so sure . Just wondering if anyone else is having same problem as me. I wish everyone all the best in recovery .❤
Hi Debbie, so sorry to hear about your experience. I’ve had bilateral PEs too, but nobody knows how they developed. How are you doing with your fatigue six weeks on? Mine were building up slowly for a while, so I was tired before diagnosis. Keep in touch please Debbie.
Iris
Debbie…….do you find your fatigue bewildering and frustrating?
Iris
Hi Iris im coping with it as for dvt and pe I had no idea I had them . I’d been suffering chest pain and shortness of breath few weeks before and a bit of leg pain but i ignored it. Till nearly too late. I’m still coming to terms with it . I’m 47 iris . Got heart ultrasound on Thursday to see if any damage to heart. Don’t think doctors will ever tell us full extent of it all probably don’t want to scare us to death lol.
My advice listen to your body iris and you to mark. Take it steady your body needs to heal as it’s recovering from life threatening illness . I’m trying to get appointment for gp this week . Keep in touch .
Debbie ☺☺
Hi Debbie, I’m 68, and used to do two hours of Zumba a week. My doc had been treating me for anxiety/depression for ten weeks because I felt shaky/tired/weak (sound similar to PE?), just the way I do now. How long have you been diagnosed, and what are you able to do now? Iris
Hi Iris I was diagnosed 25th June . Does sound familiar shaky . Tired etc . Wasn’t suffering from depression though I was off work with carpal tunnel . I’m a carer by profession . I do light housework can cook a meal now . Hoovering is a big nope hurts my chest . Did stupid thing few weeks back tried clean bath out felt like I was having heart attack. To pass time I read knit watch movies. Go for walks . Xx
Hi Debbie, did you feel mentally drained too? I drove my car yesterday for two miles……my head feels like I had a hangover without the alcohol. I’ve had a short walk along my street today. I feel so very unreal. I live alone so have to cook for myself, but quick meals like stir fries, salmon in an oven bag with microwave steamed veg, or I buy a cooked chicken/salad, gammon/eggs. I allow myself two glasses of wine per night. This is all so very frustrating. Iris x
Hi Iris I’ve not driven since last November as not been able to grip and won’t risk my life or any other road user . I have given up drinking alcohol. Just not worth risk as your only allowed 2 units . Should you be driving so soon ? I know how you feel with walks . Is there any neighbour that can help you or family ??but ready meals are a blessing easy to do . Xx
Hi Debbie, the warfarin guide allows 2 units. Debbie, do you also feel mentally debilitated/tired? Iris
Hi Iris I know it does I was on warfrin but thrombosis clinic put me on Rivaroxaban after 1st week as my blood thining quick enough . I’m tired full stop iris but I keep going I’ve 2 daughter’s and 2 grandaughters who mean the world to me .just got my follow up appointment for thrombosis clinic October I go back .
Keep in touch please Debbie…….I need a Nanna nap!
And you to iris I’ve managed to get doctors appointment today get left leg checked xx
I will keep my fingers crossed for you Debbie…..I just got to sleep and my phone rang! Typical
Bless ya have a nice nap chat later xx
hi Debbie, I gave found myself doing much more today……hope I haven’t tired myself out for tomorrow. Got a fuzzy head…..don’t know whether it’s part of the tiredness, but will try some fresh air tomorrow. Iris
Hi Iris that’s good but take it steady but I know what you mean with fuzziness I was like that to start off with . My breathing alot better now finally bur find warm weather I struggle to breath. Doctors say they don’t think it’s a dvt in left leg but I’ve got keep an eye on it and ic it turned out to be a dvt nothing they need to do as already on blood thinners. Iris are getting heartburn or indegestion ?? I’ve been suffering with it for awhile git to go for blood test this week . I enjoyed been out in fresh air today . Take it steady don’t push yourself iris xc
Good morning Debbie, no I don’t get indigestion or heartburn. I find I’m very low on energy and a bit down because of it all. My limbs are quite weak, weaker than before I was diagnosed. I want to strengthen them, and I’ve read that doing simple tasks around the house counts as exercise at this stage. I want to get out in fresh air to see if it clears my head, but tbh I sleep with my bedroom window open. Lets see what today brings eh? Still in bed at 0920!! Iris
Morning Iris how are you today ? My strength is coming back week by week . I’m better that I was last week. To answer all your questions shopping wise I don’t go alone for food shopping as at times I still feel like a pull in my chest when lifting bags . Doctors appointments until this week some one has gone with me . I’ve got hospital this Thursday morning which I’m going to alone . I had a bad night sleep last night indegestion and heartburn .xx
Debbie, are you managing to get to your doc appointments on your own?
Iris x
debbie, 07816544377
Debbie, how do you feel now regarding your strength compared to when you first came home from hospital? Do you manage your own shopping/hospital appointments yourself? Iris
I have a DVP which was brought on by blunt force trauma in an assault. My body feels like it is dealing with havoc and my medical advice was not very explicit. I was under the impression that six weeks of Xarelto would cure me, WOW – I guess I was sadly mislead.
I returned to work one month after having a severe saddle embolism. I stay tired, the filter in my leg often hurts when I sit too long (I do get up often to move my legs though), and I generally feel bad. My doctor just keeps telling me to do what I feel like I can. To be honest, I don’t feel like I should be doing half of what I am doing. I also find I get confused easily now, and things are slower to process. I have considered quitting or trying for disability thru work, but I keep hoping it will get better. It has been 2.5 months now and so far not much has changed. Is this normal?
hello Lisa, maybe you are pushing yourself too much? Iris
It’s difficult when you have a decent job to give it up especially when the doctor, family, and your job, all seem to think you should be up and doing great. They seem to understand when I say I don’t feel good and need to lay down, even my doctor said this could take up to two years to feel better although I will never get off the Xarelto. Even he just keeps saying you’re doing great keep pushing forward.
Hi Lisa, I know people want to encourage you to get back to normal, but if you need to rest, that’s what you must do! Can your employer allow you to work part time?
Iris
I only work 32 hours a week now and they won’t let me go any lower. Also has anyone else noticed their thought process being slower I guess is the best way to put it?I can still do my job and things at home I just have to think about them more than I used to.
Yes Lisa, I spoke to my doc yesterday about it, and he says that when your body is feeling weak/tired, your brain probably feels the same. I cannot concentrate much on watching TV. Iris
Thanks Iris, it at least makes me feel better to know this is normal.
lisa, I’m assuming that it’s all part of the fatigue you feel while in recovery
Iris
Hi, a little over a month out from my scare. Was diagnosed with a massive bilateral Saddle PE, almost completely occluded and several smaller branch clots. In addition, a large DVT. As others, I was told I am very lucky. That really hasn’t phased me yet, but I am sure it will.
The week prior to me being diagnosed I was feeling unwell. Low grade fever, headache, and cough. I complained of some shortness of breath (SOB), but thought it was from the hot weather. Yes, I was in denial about my symptoms! Two days prior to me finally going to the doctor I went for a ride on my road bike. I struggled to just finish 10 miles. Hindsight 20/20, but I can’t believe I didn’t go into cardiac arrest.
By the time I finally went to the doctors, my chief complaint was excessive sweating, some SOB, and horrible calf pain. The only reason I went was because I thought I tore a calf muscle! The PA briefly spoke with me and had an ambulance come pick me up. After I discharged from the hospital I went and spoke with him. He agreed that I didn’t present like a PE, but he had a bad feeling. Thank goodness he listened to his “gut.”
I am 32 y.o., in decent health, and exercise regularly. I was in the hospital for 9 days, only needed oxygen at night. By day 2 in the hospital I took a turn for the worse. I could barely walk 10ft without my pulse and blood pressure getting extremely high. The highest I saw was 190 bpm and 190/150. My heart took the brunt of the clot damage and I had severe clot burden. My ECHO showed I had right ventricle (RV) enlargement. In addition, I was having arrthymias. It was decided that we needed to reduce the clot burden so I had a catheterization from groin to lungs and they dripped TPA (thromboectomy). After the procedure I could walk about 70ft.
After the hospitalization I had a home physical therapist come to my house for 4 weeks, monitor my heart while we walked. They put me on Xarlto, which DID NOT work. I have actually heard this from other PE survivors too. I developed a new DVT 3 wks post-D/C. I am now on a beta blocker for my heart and we switched my blood thinner meds. New meds were a Lovenox bridge to Coumadin. Actually, like Coumadin a lot more and getting my INRs checked adds to my piece of mind.
I am hoping to start Pulmonary Rehab in the next week. If i can survive that I can get back to riding.
I experience some fatigue. I am tired, but I don’t think much of it. I notice SOB here and there. I have had some unusual things happen, but I blame it on my heart. Two days after I D/C from hospital I was doing some light yard work and had horrible shooting/throbbing pain behind both my ears. Had an emergency head CT scan and that was normal. This has happened during 2 other occasions and we have determined it’s from a fast rise in my blood pressure. I also, have pressure pain, left side behind sternum. This pain only happens when I bend over. May be new clot burden or just residual pain, seeing my cardiologist Wed.
Like most I do have anxiety with this. I work in the medical field and well aware of what could have happened to me. I am definitely hyper vigilant about every new pain or symptom, which I personally find annoying. But, I know I need to listen to my body.
They are saying this a provoked clot: traveling and estrogen birth control
Last week, I went to the doctor for a rash and they ran blood test and the results came back high. They informed me i need to go to the ER right away i might have a blood clot in my lung. I had no pain or anything before going. When i get there they did a ct scan. I had a blood clot on my lungs. They admit me over night and went home the next day after taking some meds and a shot in the stomach. Is it normal to be sent home one day after finding it. They never explained that i would get these coughing spells were i want to throw up, no nights sleep, cough up blood clots every morning, I couldn’t even walk for 3 days after. They don;t explain the pain that comes with this condition. Can anyone tell me if this is what happened to them as well. How long will i continue to cough up blood clots?
How are you doing now? I had a saddle PE Christmas eve and was diagnosed with a second PE 2 1/2 weeks ago because I was coughing up blood. Unfortunately, I still am, every.single.morning. and every afternoon, I am running a fever. My chest is still uncomfortable and tight, more so since I left the hospital, and if it’s up to my cardiologist, I’d be back at work next week. 🙁
Thanks for all of your information and encouraging words. I was diagnosed with a PE in my right chest cavity on Sept 17, 2015. I am so nervous right now, the Dr. talked with me for 10 min about my embolism, he prescribed xarelto for 6 months and released me from the hospital. I feel as if I am in an alternate universe. I am having pain in my chest, and wondering if it is the side effects of xarelto or something else. I am confused, but grateful to have found a group of survivors who can relate.
Hi Charles, about a month ago I was having heaviness in my chest, shortness of breath and racing pulse, I thought it was panic attacks. Then the piercing pain came a few days later, I went to my doc whom happens to be a Cardiologist. She ordered an immediate CT scan, where they found a small PE in left lung. Started immediately 3 weeks of 15mgs. Xeralto. I was in total shock over the whole ordeal and I had the same question, “Is it the PE or the Xeralto?). It’s both, come to find out. The first 3 weeks I’ve had terrible headaches, cannot keep a straight thought in my head, severe depression, extremely lethargic. I’m now on week 4 on Xeralto (BTW $235.00 month as my insurance only takes generic). I’m feeling less lethargic but still not much energy, slight chest pains, I’ve had to give up drinking completely, which totally sucks! I’m really going to miss my wine and culinary club, I miss My evening few glasses of wine whilst cooking dinner. I feel terribly hung over (without the booze), pounding headaches and no energy. Xeralto claims that patients on Xeralto CAN take two drinks max. per day FALSE! Xeralto is a new drug, who knows what long term side effects will be. I must stay on this crap for at least six months. Waiting to hear back about all my blood panels and cancer testing (cancer can cause clots). Im considering changing to a different drug…they all sound terrible.
I experienced bilateral pulmonary embolism one week after I had a minor back surgery to remove a cyst that was causing me unbearable leg pain. I am an RN and knew when I started to have pain when exhaling I probably had a PE. I never could imagine what would follow. After 10 days in the hospital on a heparin drip, 4 being in the ICU and almost coding on the floor and rushed back to ICU, all my doctors encouraged me to go home on Xeralto. Which I did and my primary MD had to fight for my insurance to cover. It has been 1 months and I still am so tired. Doing anything during the day leaves me on the couch the next day. I am still experiencing episodes of gasping throughout the day. Whenever I ask questions at my follow up appointments, the response I get is ” do not worry about it , you are alive and that is what matters”. I am scheduled for a stress test at the month to assess the damage on my heart. My primary MD does not want me to return to work for a least another 2 months. I was wondering if anyone has tried going back to work with at reduced schedule? I know I could not work three 12 shift but I miss working.
I am 23 years old, my name is Kelsie and I was diagnosed with the same clotting disorder antiphosolipid syndrome when I was 15. In July I needed a wisdom tooth removed, and was off of my coumadin for a little over 2 weeks. Towards the end of July I started to feel extremely tired and just moody and irritated. I had a appointment with a new primary care physician and at the appointment my heart rate and blood pressure was extremely abnormal. Even 15 minutes into the appointment vitals still elevated. I had no other symptoms except tiredness…and one night of back pain. I have had PE before, when I was younger and irresponsible with my medicine and health. I almost knew right away that a PE was a possibility. I was sent straight to the hospital for labs and a cat scan. Turns out I had multiple clots in both lungs. I spent 4 days in the hospital, and was released with instructions to use at home oxygen while sleeping and doing strenuous activity. Here I am almost 2 months later and I am so ready to feel normal. I live in a upstairs appartment and it takes everything I have to climb them to get into my house. My boyfriend complains because I can literally sleep all day. Some days I just feel so crummy that don’t even want to get out of bed. The coughing up the blood only lasted about a month, but the shortness of breath and the fatigue hasn’t changed. I just wish someone around me could understand how hard it is for me to comple simple every day tasks. Trying to make dinner, walking across my apartment just to go to the bathroom, checking the mail all seem like gruesome tasks. My past experiences never seemed this bad…Although I know it could be worse. I loved reading everyone else’s journeys on here…it feels comforting. To have so many people who can really understand your circumstances.
hi Kelsie, my heart goes out to you and I do wish you a full recovery. I was diagnosed at the end of July. I thought I was having panic attacks: I was already in depression following my only brothers death when this happened. Fortunately I am now much better. I suggest your boyfriend should be more understanding towards you, and give you more practical and emotional support. I wouldn’t have known how this illness feels without experiencing it. Meanwhile do keep in touch with your primary care provider…….friends and family can give you support, but if you are ever in doubt, you do need to speak to your medics. Good luck. Iris Walls
I’ve had a saddle clot in Oct 2014. Thankfully I have pretty much returned to a full very active life within several weeks and have been for the last several months. Although I’ve had some weight gain and cannot seem to shake it off even though I have a pretty aggressive training routine. My issue is, however, I feel chest discomfort off and on. It’s not pain. It’s not squeezing. Just discomfort. It comes and goes with no apparent pattern. I can feel it from my solarplex to sometimes up to the btm of my throat. Could this be left over scarring? I also have a hiatal hernia. My doctors have not been to concerned with this. My CT Scans are clean. All blood tests are good. Pulse and BP are excellent. Any thoughts?
Hello, firstly I’m so pleased you are a survivor!!! I was diagnosed late July this year, and since then I too have had an ache just above the solar plexus, but only when I lie on my side in bed. I’ve always thought of it as being a bit of inflammation that needs to settle. If your med team aren’t concerned, then do try to stop being concerned. I wish you good health and strength. Iris
I developed acid reflux during my PE ordeal. It can cause chest discomfort and an unpleasant sensation in the throat. I’ve always wondered if it had something to do with the Xarelto that I took because the symptoms started to develop about three weeks after I started taking it. You also mentioned that you have a hiatal hernia and I think it can cause those symptoms too. Might be something to discuss with your doctor. I take prescription medication for my acid reflux and it helps.
I had a massive saddle PE and spent 12 days in the ICU; 8 of them on a vent. One of the things they did then and have continued to recommend is an Echocardiogram. It is possible your heart suffered some damage and that is what you are feeling. I would definitely talk to your Dr. and see what they recommend. I am happy to hear you are feeling well overall. I am very much looking forward to that day!
In case this is helpful to others, I offer my history. After a surgery while on Yaz (BC) I had major and superficial blood clots in both legs and numerous pulmonary emboli (PE). My only symptom post surgery was profound tiredness. At post op I was told I needed to go to ER for suspected blood clots. I did so and got a further clot in my arm due to a poor catheter placed in ER. I received ultrasound of my legs and a CT scan of my chest. All of the clots were identified. I was admitted to ICU and spent a week there on heparin. I received excellent care in ICU. I continued treatment with the hematologist on my ICU team for two years. First with Lovenox followed by Coumadin. A short time into treatment I experienced serious chest pain and it felt like I passed a clot through my heart. I returned to ER and it was confirmed that the major veins of both legs had passed their clots. There was no change to the therapy (Coumadin at that point) and I continued to improve. I was tested and found negative for clotting factors. It is believed that the Yaz during surgery was the predisposing factor to my clotting event. I’m now 4years post DVT/PE event and have learned a lot that is important for clot survivors to know. 1) Having had a clot is the greatest predictor of having another clot even without clotting factors. 2) Having DVT/PE can cause damage to the valves in your veins affecting your circulation (this is why the compression stockings are so important to minimize this damage). 3)PE can leave scar tissue in the pulmonary arteries causing pulmonary hypertension–a very serious complication that can lead to right heart failure over time. If you experience lethergy and leg swelling and fainting or cyanosis, see a pulmonologist and /or cardiologist asap. 4) Your deep leg veins are supported by your muscles so activity assists with their blood return process. 5) If you are planning on being inactive for more than 8 hours (long flight or drive) use a Lovenox injection just to be safe. 6) Lose weight if you are over your ideal as extra weight adds a significant burden to your vascular work and its ability to function properly.
As for me, I am fortunate so far. I still have shortness of breath and I feel chest pain at times, but most of the time feel normal. The pain from the thrombophlebitis took about 2 years to go away in my arm and about only 6 months for my calf superficial clot. I sustained damaged to my valves so my leg veins are becoming more prominent. Elevating your legs above your heart daily really helps as does avoidance of sitting for prolonged periods of time. Exercise helps. I have no idea what the future holds but I will remain highly intune to my body as I know very well what an insult clots are to the entire circulatory system. As for the worry and depression some of you are experiencing, take heart. It is scary! It is an area that few general practitioners are well versed in and even fewer share information (probably in the hopes of not scaring anyone unnecessarily). I would strongly suggest you pursue any serious symptoms with a vascular surgeon or pulmonologist or cardiologist. Google specialists available to you and ask for a specific referral. Knowledge is power and try not to worry–worry never changed an outcome! Stay strong, be your own advocate, and be good to your health. I wish you all the very best.
I’m so thankful I found this site. I was diagnosed at the start of the month with PE & DVT. I’ve tried to go back to work but fell in a heap within a week. My doctors said that it would take at least 6 months to recover but have not explained what to expect in that time. Your posts have put my mind at ease a little as I’m still very short of breath, feel that extra weight on my chest & my legs are swollen. I’ve started to panic every time that I get a pain through my chest not sure if its something I should be worried about. I understand that it will take time to fully recover but it would be great to know what type of time frame I can expect to be ok to work. Thank you to everyone for your posts above, its made me feel much better about all aspects of what we are going through.
Thank you for the information and for the shared experiences. In August, I called an ambulance to my home as I felt I was having a heart attack, being excruciating pain in my left chest area (I’m 36). Got some great pain relief, was taken to hospital, chest x-ray was clear and was told I probably just pulled a muscle playing sport. Went to GP after that for stronger pain relief. Was given Endone. Did nothing. Pain was just as bad. Three weeks later, I started coughing up blood. I was convinced I had lung cancer and finally got my Dr to get me a CT scan.
Scan showed a blood clot in each lung. Admitted immediately to hospital and on blood thinners. I was told I’d be on blood thinners for 3-6 months and would be fine.
Had my 3 month check up 2 weeks ago. They said seeing as though I had no breathing issues and only minor pain, all seemed good, but asked me to do a Lung Ventilation test, just to be sure. Did that and went back to the specialist today. He said there was bad news. Clot in left lung is still there, but way smaller. Need to continue on blood thinners, but Dr wants a second opinion as he is 99% sure it’s a blood clot, but worse case scenario is it could be lung cancer. He then seemed surprised when I start crying. . . . .
so sorry about your continued lung issues. Some Doctors need to have yearly education in compassion!
Michelle, I realize this was over a year ago when this happened to you (I’m new here, so is my PE). My heart just broke for you. What is wrong with these damn doctors! My doctor (Cardiologist) is the same, matter of fact, no mincing words, no bedside manner. When I found out about my PE, I was shocked, terrified and upset, she told me how lucky I was and this is my like now, like it or not. What?!! I was trembling and gasping for air. She calmly wrote me prescription for Ativan (thank god!). I know it could be worse but it’s a terrible thing… life changing. I hope you are well and it wasn’t lung cancer. I thought for sure I had lung cancer while I was getting my CT and the tech. said I had to talk to my doc. ASAP. I was a smoker for 20 years. Of course that’s what I thought, it wasn’t thankfully! I had a small PE and I still don’t know why yet, (waiting for tests). I hope you are ok.
I have the Same general situation as many others here. I had a persistent cough for a month, was diagnosed with reflux issues and put me on Ranitidine. When that didn’t resolve the cough and it actually worsened, I developed a ‘community acquired’ pneumonia and started coughing bloody sputum. An on duty Nurse Practitioner at my primary care provider’s site put me on Prednisone to get some oxygen to the lower right lung . Two days later on Prednisone, I developed a hot,red,swelling just above my left knee ; I was told to go to the ER with this. When I went to the ER, they found a DVT in the leg and a moderate sized PE in the left lower lobe and admitted me for a 2 day series of Lovenox, continued the antibiotics and periodic albuterol for the cough. Now I’m on Xarelto and over the pneumonia but I still have no idea when or if I’ll be able to stop coughing. Right after discharge from the hospital, I went to the ER with worsened coughing. Someone dropped the ball somewhere and may have even done some harm: I went so far as to talk to a malpractice lawyer and he suggested I see a Hematologist and a Pulmonologist. So I finally will get to see a Medical Doctor following discharge from the hospital 6 weeks ago.
This is a valuable site. I’m impressed by how common our experiences are.
Thanks for doing this.
Hi everyone. I am 3 weeks out from shoulder surgery my 4th and never any problem with the 1st 3. I woke up from the fourth surgery knowing something was not right. Went home and just was not getting better my rt side hurt from the bottom rib to under my arm pit for. I waited a week before looking for answers. I thought it was muscle pain from the surgery but when I saw my o2 was vacillating between 95 and 98 I new I was in trouble. I went to the er had a CT with contrast and was diagnosed with a small PE. I have been put on blood thinners for 3 months. This scares the heck out of me. I work as a Tech/CNA in a hospital. My doctors did not inform me about length of time to heal they just said warfin for 3 months and there you go, yours was small no big deal!. I am so glad I found this sight. I am a very active 59 year old. 12 hours work shifts, gardening 1.5 hours treadmill every day. Now however walking more then 20 minutes at a slow pace for me is about all I can do. I use to sleep 6 hrs at most, now 8 to10. Thank you all for sharing I thought my anxiety my exhaustion was me being a baby.
Hello everyone 🙂
I was diagnosed with multiple PE in my lungs around a month ago now. The doctor showed me the results of my dye and gas tests and I was shocked to see that about a quater if not more of each lung had been starved of oxygen. The doctor said that I may be able to recover entirely but that I may be left with some scarring but that was about it. Nothing about coughing up bits of dead lung or the extreme fatigue and hopelessness I feel every day. I have three children, animals and a house to care for, plus I am/ was in the second year of my teaching degree. I say was because I have been devoting what energy I have to my family. I feel so grateful to still be here with them , especially as PE took my mother from me at the young age of 56, but I feel so bad and guilty that I’m so exhausted all the time. I’m just not me anymore. I don’t think I can face going back to uni anytime soon, which also makes me really sad. I’m sorry for being so miserable guys. I can’t talk to my family after what happened to my mother.
Love and speedy recovery to you all xxc
Hi Lucy4781
I hope you seek help with a counselor. I am so sorry you can’t speak to your family but please try. I am a strong take care of everyone person and this PE that I got after surgery has stripped me of my stamina and left me scared and fretting at every pain. I was not telling anyone how I felt. doctors never told me about anything other then “take warfarin you’ll be fine it was a small one”. I finally opened up to family and my co-ag nurse and she was able to help a lot by educating me to the facts. I have gone form heavy 12 hour work shift and 1.5 hour work outs to 20 min walking. With talking with family and the nurse it helps when I am stressing which helps with the healing good luck and hope you feel better with each day.
Hi there
I have just been told I have a blood clot on my lungs..no idea how it got there..it’s just come out of the blue..it’s was suffering from shortness of breath and chest pains so I went to my doctors who sent me straight to A and E..I was admitted to hospital for a few days and came out yesterday..I am on warfarin and have to inject myself with clexane..and tomorrow have to go back to hospital to get my bloods checked..I am 41 and a mother of 4 children..there’s no history of clots so no idea how this happened.i am really concerned as to how this will affect my everyday life..any advice would be great
Thank u Sherry x
Hi Sherry, I’m sorry to hear you gave had this bleed resulting in clots on your lungs. I suffered the same in July this year….I thought I had a chest infection…. No cause found for me. I’m 69, and for about 6 weeks I felt dreadful, back in bed for a sleep at lunchtime. I’m fine now, your body will cope with your embolism, and warfarin will help prevent any future happenings. I’m so well, I’m flying to NZ in Wednesday. Have a lovely Christmas. Iris
I gave birth to my eighth baby in the beginning of May. She was taken early by c-section due to complications with the pregnancy. A week and a half later, she was in NICU with meningitis. She survived and is doing well, but she requires daily care to keep her healthy as we await possible surgery for her when she turns a year old. I was stuck on bed rest when she was admitted, trying to recover so I could be with her in the hospital. I kept having pain in my outer groin/low abdomen area. I didn’t think anything of it because I just had a c-section. A blood clot ran through my mind, but the leg looked normal and wasn’t swollen or warm, so I dropped the thought. I had no history of clots and I wasn’t on any hormonal drugs. I started getting low grade fevers and the pain increased so that I couldn’t walk. My OB sent me to ER where they found a DVT that ran from mid calf all the way into my lower abdomen. I was hospitalized for a week and sent home on lovanox. A week later, I started have a panic attack and felt like I couldn’t breathe. I was sent to ER again where they found the embolism in my lower left lung. On top of that, the clot in my leg grew and now ran from the ankle all the way up to mid abdomen. I was placed in Critical Care for another week and then moved to another floor when I stabilized until the warfarin could build up enough before going home. I never had extreme pain from the PE. My leg has caused more pain than the PE. I’ve been on 12mg warfarin since June now, and I’m still having trouble staying in therapeutic range. I’ve had good days and bad days. I was in a wheelchair for about a month because the shortest walk would send my heart racing above 130bpm. I’m walking on my own again (although, I still don’t walk very far without resting and I have a significant limp). The clot in my lung resolved after about 4 months. There was a noticeable difference in my ability to take a deep breathe. The clot in my leg resolved very slightly between June and October. The pain in my leg returned with a vengeance in early December and they just found that the clot has not changed at all since my last scan in October. It still runs the full length of my leg into mid abdomen. I often get sharp pain and tingling in my toes. The pain in my thigh and knee keeps me from walking too much. I’m so tired ALL THE TIME (and I can’t even blame it on having a baby). I still have days where I feel like the panic and anxiety are just so overwhelming. Other days, I feel normal and think that it’s finally behind me. My poor husband has had a really hard time feeling helpless and abandoned. He’s had to take over the house, the kids, and caring for my mother who had a mild stroke a few years ago. My oldest children have done a great job steeping up and taking my place since my husband went back to work. They’ve done a fantastic job caring for their baby sister. She had a couple more admissions to the hospital as well since her release from NICU. I have a pulse/ox monitor to help calm my nerves and tell me whether to head to ER or stay home. It can even work on my toes where I’ve seen my saturation go as low as 85. I hate going to ER because it always feels like a waste of everyone’s time. The mental part of this whole thing has been by far the worst. Not being able to drive, not being able to cook/clean/shop, not being able to carry and walk with my baby, watching my other seven children worry about me, it’s all so crushing to my spirit 🙁 Reading some of the many responses here has made me feel so much better! I’ve felt so alone and scared and crazy for so long. I still have a long road ahead of me. I had to wean my baby over Christmas week in anticipation of moving to a new drug once again. Through all the physical and mental pain, I try to remember to be thankful that I’m still here with my husband and children. My low point was when he brought them to visit me in the hospital just in case I didn’t make it home.
dear is there any medical assistence fr PE my youngr brother is in PE due to a road accident he is on oxigen n ICU plz advice if there is any doctor how we take the measurs my cell +923002045110
Hi everyone! 26 year old male here. I had a large saddle PE that stretched across both lungs. I have been active my whole young life. I am a collegiate lacrosse coach and still (well, used to before the PE) play on multiple teams throughout the year. My PE seemingly was caused by a muscle tear, that caused DVT in my left leg. Right before the tear, I was able to go on 4 mile runs multiple times a week. Apparently my PE had been developing for weeks before I reluctantly succumbed to urgent care and hospital assistance. My girlfriend, a nurse, thought my being out of shape was due to anemia and not exercising due to the muscle tear. It explained all my symptoms. Unfortunately, my diagnosis couldn’t have been much worse. Hospital for 6 days. Coumadin for 6-9 months. I was diagnosed in early September. It has now been close to 4 months, and I still have trouble jogging a mile. My chest feels like it’s burning, and I feel anxious 24/7. I was also diagnosed with pulmonary infarction of my lower left lung, which they said would be painful as my body tried to “deal with it” in time. I miss being active, and I miss playing lacrosse. Most of all, I miss feeling healthy. I always feel like I should be going to urgent care, even though my INR is constantly therapeutic, my daily avg heart rate is 68 bpm, EKG is perfect, my chest X-rays were fine, lung function test was above average (even for a healthy 26 yr old), and my most recent CAT scan showed that the PE has shown some signs of dissolving. My primary Doctor said that I would experience chest pain somewhat regularly…but it never feels normal. It comes on completely at random and lasts anywhere from a few seconds to a few hours of dull squeezing. The anxiety is the thing that gets me the worst…having been a very stress free person before the PE, I now feel anxious about the most stupid of things, most regularly being driving on major highways. I don’t know if the new pains are normal or not, they have come on pretty consistently the past few days. Might be time for my first 2016 doctors appointment (of which I’m sure they will send me to urgent care and get me a CAT scan for complaining about chest pain). All in all. I’m happy I’m currently alive. I can deal with the Coumadin clinics, and even the random doctors appointments and hospital visits…I’m just not sure how I will cope with the anxiety and stress after I get taken off the warfarin in a few months (no timetable for this btw, they said 6-9 months, but none of my doctors seem to know for sure). Best of luck to everyone. Keep smiling, if you are reading this, we are both still alive and kicking 😉
I just picked up on your anxiety about driving on major highways. I had a couple of non serious motorbike spills whilst a teenager46years ago and have always been a slightly nervous car passenger since. However following both my PE s I m just a nightmare in the car if I m being driven(I m alright if I m driving – but not strong enough yet for long journeys) I ve tried everything from tapping my face and chanting I m not a bad person just because I feel nervous in the car to knitting or reading the paper but nothing seems to work – I ve just come across a You Tube(spelling?) by Louise Hay about facing you fears I m going to give that a try. Not sure this time it s because I know a crash would be very serious for me on Rivaoxoban -It s just like I have flash backs & just feel we re going to crash all the time. Don t know if you re still on this site as your P E was a while ago and whether your fears have lessened over time?
I just wanted to follow up on my healing. My blood clot (PE) as mentioned before was in early December of last year. I live in San Diego and have since flown on a plane to San Francisco, Seattle, New York, Bogota, and am currently in Bucaramanga Colombia. I walk every day for 90 plus minutes and feel fine. I have been giving myself the lovenox injections for about 6 weeks now. I feel fine and my only issue is with the bruising from the injection site in my abdomen. I’m thinking i only need to do this for 2 more weeks and am very happy with my progress. I’m 50 years old, don’t smoke, do any recreational drugs, and drink very rarely. I believe this has had a lot to do with my healing process along with the power of positive thoughts. I never feel tired as a matter of fact more like an insomniac. Just wanted to skate that it is not all gloom, gloom, and doom with everyone. Think positive healing thoughts and I believe it will help you.
I’m really pleased that you are able to get back to your normal life so soon. Yes a positive attitude does work wonders, though many of us have had PEs and not recovered so quickly, even with a positive attitude. It might depend on the size and severity of the PEs I fear.
My daughter had bilateral PE. First doctor misdiagnosed-twice! Long story short put on Xarelto for 9 months, then specialist said studies show taking for 3 months is the same as 6 or 9 months. Any thoughts, we really don’t know what to think.
I was diagnosed with small PE in lung one month ago, I’ve been on Xeralto 15mgs.x2 daily for 3 weeks. Then cut down to 20mgs.x1 daily. I don’t know if it’s the PE or the Xeralto but I feel so fatigued, tired, can’t keep a straight thought, constant headaches, anxiety attacks (thank you Ativan!). Whew! Doc. Says the only way to tell if it’s the meds. I have to stop but I can’t or I’ll prob. get another clot ?? Who really knows. I have not heard about Xeralto working that aggressively. I’m calling the company tomorrow, I need to know as well. I hate this drug! But the alternatives don’t look so good either.
Hi I am looking for some advise as I don’t really know much November 18th I was 33 weeks pregnant my placenta erupted my baby died in lost 7 pints of blood almost died had to have blood transfusions was sent home after 5 days of intensive care then 21st of December I was rushed to hospital with severe chest and back pain diagnosed with several PE on my lungs and left lung collapsed was taken to intensive care next 24 hours where crucial was sent home after ten days with 120 mg enoxaparin injection but I’m suffering really bad I sit up I don’t feel well can’t walk because I am so weak my boyfriend has to help me in Bath and to the toilet I Carnt even manage a simple things like making a cup of tea I Carnt stand up for longer than a minute I constantly feel unwell out of breath just walking to toilet and back and so unsteady on my feet I have real bad anxiety and panic attacks I just want my life back in don’t know what to do anymore
Is it normal to feel so unwell after 6 7 weeks of being diagnosed with the severel clots in my lungs I’m In bed constantly because of how unwell I feel I go so lightheaded like I’m going to pass out I worry for my life constantly I feel like I’m never going to get better
Hey 🙂 I have loved reading through many of the stories shared. It has been relieving in a way to know so many others have basically experienced the same thing that I have.
Last year at the age of 28 I went from being one of top natural fitness models in the world and running the largest comp prep business in Australia to bed ridden in hospital for 22days.
Over a period of 2 months I noticed my left arm was pumping up slightly better than my right when training but thought nothing of it as my other arm has slight nerve damage from when I broke my neck 8 years prior playing rugby union. Finally one day when training my left arm swelled up instantly and was 22cm larger than my right. I went to the hospital and because all my obs were perfect they sent me home with “tendinitis” being the diagnosis.
I had ultrasounds done after then visiting my GP and they couldn’t find anything wrong.
2 weeks later I woke up and my arm was even bigger and extremely red (my son told me I looked like hell boy haha) so I went back in to the hospital. They tried to turn me away again because at this stage I still wasn’t having any issues breathing or pain what so ever. My heart rate and blood pressure was also perfect.
After doing my own research I got rather angry and asked for another ultrasound and an angiogram. When they realised I wasn’t leaving they finally did the above.
It turned out after all the scans I had the largest DVT in the chest they had ever seen (18cm long) and had in their words over a dozen PEs through both sides of my lungs). I was like this new attraction in the hospital, Drs and surgeons flew in from other states to observe the young bodybuilder whom had a rare form of thoracic outlet syndrome.
I spent 48hours with some ultrasound machine and other cables inserted into my left bicep and that main artery to breakdown the clot. It was the worst pain of my life! It felt like I was being stabbed constantly the entire time. Then a week later they removed my first left rib and clavicle rib as they believe the cause was thoracic outlet syndrome.
I was on blood thinners (rivoroxaban) for 6 months and wasn’t even allowed to lift a single DB. After my surgery my lungs were never the same and I still struggle today here and there. Especially when I try to train.
I have been off blood thinners now for 3 months and my whole way of life has been majorly effected. I lost 64% of my muscle mass and can barely run around with my kids.
I have been back into hospital twice over the last 8months on occasions where I have found myself struggling to breath to the point where I have almost collapsed. I recently had a D-dime blood test done and this came back saying there was no traces of active blood clots what so ever. Not sure how accurate that is considering when I had blood tests done prior to being diagnosed they also didn’t show anything.
I am my own worst enemy though as I probably did try and train again way too fast.
I think I have finally come to the realisation that I won’t ever be back to normal and I may never recover enough to look like I once did……not that I won’t try
My main concern now though is wether they are thorough enough when I do go in. I have my 4th kid on the way and I would very much like to be around to watch her grow up. I still get pain in my ribs and chest sometimes. I get short of breath for no reason every few days if not more often and my heart rate on the rare Occassion will elevate while being in a rested state.
I guess like a lot of you. Unfortunately it seems like it’s a waiting game. What a shit feeling it is to know you have a high chance for this to all happen again.
2008 i had out of nowhere a dvt above knee. Was on warfarin for 6 months. That was that.
2014 the same leg pain came back on right leg. doctor sent me home with Antibiotics for muscle infection. 3 months later same this time on left leg. This doctor (different doc) sent me straight to hospital. Blood test was negative, no clots found on my legs.
Just before they discharged me. I begged them to scan my chest.
Not for clots but as a peace of mind to erase my worry of cancer. Both my parents died of cancer 7 days of each other. And since I’ve had irrational fear of cancer.
At first they refused, but eventually agreed.
I hung around for couple hrs and was called back for my results.
Their faces were of shock. The scan showed 2 Massive Pulmonary Embolism’s one in each lung, saddled on my main artery.
My INR never settled on Warfarin, and am now on Riveroboxan for the rest of my life.
I was not told recovery time. But I’m constantly breathless.
The only symptom I had was constantly falling asleep. No chest pain nothing. I was a walking time bomb and didn’t know it. Had I not insisted on that ‘peace of mind ‘ scan, God knows what would of happen.
always go with the gut feelings most people KNOW when something is not right in their body’s I got a PE from surgery. I woke up knowing something was not right. I was sent home from shoulder surgery same day just like the last three but I did not start feeling better in fact started getting worse. I could not put a finger on it I just knew all the other surgery’s I was up within two days myself again. After a week of feeling like crud I went to the walk in clinic they did chest xray nothing. They wanted to send me home without anymore test. I put my foot down and said to run every blood test they could think of full panel liver, heart kidney cbc and a D- dimer. They sent me home and by the time I got home they called and said to head to the ER I had a blood clot. So if ya think something is wrong no not wait get it checked and stay firm
Wow sounds strangely like me healthy 30 year old male. Woke up with what felt lime a “charlie horse” that wouldn’t let go, then after an ultra sound and a ct with contrast I find out I have 2 DVT’s and multiple PE’s. I spent a week in Progressive Care and a few more days in Observation. Now the hunt for the answers begin. Namely WHY and HOW. Right now after 38 vials of blood being drawn I’m waiting the 6 wks until the results o the battery of test are in! Extremely Scary I have a wife an a 1 1/2 year old boy! Been seriously considering life insurance what if I don’t … Well yeah I don’t want to say it but it scares me!
I am glad I found this forum. Just was diagnosed with DVT/PE on March 2 after my PCP had me rushed to the ER. I was experiencing shortness of breath mostly while exercising. They found clots in both lungs and behind each knee. I know I had some trauma to my legs from martial arts and remember pulling calf muscles during this exercise. I had pain in my calves at various times before the breathing was affected. The doctors at the hospital and my primary dismiss this as being related and tell me it is most likely genetic and I will be on blood thinners for life. This is so devastating to me as I’m 53 and up until this happened, did everything I could to stay healthy. I don’t know if I will ever be the same again, I’m grateful to be alive no doubt. I’m seeing a hematologist this week and hope she has a more open minded attitude about what may have provoked this. If it still amounts to the risk of a returning PE and/or death, then I’ll gladly take my Coumadin for life and be thankful. Just wanted to share this as I never saw this coming either and it is good to hear others’ stories at times.
Hi I’ve come across this site and it’s been a bit of an eye opener.. I am 28 years old, fit, healthy and normal bmi.. I’m currently 29 weeks pregnant and 2 weeks ago after 13 weeks of calling my maternity assessment unit with complaints of breathlessness and dizzy spells and being palmed off without even being checked, I was diagnosed as having a blood clot in each lung.. All my usual tests ie blood, oxygen and chest X-ray came back clear, it was a VQ (I think that’s what it was called), scan that showed what the problem was.. I now have been diagnosed today with a bad chest infection on top of already struggling to breathe.. Can anyone tell me if chest infections are normal after PE? Also how do you cope with the fear and absolute comfusion about your diagnosis? I was told that if I hadn’t demanded to be checked over that day me and my baby would have probably died before making it to the end of the pregnancy, and this is leaving me angry, upset and also terrified that it could still happen.. I was sent home from hospital with clexane injections and told pretty much that they would dissolve the clots.. After an appointment with my consultants on Monday I’ve been told this isn’t the case at all.. I’m very confused, tired, hormonal and just fed up with not really understanding what is going on inside my body!
All help would be appreciated!
Thanks
Stacey
Hello, I had bilateral pulmonary embolism’s in June of 2015 2 weeks before I went to the icu I went to er with swelling in both legs they did a ultrasound on both legs and said they found nothing hers a pain pill have a nice day. About a week and a half later I had pain in my shoulder blade and just figured I pulled something since my job is physical. It just got worse where 4 days later I couldn’t lay down it was to hard to breathe so around 3 am when my wife woke up to get ready for bed she saw me sitting up with my hoodie on trying to sleep I told her what was going on she said your going to the ER I argued with her about it said I would be ok until she got of work at noon and we would go then and I would get of work early. She called in sick and I reluctantly went in. In the ER they kept thinking I had knemonia and kept giving me breathing treatments telling me to breathe deep I kept telling the F I can’t breathe in that’s the problem and the pain was intense and then they gave me pain killer’s alot but only helped a little. Also the said the CT machine just broke down but my regular x-ray look good 4 hours later I got the scan and rushed me to ICU where I stayed for 5 days then went home and rested gave myself shots to the stomach and more and more pills. My wife saved my life that day if I stayed home I wouldn’t be here . 10 months have gone by and I still feel the pain sometimes legs swell a ltl but nothing serious and just recently went off thinners it’s been a scary time for me and my baby but I try not to worry her with it but I absolutely increased my life insurance for her. I’ve always been pretty healthy I’m 52 and this came out of no where and still scares the s@$% out of me
I had two PE’s last year, January 8, 2015. I had pain from my neck to me hip for two days. Then the worst pain I’ve ever felt came over the right side of my body from my head down to my toes. I passed out and hit my head on the bathroom door. Mind you, I live alone. I was 29 when this happened.
When I came to, I called my brother, father and then an ambulance.
4 hours in the ER, 4 tests and they told me I had two blood clots in my lungs and that I’m extremely lucky to be alive.
They kept me in the hospital for 5 days. They ran test after test after test and now 15 months later, they still can’t figure out how this happened. I think that’s the worst part, not knowing why this happened. And because of that reason I will have to be on blood thinners for the rest of my life.
I also suffer from the anxiety and worry about this happening again. I still get pain on my right side which causes me to think I’m having another clot. My doctors have all reassured me that it is nearly impossible to have another clot while taking the thinners.
But this has definitely changed my life and it has consumed me. After the year mark, I did notice I wasn’t thinking about it as much but every time I feel a little ache I start to panic.
I’m hoping this won’t last forever and I’m happy I came across this post knowing I’m not the only one who feels this way.
Hi, I have just recovered my second bout with blood clots in both lungs and almost died. After first time and being on xarelto for 6 months I wanted off medicine and Doctor agree cause I was feeling so good and we had no idea how I got clots in first place. After eight days I was not feelin right and I was on a Cruise. Luckily I had meds. And went back on them. When I came home Doctor said all vitals were good and was anxiety I was feeling. So we went back off Meds. After five days I could not breath and I was in heart failure and clots came back in lungs and I almost died. I have had 22 surgeries and take Lexapro for anxiety and really help. A lot of what u feel after cloths is anxiety. I believe in God and what he wishes will be done so why worry. When I got home from hospital the second time I ripped all papers up and said this is up to me to fight back again like I did all my life after surgies. Broken arm and leg and yes I can do treadmill and I do hair for a living and I am deal with plate and screws in arm. I went back to work eight days latter helping with my Hair business. So I got on treadmill after hospital and walked very slow for five minutes. Wow I was scared but did it. I slowly build myself up again. It’s been five weeks and I go to gymn and do a lot of exercise some times two hours that I am comfortable with. Now I feel I am back to who I was before. Do I get tight in chest. Yes. Does my breathing get little funny. Yes. But I ignore it all and truly believe it’s anxiety. If it’s Gods will to die then all my worring will get me nowhere. Hope by sharing I have helped at least one of you. I am 65 and enjoying Gods 2nd chance of life and it is a beautiful place.
Thanks for this blog, it is helping me put things in perspective. I have a family history of clots. I had a DVT 18 months ago and was on warfarin/coumadin for 6 months. About 1 1/2 months ago, I had the flu and after the symptoms subsided, I had issues breathing when working out, going up stairs. I was chalking it up to the after effects of the flu, but got worse. After two weeks, I went to the emergency room and was diagnosed with submassive PEs in both lungs and a recurrence of the DVT. The pulmonologist seems to think I will be back to normal after 2-3 months, but after one month, I get dizzy/out-of-breath doing simple yard work. I am hoping I fully recover, but reading your post and these comments, I have to hope this is not permanent. I have come to terms with being on anti-coagulants for the rest of my life, but I really want to get out an hike again.
Hi I’m in to my 4th month of recovery after having large blood clots in both lungs and several small ones but the truth is I still don’t feel well at all I don’t get our of bed much because I feel unwell I go dizzy really hot and go real funny sometimes it’s hard to explain how I’m feeling doctors think it’s in my head because I suffer anxiety I’m convinced this is not true I just want some sort of life back its not fair on my son I’m so scared just tried g to do a simple task like making a cup of tea takes it out of me and I have to return back to bed
I had two different times with blood clots in lung. This last time I almost died. I believe in God and very positive. I take lexapro for anxiety. I go to gymn alot and work out. It helped me very much. Just got to listen to ur body talk.
Jade, what medication/s are you on? What you are feeling is real, no matter what doctors say. This isn’t happening to them! Take one day at a time, find someone to talk to about your feelings. Because of the idiot ER doc. My husband thinks most of what I’m feeling is all in my head! Great! I’m going on an anti depressant ASAP and I take Ativan as needed. I take 20 Mgs. Xeralto per day and feel like I have a constant, blinding hangover. Fatigue and acute irritability, disengaged, exhausted. Is if the PE? The meds.? Both? I’m a hairdresser and I have to be “on”. I feel like disappearing. I only work s few days a week and struggle with that. I had a small PE lung, docs say I’m lucky…it could be a lot worse. I try to keep that going in my mind when I feel like giving up. I hope it gets better for you very soon.
I am so glad I stumbled upon this site as I was searching for answers to my questions and I am so glad to see that I am not alone in this. Blessings to you and all who have posted here. My PE happened 1 year and 6 days ago, which was 3 days after a surgery for a torn ACL in my knee. I had no idea that’s what it was when I went to the ER. I thought I was having a bad reaction to the pain med. I had become nauseous, dizzy, and short of breath for a day and the shortness of breath became increasingly worse over the course of that day. I’m not a ‘rush off to the ER’ kind of person, but something kept telling me that I needed to go. They seemed to know what was going on as soon as I got there. They wasted no time. After the tests, the dr. told me that I was pretty lucky, that if I had waited til morning I wouldn’t be there. That was the scariest thing I had ever heard and since that night, I have lived in fear that it will happen again, though I try not to let it consume me. Recovery time was never discussed, though in the beginning I was told I would probably be on the Warfarin for 3 mos. That 3 mos came and went and there hasn’t been discussion of coming off of it and now, I think I would be too scared to come off of it. As a result of being on the Warfarin, for the last 10 mos, I have had EXTREMELY heavy periods that last from two to 4 weeks at a time, it has been awful. As a result of the heavy periods(heavy isn’t even the right word for it…10 x’s worse than heavy) My iron, which has already always been on the low side dipped super low last summer and I ended up on IV Iron treatments for 6 mos. My gyn recommended a hysterectomy before Christmas, but I backed out of it, too scared to have another surgery. He has told me now that I really need to have an edometrial ablation to try to stop or slow down the periods and also a D n C procedure because the lining of my uterus is too thick. I reluctantly agreed and the surgery has been scheduled for May 3, and I do know that extra precautions will taken to try and prevent antoher PE (I will be off of the Warfarin for 5 days prior and on Lovenox injections for a total of 10 days), I also know that I am at higher risk for another PE after a surgery and unfortunately, there are no guarantees. I am to the point of backing out of this surgery too. I am scared beyond what anyone (anyone but those who have survived it, that is) can imagine. I don’t think my husband and family realizes how serious this is. The fear is real. Has anyone experienced these same issues and had to have the same procedure or had to have any kind of surgery after a PE? I know this sounds silly, but are there any support groups that anyone knows of for folks like us who have survived a PE and living with the fear of another one? There sure needs to be one.
Wow Good luck. I had to go off blood thinners before surgeries and was scared but put my life in the hands of God. It is what it is and sometimes we need the surgeries. I feel enough of meds. Is in your system and a couple days you are okay.
I was doing some research for my Mom on blood clots. We just found a large clot in her lung a week ago. They think it came from her leg that she recently had knee replacement surgery on last fall. She spent 5 days in ICU and is now going to assisted care for further rehab. She is very scared and worried. We almost lost her. Does anyone have any tips that I can use to help her through this?
I developed a PE in my left lung after I had surgery on my left leg because of a broken leg,the MD put me on Enoxaparin as well as Warfarinization, the internal medicine doctor said I would go back on 81mgs of aspirin once Warfarin treatment was finished,then I was transferred to a cottage hospital closer to my home,and under another general practioner. There is no known history of coronary artery disease, no history of seizure disorders or GI bleed, so the GP is telling me I will take the warfarin the rest of my life, but he doesn’t think its necessary for me to have a ultra sound because of the lifelong use of the warfarin, I feel that I as the patient should have this ultrasound just to see if the clot is still there, he disagrees. I also do not have any history of arrhythmias, all other doctors, Surgeon, internist, and MD who looked after me in the hospital said I would be on the Warfarin for only three months and then after the treatment was finished back on the 81mgs of aspirin. My doctor it seems uses scare tactics to keep you on these pills. Example: if you go off these pills you could have a heart attack or stroke which could prove fatal, so tell me anyone, I was doing okay until two days after my surgery, but I had to hop to get around I was unable to bear weight on my left foot, so the physio was getting me to hop everywhere. which I think starting me feeling dizzy. otherwise I was fine. Has anyone ever experienced a brick wall like this. Even before my sugery I was fine, I was walking outside for one of daily walks I fell in my driveway when I came back, slipped on ice, otherwise I was fine.
I was like so many of you, so relieved to find this page and all your stories, it’s helped reduce the overwhelming anxiety I was suffering from which was magnifying everything so much.
My story: female, 44, healthy non-smoker with a few extra kgs (but not obese) doing regular yoga for at least 4 hours weekly as main exercise.
My theory of how I got my PE is mostly likely a red-eye flight in which I was in the last row of the plane, couldn’t recline seat, stuck in window seat unable to move and more uncomfortable and immobile than usual for over 4 hours. Travel by air regularly for work but usually get up at least once every 2 hours. Then 1 week later decide to go jogging with partner (which I haven’t done for years). I think there must have been small clots in my legs which got shaken free by the jogging. 24 hours later I get a sudden specific shoulder pain which feels muscular and which I thought initially may have been from yoga which I did in the morning, but by evening the discomfort had spread and my right chest felt slightly tight, and changing pain radiating around my right torso and into the upper right arm, coming and going. Consult Dr Google worried about a heart attack (thanks to one of those email forwards warning you that women have different and more subtle symptoms than men) but then find info about PE, and it seems really similar to what I’m experiencing. Next morning symptoms still there so go to my GP asking for D-dimer. GP flat out doesn’t believe me, says I look fine, until I mention that on the way there I felt unusually out of breath. Do the blood test, and get a call a few hours later telling me to go to emergency right away. They take bloods and do scans and find subsegmental PE in right lung. Never had any pain in legs so they didn’t check them, but they said 90 percent chance the clots originated in my legs. My vitals were all great, but I was kept in for 24 hours. Catching it so early I imagine has made a massive difference to the relatively mild symptoms. Hurrah for yoga, self-awareness and Dr Google!
2 weeks after discharge I was expecting to start to feel better – I was told at the hospital that I could expect symptoms to be lifting at around 2-3 weeks. But my symptoms have not really changed in intensity and is now 2.5 weeks. I’ve had subtle changes in symptoms the whole time – I have random little twinges all over, always in different places, but always quite mild, in hands, feet, shoulders, arms, legs, even scalp. I get a bit spacey and slightly dizzy fairly regularly, and I’ve had some symptoms which could possibly be mild GERD. I’ve ended up going back to ED twice very anxious about the changing symptoms, but each time my vitals have been fine. Have invested in an oximeter so I can feel even more confident that I’m ok at home, now that I’ve found this page and have a better understanding that my symptoms may be around for quite a bit longer.
Honestly it has made SUCH a massive difference to my level of anxiety knowing that this is normal, which the docs at the hospital didn’t really emphasise (well one ED doctor did a little but it’s all so confusing being sick like this for pretty much the first time in my life). I still don’t have results about whether or not this might have a genetic cause, and I won’t have all the rest done until after I’m off medication. I realise that I’m much luckier than so many people here, I’ve basically got straight back to work the day after my discharge, and for that I’m so grateful, but more than anything I’m grateful to be able to share my story too so others can also feel less alone and fearful. I’ve always been very healthy and something like this that comes and goes is really terrifying and the anxiety had been crippling, but today since reading this page I have felt so much better. I know it’s unlikely to go away completely but it’s so much better than it was, so thank you all so much for taking the time to share.
I thought I was alone in this struggle. I was diagnosed on February 3rd. 2016 a day I will never forget because it changed my life. I was having pain in my side right under my breast which radiated to my back for about a week. I decided to go to the doctor where they did an X Ray and called the radiologist in th office to review the film. After he reviewed it he said I called 911 because I see something in your lungs that resembles a PE I went to the hospital was directly admitted, a CT scan confirmed what the radiologist thought blood cots in my left lung. I stated in the hospital for 9 days getting lovenox shots and taking warfarin until I was within therapeutic range 2.0-3.0. I went home on 4 mil and I have my INR checked weekly or whenever I feel the need. I was recently hospitalized on 4/28 due to that familiar pain again and another CT scan confirmed the clots are all gone. I have to stay on my warfarin for one year but, im always nervous when I feel a pain, im constantly thinking about what could have happened and how blessed I am. I see my hemotologist monthly because that’s what I require. If your doctor doesn’t give you the answers you want and need then switch its your health and you are in control. Having had a PE I understand how scary it is because I’m still in that boat even after I was told its gone but, I didn’t want this to control my life. You survived for a reason, you have a purpose that you haven’t fulfilled as yet. You are blessed beyond belief.
What a story Kudra! Bless you. Don’t push yourself to hard and take care.
They haven’t found out where my clots came from legs,abdomen and arms were all clear. I’m awaiting my results from the second 1/2 of my lupus anticoagulant test. All of my genetic testing a came back negative I even had a bone marrow biopsy to rule out cancer.
Hey fellow travelers, I’m in the same boat as most of you having had one PE and two DVT’s (one in each leg). Experienced the ying/yang of doctors from Dr. Weed to Dr. Smart (actual names, but seriously more like Dr. NotSoSmart). My perception of it all (having clocked in 41 years so far) is that I have already lived a well traveled life, so it is only bonus points from here. Make the rest worth your while because it’s obvious that it can happen to anyone, from the best athletes to the best coach potatoes. Just as a reference, I have went from extreme skateboarding, snowboarding and hiking to mellow activities like disc golf, while limiting TV and computer time. After all this I’m now content with the situation because I no longer have the desire to prove anything to others or garner any sympathy. Life has been much smoother by disregarding all the bullsheeet that used to consume my time. Just as a pro tip, I spend my energy on other satisfying things than trying to convince others (that have not experienced a similar condition) of the ups and downs, cause you just have to walk it to truly understand, in my opinion. Let it ride and the worries just melt away but of course I’ll run to the ER if it gets past my breaking point. I’ve already done all the tests I care to take and poked all I’m willing to allow, so now I’m going to let nature balance it out due to the fact that drugs do not get rid of clots anyway, only my body can due that job. I say this in consideration of also making healthier choices as well, in regards to diet and activities. It has been working for me. Go find your new center of balance and let your last breathe be with joy.
Joel, does this mean that you are deciding to discontinue blood thinners? What were you/are taking? I’m having a very hard time with either the P.E.? Or the Xeralto? I feel terrible 90% of the time. I was very recently diagnosed with Factor V Leiden Mutation. I had (diagnosed) P.E. April 7. So I guess if hasn’t been that long ago, although it seems like I’ve been feeling terrible for a longer period of time.
You are in early healing process but I would find the drugs to be the culprit being that you didn’t feel terrible til on X. It just feels weird doesn’t it? For some reason I got over my PE symptoms really quick. Dr wanted me on coumadin but I refused, with no recurring issues until years later getting dvt and since I was over 40 I considered taking coumadin and I still got another dvt in the other leg within a year. Stuck me on lovenox for 4 months and after 2 injections daily I decided that I’m done with meds cause if it is hereditary then I’m screwed anyway since my dad has been taking xarelto for years and generally feels like crap all the time. X is the easiest option, if you can afford it, but coumadin has been around much longer, so if you can stomach the risks of taking new drugs then stay the course until you feel the time is right to reassess. I would consider going on coumadin until the clot has had time to dissolve to the best of your bodies ability, which is why Dr’s usually say 6 months of use but past that it has a highly debatable value. My experience was that coumadin gave me no ill effects but with lovenox I never felt right. For me it comes down to quality of life, there is no magic pill and taking the meds constantly reminded me of being ‘sick’ and really bummed me out. The best I’ve done for myself is to stay active cause I consider the second dvt I had was from moping around and simmering in sorrow, only getting out of bed when absolutely necessary. It may feel like every twitch your body makes now is impending doom, I’ve had a few ‘Redd Fox moments’ but regardless of what a Dr says, only your body is doing the healing not drugs.
Thanks for responding Joel. Turns out doc has decided to take me off X and on Lovenox for a while, a) because she wants to see if I feel an better L than on X. b) I need a surgical procedure done and need drug with shorter half life blah blah…how did Lovenix make you feel? Weight gain? Injections? super!! I will definitely drag my ass out of bed/couch and become more active. I too have been wallowing in my post PE depression. I too have had a few “Red Fox” moments. I laughed out loud when I read that you used that reference… I do/have as well. There are many days when I just can’t do even half the stuff I used to do. Work is very challenging as I am a hairdresser, so I have to be “on” 100%. Standing all day is impossible do I’ve reduced my clients to half. My kids are now teenagers so they are more independent any way. I miss my friends, they don’t really call anymore, prob. because I can’t drink anymore, that’s depressing too. I used to love having a few glasses of wine while a cooked dinner etc. margaritas with friends at our favorite Mexican restaurant. It all sucks so much that I can’t stand it. The worst part is that people are so unsympathetic, it’s like they are thinking “what’s the big deal, blood clot in lung, it’s over, you survived, you should feel great now”! I don’t ever feel great anymore. Hopefully getting off $X will make a difference…and on to Lovenox injections…
Yep, friends indeed. I don’t miss the booze but I have one when I really have the urge and found it best to ease off instead of full stop. Verify with doc that there is a reversal drug for L. There is one for warfarin/coumadin. Surgery increases risk of internal bleeding. Consider the old you gone and find a new balance to living. A great book to help rewire your brain called freedom from the known was a good guide for me. Opening any chapter that speaks to your concerns will get straight to the matter with no need to read it beginning to end.
I will talk to Hemo. about going on Coumadin instead of Loveox. Thanks for the suggestions, I will pick up the book, my brain needs some rewiring indeed, I feel like I’ve had a Lobotomy. The old me IS gone, I need to come to terms with that. It’s very hard for me to consider self improvement, when I really just want to just disappear. I’ll give that book a shot, chin up, trudge on…..thank you Joel.
Hi first thanks for your interesting blog ,
secondly , i would like to know if there is a risk after the first week after release from hospital (after being diagnosed as PE and treated , knowing it is second time and having IVC filter which attribute to clot formation) but first week after release from hospital is there life endanger risks/ what are the probabilities of this to happen ?Thank you Sara
Hey. I have a filter also. It’s been there over a year with no complications. Let’s just hope we don’t have the ones that I keep seeing the lawyer ads about it breaking.
Hi, I was just diagnosed with PE a few weeks ago after telling my doctor that I couldn’t breath right and my legs feeling numb plus my head feeling as if it was out in left field. He sent me directly to ER, and they ran every test they could and found the colt on my left lung. Spent 4 days in the hospital taking Heparin by IV and then put on Pradaxa 150mg twice daily. Now they are saying that I will probably be on this medication for about 4 months; but I was wondering does anyone know haw long it may take to get your head to feeling right again? I still a little light headed and bouncy.
Hi. It’s been almost a year since my bilateral PE ‘ S June 9th to be exact I’m still healing and not my self yet I went back to work 2 weeks after icu stay. I didn’t really have a choice in that with my employer breathing down my neck they even called me in the icu about money grrrrr. But it will be different for every one in healing sometimes I have really good days but those are far and In between just try and relax and stay positive I know it’s hard every little pain I think it’s happening again. Good luck to you. Mike…
I had my PE on April 7 or at least was diagnosed then. I have a feeling it happened a few days before. They put me directly on Xeralto. I don’t know if it’s side effects from drug? or PE ravaging through my body? A bit of both? I’ve been off of X for two days now preparing for a biopsy. I have good days and very bad days, feeling fatigued, dizzy, mindless, not myself at all. What are side effects from Pradaxa? It takes a long time to feel like your old self, I’m told. I’m also told that the old you is gone. Just when I feel better for a few days, I start feeling weak and weird again, like it’s happening all over again. I recently found out that I tested positive for Factor V Leiden Mutation, so now at age 48 I’m considered a clotter. I’ve dodged a million bullets in my life. Years of smoking whilst taking oral birth control, two normal pregnancies and c-sections, a badly sprained foot which laid me up for weeks, many long and cramped flights….many bullets. Suddenly outta nowhere I had a clot that turned my life upside down. Do the best you can everyday and some days that won’t be much and it’s ok.
Hello Everyone!
After reading some of your stories, I am glad to know I’m not alone.
Oh! the story I can tell you that got me here! Lets just say in short of it all, I was on a girls weekend when I was going through this and my girlfriends were tired of me bitching that I felt like I was 90 years old and I couldn’t catch my breath so they told me to suck it up and drink through it! Well I did, and finding out later from the ER doctors my girlfriends pretty much saved my life by having me drink because alcohol is a blood thinner. Doctors are amazed that I survived as I had a DVT that caused two large bilateral PE. My left lung is damaged from that embolism which my Pulmonary doctor said it probably wont completely heal but I should be alright since I’m not a smoker! Whaaaat?!
I am now just 3 months into this and after loads of test and genetic blood testing they are happy to blame it on the Birth control pill.
I too have not been given a honest answer to any of this. I don’t know how long I will be taking xeralto (blood thinners) The only thing I was told is we will be redoing all the test (CT w/contrast, ultra sound on leg and heart and blood work) In July.
Thats all I know, and truly I have been so numb I don’t even know how to absorb I should have died! I don’t even know if my family understands.
I am so thankful I found this blog. Thank you Sara!
How are you tolerating Xeralto? How do you feel physically and mentally? Are you getting the support you need from your family? Are they treating you like you should be fine already? My husband thinks all my weird feelings are self perpetuated. Nice
I had weird feels on the warfin ice in my veins feelings of doom depressed tired the feeling of being unwell all the time and so on I stopped the warfin after 6 weeks and in 4 days ALL of those side effects went away the doctor says no such side effects……yeah right all in my head I was lucky to have a small PE caused by a surgery I had a ct with contrast to make sure it had resolved it had thank God I do not ever want to take any blood thinner ever again!
Good Morning
I hate xeralto! You can’t get me off it fast enough! I know my Pulmonary Doctor just tells me what I want to hear and said I should be off xeralto by my 6th month after tests confirm my clot is gone. My side effects are Lower back pain, spine pain, hip joint pain, arm weakness, broken up sleep, & breathing (such as deep inhalation) But when I go on the xeralto form there are so many others out there that have my side effects and worse!
My doctor was also the same, when I tell him all what I’m feeling he says
“well thats something else” Wow!
So since I have a high tolerance for pain, I am just dealing with it and in hopes I’m off this blood thinner for good by August. As for my family and husband, I’m right there with you. I don’t think they get it, and that I should be fine and start adding more exercise to my day besides me walking, its Maddening!!
Did you experience any hair loss on Warfin? My doc. wants to switch me from Xeralto (2 months w/ weird and terrible side effects) to Warfin. I’m hesitant because of constant blood testing, dietary restrictions are bad enough but I can’t lose any more hair! Lovenox causes weight gain! I might as well stay on Xeralto for a few more months. I’m tempted to tell Hema that I’m going on aspirin, and natural blood thinners. I’m at the end if my rope with all of this pharma deboc.
Ask your doctor about cerveza that’s what I was put on after my hospital stay through my primary doctor there is no diet restrictions and you can get a coupon for $4 for each refill don’t believe I had any side effects from it just the normal healing process and I’m already bald with shaved head so don’t know about that
Hi!
I would say xeralto might be a better option for you, only because there is no blood test monitoring or food restrictions other then no grapefruit. I do not feel tired or rundown on xeralto. But I do have many side effects from it, but I’m learning this is what it is and I try and stay positive I will be off them sometime soon. I too have been reading about blood thinning foods and a daily aspirin can be just as effective, and I plan on talking to my doctor about that when i see him. I know these doctors must get something out of dispensing these drugs.
No hair loss but was on warfin for only six weeks. I do take aspirin everyday now. I was lucky a small PE in lung that’s healed now. I was not going to go on any blood thinners that have no antidotes! *ell no!
I ve just had a second P E out of the blue – though I think it s car travel that brings mine on (I m a nervous passenger following a motorbike accident in my teens) My first P E at aged 61 was after taking Picolax for a colonoscopy, which apparently dislodged a D V T in my right leg and put small clots on my lungs. I was so ill the first time and with a lot of research myself – I lost count of the docs who poo hoo ed me I firmly believed that a tick bite I d had a year before had lain dormant and that I had Lyme disease. I was ill, though not bedridden for two years. I was on warfarin for 6 months – which I hated. This second one came out of the blue – I d been feeling so well & done my spring cleaning for the first time in four years. I had however had a stressful time – loosing my mother and my 12 years older husband having a quadruple bypass. This time I had a wonderful hospital experience compared to last time and I m on a new drug Rivaroxaban which I m feeling very positive about until just now. I ve been waking in the night in pain (all mostly gone in the day) so get up make a cuppa and felt a sneeze which I half sneezed and wouldn’t t come out instead it bought back the bad pain in my lower right lung & going up my neck. Did it dislodge a clot? The quandary I m in is the specialist said I don t want to see you back here with pains thinking you ve had another but the discharge notes said to call doc, 111 or Emergency no. for seven symptoms, four of which I ve had since leaving hospital. I couldn’t t get an appointment at G P s initially for a fortnight ,but when she phoned me to check I d got the medicine following me copying my discharge notes she reluctantly agreed to see me in a week – which is rubbish – after leaving hosp A & E after a day and such an event the G P or nurse should be available as and when required not a weeks time. Thanks for my moan and It s lovely to write this knowing that you re not being thought a hypochondriac or just plain not believed. Positive thoughts and good recovery for everyone Louise
Hi Louise, so you were off blood thinners and then had Lyme Disease symptoms or tested positive for it? And then you had another clot years after the first? Will you be on Xeralto for life now? Have you been tested for genetic blood disorders? I hope you were told that recovering from PE has similar symptoms to Lyme Disease. Fatigue, weight loss, depression, headaches, body aches etc. etc….I’m going by your idiomatic phrases that you are from the UK. I realize that socialized medicine is different than in U.S. but please try to be referred to a Hematologist to sort out your blood work. Have you had CT scans of lungs? Hope you feel better soon.
Thanks Chaz. I never was able to get a test for Lyme (although there is not much available here in the U K . A group of sufferers and their families have just had a protest outside 10 Downing Street – I think – about lack of testing etc. ) That was the trouble with me – all the docs said I d had a P E just take the six months to get over it. I feel so much better this time that I m still sure there was something else going on last time and I knew I d had a tick bite. Thanks Sara for reply ( Sorry I made it sound as though my husband had died from his Heart surgery – he has made an amazing recovery. )One more question I shall put to the clinic when I go ,but I don t know if anyone can help me with. As I ll be on Rivaroxaban for life ( I m very pleased to be on it at the moment as my I N R was so high I need to get rid of the blood clots and my blood needs to be thinned but, six months down the line I shall worry about the bleeding issue so is it possible to carry an injection kit of vitamin D in case I suffer major bleeding in an accident or similar.? Thanks for this site. Louise.
I’ve never heard of vitamin D serving as an antidote for Xeralto. Why do you have to be on blood thinners for life? Have you seen a Hematologist?
Got first appointment at clinic today for heart echo scan to see if any heart damage this time (last time I had a floppy valve(?) The clinic is to find out why I ve had another unprovoked attack. Sorry got wrong Vitamin should have been K but that s only for warfarin. Sara suggested wearing an alert bracelet which I will do.
Has anyone had a doctor discuss with them the post-PE syndrome and the recommendations for recovery from same (analogous to PTS)? European and Canadian doctors are currently studying what they have termed the post-PE syndrome, and how to help treat it, but the results of the studies will only be available in 2018. It appears that they have concluded that while only a small subset of PE survivors develops CTEPH (pulmonary hypertension), many more still have shortness of breath and other symptoms years after the PE, without having developed CTEPH.
The European doctors’ analysis can be found at:
https://www.researchgate.net/publication/265015787_The_post-PE_syndrome_A_new_concept_for_chronic_complications_of_pulmonary_embolism
Hi to all!
I’m not much of a sharer but this website has kept me sane this past week and I’d like to thank all who did share . Diagnosed on Tuesday with dvt and bilateral pulmonary embolism . I walked in with a sore calf…..shocked doesn’t quite cover it. I’m 43, I opted for being in a medical study sponsored by Janssen and am taking xeralto. Just a little background there. I’m still reeling to say the least.
Hang in there Michelle! I had a PE in April, and I must say, it turned my life as I knew it upside down! Hang in there with X as it has some side effects that I eventually got used to. I’ve been in Xarelto since the incident. I’m hoping to be off it by October. Do see a Hematologist and Pulmonary doc. Lots of rest, and walk as much as you are able to, if you smoke, quit, if you need to loose weight, do so, alcohol and X is unknown but I found that one glass of wine is my limit. Find someone to talk to because emotionally you may be a wreck right now. I had to get a prescription for Ativan for anxiety (helped tremendously!) and find out WHY did this happen?! My Hematologist discovered that I have Factor V Leiden, which is a genetic blood clotting disorder. Surprise! At 47 I find this out! I’m lucky I didn’t have an incident in my 20’s whilst smoking and taking birth control pills! My life has changed completely but with time I am feeling better both physically and mentally and you will to. Please keep in touch, if you need some moral support and advice. I’ve been where you are and it’s a very scary place. You are not alone and it does get better! 🙂
I’d like to thank all for your stories and input. It is comforting to know about different situations. It is a scary time when suddenly one is faced with a serious dilema such as this.
On the evening of June 1, I couldn’t breathe while in a prone position. I struggled for most of the night while my husband slept peacefully. We were out of town and I hesitated going to an ER 2 hours from our home; on the way home I set an appointment with a pulmonary specialist. I had seen him 6 weeks before as I was experiencing shortness of breath. At that time he had me tested thru a breathing test. Results were mild COPD (I was a former smoker, who kicked the habit 5 years ago). I am 74 years young and was biking 1/2 hr. everyday with a slight shortness of breath. He prescribed albuterol inhaler as needed.
Up until that visit I was biking 1/2 hour a day, most days. I did experienced a heavy breathing as I began to ride, but I took my time relaxed and got thru my ride As the shortness increased I stopped exercising (about 6 weeks) before experiencing the worst condition that prompted me to see him again.
When I showed up in his office 2 days after my latest episode, he took a look at my ankles (major swelling) and said this is a serious situation possible cardiac failure and admitted me to the ER. My oxygen levels were super low and I was put on oxygen immediately, An EKG, ultrasound of both legs (nothing showed), a CT Scan of lungs (2 large bi lateral blood clots, the culprits), echocardiogram (showing an enlargement on the right side of the heart), they felt it may be from the stress placed on the heart from the clots. The echo card. showed a 70% function of the heart (they said that was good). I was put on heparin and blood pressure meds to control the high readings. After 2 days they took me off the heparin as they were going to send me home and replaced that with Eliquis. A hospital cardiologist came in and said I insist that you be monitored for another day or two before being released. My meds: Eliquis 2xs a day, along with zestril for blood pressure and lipitor to protect the heart until I was able to have a stress test at a later date. I am home now and on oxygen, I cannot walk more than 2 minutes without oxygen before experiencing a plumet of low oxygen levels. I sleep with it and use it for most of the day. My clots were unprovoked, no surgery, no accident, no excessive bed rest or from extensive travel.
My primary guy wants to keep testing to see why this happened. So far, a mammography (clean), ultrsound of abdomen showed a couple of gall stones that are not in a dangerous location,showed an inflamation of the kidney (the thoughts were that a stone may have passed causing that inflamation) so a ct of the abdomen was ordered and the results were good, another blood test result, okay.
I continue to be on 10 mgs of zestril 2x’s a day, along with 5mg of Eliquis 2x’s a day
and 40mg of lipitor 1 x a day with protonix if needed for acid reflux.
It has been about a month now and I keep researching (probably the worst thing to do) as to when these clots will dissolve.
My breathing has not greatly improved, so I know that they are still there. Another ct scan will be given mid August along with another test to further evaluate.
I am being seen by primary, pulmonary and heart doctors. The primary guy wants to rule out any cancer possibilities. I guess, I’m glad he is so thorough, but worried each time another test is performed.
Hanging in there, hoping for improvement is all any of us can do.
Good luck to all!
Did they check for genetic blood disorders? Good thing they are screening for cancer as well. Seems like you’re in good hands. Take care!
Thanks Chaz. I have not been notified of genetic blood disorders as a possibility. However, I will ask at my next appointment. I do know that a second cousin had a blood disorder, however she lived a long life with it.
It’s worth the ask.
Ask to see a pulmonologist to rule out C-TEPH (pulmonary artery hypertension). Regular blood pressure melds will not help this condition. Your symptoms seem consistent. C-TEPH leads to right heart failure. If you do have this, you may need a thromboendodardectomy surgery, where they clear the clots out of your pulmonary arteries. This surgery is major and should done by an extremely experienced pulmonary surgeon specialized in thromoendardectomy with a successful track record. I wish you blessings and a speedy recovery.
CJ: Thanks for your input….you were right! After a referral to Cleveland Clinic in Weston, Florida, my new pulmonologist ordered a right heart cath, along with a VQ Scan which confirmed CTEPH. He is treating it with Adempas (needed special approvals). I have been on 1 mg 3xs a day for 1 month at this time; just received my second batch upped dosage of 1.5 mg. 3xs a day. Will see my new pulmo the first week in April to discuss further. I am 75 years old and I believe not a candidate for surgery. The Adempas should relax and widen vessels and arteries to allow for better oxygenation. Hopefully, this will work. I will keep you posted when I know more. At this time I had to cut my blood pressure meds in half as the Adempas also lowers pressure. He also prescribed Tudzora Pressair inhaler 2 xs a day.
Five weeks after my second P.E. I think I m doing really well this time – feeling better each week and exercising more. We are having a few days away at the seaside – I was really pleased with myself – I actually bathed in the sea – Previously a strong swimmer I didn t actually swim in the sea as the breakers were too strong and I didn t trust myself to be able to stand up again (I m 65). My husband a non swimmer questioned me as to why I didn t swim and when I told him he really upset me by saying he didn t think my present health situation was as serious as I was making out – I very rarely tell him about my progress and no one ( apart from three close friends ever ask me how I m doing) I wanted to share as it helps me cope – I read Louise Hay and keep telling myself how much I approve of myself but sometimes it just doesn’t t work and I feel lonely and that no one understands but love this site as I know I can write the above and anyone reading it will understand Thanks Louise
Louise,
Most people don’t understand the hurdles we must overcome. Keep your spirits up and share with the great guys on this site. It certainly helps to know we are not alone in this.
My oxygen levels seem to be increasing. I can go most of the day without it. However, moving around lowers it quickly and I need a oxy hit to keep it stable.
I tried driving with my portable oxygen 2 days ago. I felt like a normal person going to a food store. With the help of an electric cart I was able to do a little shopping.
Every day is a small achievement of progress. My primary said that I might require oxy indefinitely. “Don’t be surprised, I don’t want you to be dissappointed”, he said….both he and my pulmonary seem to feel the COPD may be the reason in addition to the bi-lateral clots”. I choose to think optimistically and will await the second round of tests in mid August of another Echo Cardio along with another CT Lung Scan to see if these clots have been absorbed.
All we can do is hope for the best outcome.
Five weeks on from my second P.E. I ve just had a summer cold- you d think just a cold but no -it became a cough laryngitis bronchitis – For two days I felt SO ill & only took paracetamol as was worried about aspirin in other over the counter products and then it started again – like I remember from last time – like I have an alien living in my body attacking me with a pin sized dagger first in my foot, then ankle, then stomach. I ve just come back from the doctors on another matter (having had to wait 3weeks -rubbish) and she said it was just a cold nothing in my lungs despite coughing up a load of junk. Is it that because my body is still recovering from the trauma of the P .E. that I felt so ill? and I don t believe as a doctor said to me last time that the alien stabbing me is just anxiety- I think it s the blood thinners making the nerve ends more fragile so everything hurts more than before. Has anyone else experienced anything similar? I feel I m being a whimp a lot of the time but have experienced pain previously e .g . having 3 kids and not made any fuss.
Hi Louise,
I too am on blood thinners and on my 5th month taking them and I have severe joint pain on them and in the earlier months I had quick stabbing pains in my thighs so it can very much be the blood thinners that are causing what your feeling. When I asked my doctor about the stabbing pains he said “I don’t know that’s something else.” I was left clueless. By the 3rd month the stabbing pains went away. So Hang in there, your body is under going a lot right now and also has to get use to the blood thinners too.
Hi, In December of 2015 we were driving south. When we stopped for the night in Va I got out to check into our motel and I found that I was having a hard time breathing so my husband called 911 and was taken to an emergency room. Note I didn’t have any chest pain, just difficulty breathing. after numerous tests I was told that I had numerous small blood clots in my lungs. I was immediately put on ephrin and transported to a nearby hospital. After more numerous tests I was told that there were no more blood clots in my body and that it would take 4 to 6 months for them to dissipate in my lungs. I was then put on xarelto. After 3 days in the hospital we were told that we could go home (Maine) and to see my primary Dr when get home. After more test and follow up visits he did tell me that only about 80% of these clots would dissipate and the rest would adhere to my lungs anf form a cocoon and would never travel anywhere and that I would be fine. My question is, when I over exert myself I find that I have to sit down for a short time to get my breathing back to normal and then I’m fine. Is the 20% of the clots still in my lungs causing this or is it because I’m 73 years old?
Arlene,
I too am 74 yrs.young; or at least I thought young. From not taking any meds all my life to this Eliquis, Blood pressure meds and lipitor is a complete turnaround for me.
As for the clots dissipating my pulmonary dr. seems to think it takes around 6 to 8 weeks. I’ll find out in a couple of weeks the outcome. Sitting allows me freedom from oxygen. Once I start moving about I drop like a rock, so oxygen is needed.
I got a couple of suggestions from another brother on line. Good info on webinars on Facebook Dr. Noah Greenspan, Pulmonary Wellness.com. He had many good speakers giving great info. It all helps, knowledge is power. Hang in there my senior buddy.
I had PE back in June 2015 and was in the hospital in ICU Heart from Monday through Thursday. I have asthma and wasn’t getting better prior to being in the hospital and kept going back and forth to allergist and pulmonary specialist and sorry if I misspelled. I would feel like I was going to collapse just getting to my car from my apt or job. My oxygen level was low so they ordered a CT scan and after that test I was admitted to hospital and was on two medicines and came home with one. As a female I had a lot issues with bleeding on periods and it was difficult as a wielding and single mother. I went back to work that Monday or Tuesday. I to this day feel extreme exhausted and can’t do much. I work full time. My daughter is an adult but I pay all the bills. Now I have been having back issues and upper leg is bothering me. I was walking out of the building from work and all of sudden I barely could walk the pain in my leg was so bad. I have seen a doctor and told him I have had blood clots and so far I have just had x Ray and told I have tendinitis. I was just told by my primary that even though I took test and it is not something in my family history and went off blood clot meds within 6 months that they can come back. Now I’m not sure that I should be requesting additional test or what.
I had several large blood clots in my lungs and told from taking birth control bills
Is it just me or what specialist should we follow up with? Also when I go to Mall and walk or do anything like grocery shopping extreme tired and sweating is horrible
Linda, I would immediately get a D-Dimer test. Make an apt. ASAP with Pumonary Doc. Take daily aspirin therapy if not already. Tendinitis? diagnosis from XRay? I’m sorry but I am quite skeptical when it comes to the medical bafoonary sometimes. This just doesn’t make sense to me. You don’t order an X-ray when patient is afraid of clots again!
Amen to that a D-dimer and a cat scan if possible
I’m 20 years old and I was diagnosed with a pulmonary embolism a month ago. I was in the hospital from July 26-August 3 and 3 of those days were in the ICU. Along with the PE I had pneumonia and as a result of both of those I had pulmonary infarction and pleurasy. I was reading a few comments about people feeling brushed off after and that’s how I feel too. The doctors all think because I’m so young my body will be able to heal and I’ll be perfectly fine. Mine was caused because I started taking birth control and we found out while I was in the hospital that I have a prothrombin gene mutation. I’m back to work and school now, but I am so tired, I get out of breath easily, I’m still in pain, and I’m coughing a lot right now. I know recovery is going to take a while, but I feel like people think I should be better already and think I’m exaggerating. I’m scared I’ll have another one and I’m tired of hearing that because I’m young I should be okay. Me being young does not change the fact that I was sick and I had damage to my lung. It’s going to be a while before I fully recover and I don’t think people understand.
Hello!.. im 40 had this portal vein thrombosis after a cesarean section. Been 3 1/2 yrs with 3mg warfarin. Still waiting for my next ct scan in October 2016 if my clots still there in my portal vein and continue my warfarin treatment not happy with it but its the best choice for my tx…fingers crossed that im free frm clots. My hematologist told me that she will put me in aspirin if my clots be better.
Hi,
I am 33, and had a clot in my left leg from my foot till my groin. I have always been doing some physical activity and playing outdoor sports.
Did not know I had it as did not have any pain or swelling. One fine day in office my leg got swollen and starting paining severely. Went home and put some ice and the next day went to see my GP. She sent me for an ultrasound and found a huge clot. From there went to ER and they did a CAT scan and found small clots in my lungs.
That explained the shortness of breadth. Doctor said you are lucky to be alive.
Have been in the hospital for 3 days on Hiaprin and then on Xeralto everyday.
Swelling in the calf area is till there but reduced a bit. Have been jogging 4-5 kms and cycling 10-12 kms daily and its helping.
Doctor did some tests for the cause of blood clotting and found I have GENE V LEIDEN condition. So basically a bad gene. But it was done after I was on blood thinners and then another factor came up positive but the reports clearly say that it might be wrong as I am on blood thinners. So waiting to be off the thinners and getting the results done to confirm. Doctor is saying to take thinners for life.
Best of luck to everyone and take care.
Hi KK, sorry to hear about your situation. I had an unprovoked PE in April, no clot in limbs found. I was tested full blood panel after discontinuing blood thinner (Xarelto) for 24 hrs. before test. I was positive for Factor V Leiden Heterozygous (one copy). Was your clot/PE provoked? Do you have a Hemotologist? Good luck! It’s amazing that you’re exercising! Good for you!
The peace and this comfort this site has given me is beyond belief. I think after awhile, although you know it’s a physical thing you do start to wonder if it’s all in your head. I’m 22, never drank, never smoked, weigh a few more pounds than I should but go to the gym and have a busy life. I got shortness of breath at work (26th July 2016) and went home sick thinking I just had a chest infection or that winter bug that was going around. I waited until the next morning to see my GP and he only tested me for a clot because my sister had just had her second DVT and been diagnosed with protein S deficiency. Next thing I know it’s get to the hospital right now…but even in ED nobody thought I had a clot, I was put on clexaine and waited another day to get a CT. First they say I can go home in a day…then they see my CT with all my bi-lateral PEs and suddenly I’m definitely in hospital for at least a week. If I hear the phrase “you’ve had a serious medical event” one more time I’m going to get it put on a tshirt I tell you. They all tell you you’re lucky to be alive but they do t tell you where to go from here. They sent me home only to have me come back the next day in pain that I didn’t have before. I couldn’t even walk to the bathroom or shower or dress myself because of pain and SOB. The loss of independence overnight is terrifying. Two weeks after discharge I go back to the ED…I wanted to know why I wasn’t any better. No one had told me at this point that it might be months. I had a partially collapsed lung where a clot probably damaged the tissue of my lung. More pain killers, medications to help with the side affects of the painkillers…I’m like a one woman pharmacy I’ve even upgraded to a daily pillbox so I can tell if I’ve taken my AM & PM Pradaxa (a blood thinner which it seems like no one else on here is on). It’s 7 weeks later and the worst thing is people are expecting that I’m better now. I’ve had to push my study till next year and I can’t work. I wish I had a giant cast or something…but its internal. I worry about getting another clot…or that one of the many I have will move to my brain or my heart. I don’t know if shortness of breath gets worse the more you try to do, but it’s not good for my mental health or the rest of my body to sit in a chair all day. I literally spent 23 hours in a chair for over 2 weeks because I couldn’t breathe lying down. I don’t know what symptoms should concern me, I don’t know when they ask me is this normal what that even means now…I feel like cancelling my gym membership is a sign of defeat but I’m still living at my parents house because I can’t climb the stairs at mine. What do you do when all your meds seem to have the side affect of depression and anxiety and your circumstances don’t exactly make you overjoyed…not to mention the shortness of breath feels like a low level panic attack 24/7. 8 weeks ago I hadn’t been to the doctor in a year. I don’t want to be stuck on medications for the rest of my life…I don’t want to take anti depressants to treat the side affects of the other drugs I’m on to treat the pain of the blood clots I’m taking thinners for. I know I’m blessed… I know I’m lucky to not be in the 25% that die instantly…but I can’t just sit on my hands for the next 12 months waiting…waiting to be told I have lung damage or heart damage or another clot. I just don’t have the energy right now to do anything else. I worry about my family and what the stress of this does to them. I refuse to let this be my identity…there is more to me than this…even though right now it doesn’t feel like it.
It can take six months up to a year before your lungs fully recover. Everyone is different. It took me a good two years before just washing dishes left me kind of winded. Just talking right now is going to make you feel breathless. This is all a normal part of the recovery process. Being depressed and anxious is also another part of the process. Taking pills is hard to get used to, but eventually it becomes a normal part of your daily routine. I had an extensive DVT and large bilateral saddle PE’s in 2012. I have since found out that I am a diabetic and I take insulin for that as well. I’m on at least 7 different medications, including some pretty heavy painkillers, and an occasional inhaler for my lungs. I have chronic pain in my DVT leg due to damaged veins.
One of the reason why you’re having a hard time walking is because you probably have a DVT as well. As far as your clots moving or getting worse, that is not going to happen. You’re on blood thinners now. The blood thinners do not actually dissolve the clots, but they stop new clots from forming, and they stop the current clots from getting bigger. You are safe now! I know It doesn’t feel like you are, but you’re safe. The only thing you need to look out for is chronic clots in your lungs. Very few people get this, but if you continue to have breathing issues for longer than six months (I mean if you never have any resolution of your symptoms) ask your doctors to test you for Chronic Thromboembolic Pulmonary Hypertension. This is very unlikely to happen. I just tell you this so that you don’t have to fumble around for a diagnosis if you ever have any issues in the future.
Also, keep an eye out for leg issues if you have a DVT. You can ask your doctor to prescribe you medical grade compression socks so that you can wear them to help with the swelling in your leg. Remember, they checked your oxygen levels and vital signs before they released you from the hospital. You’re all good to go. When I was released from the hospital after 7 days, I couldn’t even walk to the car. I had to be wheeled to the car in a wheelchair. My leg was so bad before I was admitted into the hospital that I was literally dragging it across the floor.
I don’t know for sure, but I think collapsed lungs can resolve with time. You can ask your doctor, or maybe take a peek into your hospital records to see if you had a pulmonary infarction. That would be the only thing that would leave permanent damage to your lungs; but even then, your lungs would compensate for this. The good parts of your lungs would more than easily make up for whatever small portions had an infarction. I don’t mean to scare you with all of this. You just need to know what to look out for.
Doctors never explained anything to me and I spent months living on the internet searching for answers. I also have three clotting disorders. One of them is a really bad one that needs a lot of monitoring. You should be all good with the meds they have you on. Warfarin is a real hassle; but with APS, I have to stay on Warfarin where my INR can be monitored. I have to have a higher INR “3.0 – 4.0.” I’m so glad you have a good doctor. Most people are given the run around for weeks, and even months; sometimes until they just collapse and die.
Your doctor saved your life by ordering the D-Dimer test that I suspect he ordered. I hope you feel better soon. If you need something for your anxiety, please let your doctor know. And I hear you about the major medical event crap. They kept telling me that I was too young to have blood clots. No one is too young to get sick. It’s that kind of thinking that gets people misdiagnosed. Hang in there! You’re a survivor. Also, don’t let anyone force you to do things that you’re not ready to do physically. You will get better in time.
Once again, please do not get scared about the stuff I posted about chronic complications. These complications represent only a very small portion of people. I also wanted to tell you that your doctor can order a full pulmonary function test to see how well your lungs are working. I would wait a few months to ask him for this. It will show if the partially collapsed lung has resolved. Also, the DLCO gas exchange test will tell if there are any problems with the lungs. That should calm all of your fears. Just take it easy. There were days months after my release from the hospital where I would just sit in the car for 15 minutes after I got home from grocery shopping. I was too tired to get out of the car. All of this is normal. Your body has been through a lot, and it takes a lot out of you to recover. I know some people who were out of work for a few months, and some who went back to work after a month. Everyone heals in their own time. At least you’re not on Warfarin and having to worry about whether or not your INR is constantly therapeutic. Having god thinned blood is one of the main keys to a successful recovery. With the meds you’re currently on, your blood is thinned through a different clotting mechanism than what Warfarin targets. The twice daily pill is all you need to take in order to be therapeutic and completely protected from more clots. You’re going to get better in time. Don’t rush things. Hang in there!
Your message applies to all of us here and I want to thank you for reassuring everyone on this form. Sometimes I think we all forget the good with the bad and fall off the wagon. Truly love your positive out look!
I am a 6mo survivor and I too am educating & working on this situation to never happen again!
Be cautious what you research on the Internet because it can make you think the worse so tread lightly. Wishing you the best of health!
Hi Liz, I know your world has been turned upside down and it isn’t fair at all, in fact it sucks! But you are still here, you have support to get through this and will, you are on a very good drug (from what I’ve researched). Blood thinners are tricky, lots of side effects to get used to for some, others have no side effects. It’s going to take time to get better but the good news is that you are young and will heal quicker than an old geaser :). Please find a good Hematologist and Pulmonary doc. It is so important to have a team of docs on your side. Yes and tread lightly on internet info. as recommended previously, it could be more confusing and stir up more unnecessary anxiety. Speaking of anxiety..Ativan has saved my sanity!! Take care! You are not alone!
Hi Sara;I’ve been in touch with you before but I am seriously in need of advice.My husband had pneumonia;multiple epileptic seizures and multiple pulmonary embolisms in February 2016..He is getting worse day by day.Very breathless justgetting washed for instance.He is very depressed and says he has nothing left to live for.I phoned the doctor who said she doesn’t see the need for a house call as nothingseems to have changed but she hasn’t seen him.He is also taking Setraline anti-depressants which aren’t helping but no-one seems bothered.I am really worried.Can you give me any advice?Nothing has been explainedto us and the Doctor I spoke to on the phone this morning would have been as well saying it’s all in his head.This situation is very frightening and I don’t know what to do anymore.My husband is 68 and it’s just like he’s been written off.
If your husband is not getting better with his breathing, it could mean that he has chronic blood clots in his lungs. Is he on blood thinners? There is a condition called CTEPH, where some of the blood clots in the lungs do not completely dissolve. This can lead to pulmonary hypertension and unresolved breathing symptoms. The condition usually happens within the first two years of having a PE. I’m not saying that your husband has this condition, but it could be a possibility. They can do an echocardiogram on your husband to see how high the pressures are in his heart. Then they can do VQ scan to see if there are any old “chronic” blood clots in his lungs. If he is not on blood thinners, you might want to get hi back on them. I would also ask your doctor to order a D-Dimer test. It will show if your husband is having active blood clotting going on anywhere in his body. Pease look into this info and keep us posted on how your hubby is doing. Here is a website that explains what CTEPH is: http://www.cteph.com/basics/symptoms-and-risk/
Thank you for this very informative site. After a car accident my husband later developed blood clots. After a few Dr appointments with the complaints of shortness of breath and swollen leg they finally sent him to get an ultra sound. Turns out he had several clots that had already traveled to his lungs and one in the leg. They admitted him to the hospital immediately. They only kept him for one night. Although he just wanted to go home I was completely confused on why would they discharge him so soon. I will be sharing this web sight with him tomorrow because he is going through all of this. It is good to know what to expect on his journey. Our life has changed since his blood clots. I try to be strong for him and do what ever I can manage. It’s just hard to except help for the things that you once did like the simple things that we take for granted . Thank you again.
I have been on eliquis for almost a month now for a PE and I’m exprencing some symptoms like shortness of breath rapid heart beat chest pain muscles pain confusion blurry vision and nausea. I have been to the emergency room on a couple of occasion but the keep saying it’s not my heart no new blood clots all labs were fine but I still feel the same. My Primary care doctor referred me to a hematolgis and pulmonaligst and the ER referred me to gastronologist. I feel so out of control because I have no answers as to what is going on with me.
Four years ago, another driver ran a stop sign at speed and totaled both cars. My left knee apparently hit the steering column, and it swelled up pretty quickly. 12 hours later, my whole lower left leg was swollen. I went to the ER to have it checked. For some reason, the D-dimer test was not done until 8 days later. It was positive, at nearly twice the normal limit. Ultrasound was done the next day and was negative. Nothing was done until several weeks later, when I first attempted to ride my bike to my new place of work. Suddenly I realized that I was severely weak and short of breath and in pain. I turned around and collapsed when I got home. A few weeks later, I told my clinic about this, and they gave me an EKG and said that I had atrial flutter and put me on warfarin and metoprolol. I reminded them of the injured knee and D-dimer score, but no one took action. Suddenly last summer, 3.5 years after the accident, my pulse had the normal sinus rhythm (not the double-beat of atrial flutter, which I can feel in my neck), and I can bike without painful shortness of breath. In hindsight, I was walking around with a pulmonary embolism for 3.5 years, and it spontaneously cleared up. I found a couple of papers that said that PEs can cause AF, not just the other way around, which is all that the docs had said to me. I told my primary-care doc all of this and was referred to a cardiac specialist who spent 2 hours trying to convince me otherwise, I think out of fear of a malpractice suit. I have 2 questions: (1) could a DVT (clot) move to the lung in less than 9 days?; and (2) could a PE take as long as 3.5 years to clear while taking warfarin? Thanks.
Hi…wow a lot of people here suffering with recovery from DVT and /or PE. It’s not easy to explain to others.
I had a partial menisectomy and cyst decompression on 12/1/2016…complain twice about my calf circulation to my surgeon. He told me I was fine and was dismissive. 18 days post surgery I felt a snap in my knee doing heel slides and ended up with horrible inguinal pain..my leg swelled 2 tines and turned red. Back to doctor and then finally ultrasound and off to ER. Have a clot in my greater saphenous vein, popliteal and my femoral vein up to my abdomen.
I’m frustrated because my doctor didn’t listen to me. More frustrated because now hematogist is suggesting Lyme disease I was treated for was a possible hyper coagulation factor. It was on my chart. I called my surgeon on it and he didn’t know. I feel angry about this. He said I just would have been on thinners post surgery. That pissed me off even more because, yeah, and I wouldn’t be now struggling with rehabilitation of my knee which is frozen in limited ROM now.Does anyone here have Lyme”s and know about this factor? I see the hematogist tomorrow to get all the prothrombin blood test results.
I want to go off this shitty xerlato drug. I feel like I’m dying. I’m tired and weak. I play mandolin. .one of my small joys..all my tissues are swelling. I never had carpal but it’s now raging. I even feel pain up by my elbow in the median nerve. It shoots into my thumb. Xerlato overall is making me feel like absolute shit and then there’s the worry of cutting or injuring myself. I’m packing on weight, too..I did this knee surgery because I’m an avid hiker and paddle boarder. I’m not seeing the light at the end.
Anyone on xerlato with similar problems, esp the tendon issues ? Anyone who had Lyme here?.
Hello everyone, my name is steve and I just went through this ordeal and as stated by many I am also curious about recovery and what to do and expect for here on moving forward. I am finding a lot more about my condition here on the internet then told by my Doctor or Thrombosis clinic. I was originally diagnosed with a heart attack but with further testing it came out to be a PE. I’m 49 and it hit me right out of the blue. With all the research, I find myself learning quite abit about the PE and how it affects my life. Its not to be dealt lightly and I am in for a different lifestyle for awhile until I get back to a normal feeling which may be awhile. Thank you to everyone for your input on here, it really help understand the seriousness of a PE and what to expect.
It took me 3.5 years. After a car accident that caused injury to my left knee, and a blood test indicating a clot, I developed atrial flutter that made me get painfully short of breath when bicycling or climbing stairs & trails. This spontaneously disappeared 3.5 years later, leading me to realize that the a-flutter was caused by a pulmonary embolism that dissapated.
Hi Steve,
I too had PE’s (saddle both lungs) in June. I was 74 and survived luckily. My oxygen sats have not improved since. Many tests later, the latest right heart cath and nuclear VQ Scan proved PAH Csteph. Pulmonary Hypertension pressures were very high and I was put on a rather new therapy (Adempas), it’s purpose is to relax the pulmonary artery and veins to reduce pressure and thereby give more oxygen. Most of the time I am on oxygen therapy.
It took 3 drs. before this discovery. You have to be pro active and if you don’t see an improvement, go for another pulmonary doc.’s opinion.
I live in South Florida and went to Cleveland Clinic for a third opinion. Both my former pulmo and heart drs. did not uncover this condition with Echo Cardio, Chemical Stress Tests and 2 CT scans. The gold standard is a right heart catherization and VQ scan. Hopefully, you do not have PH or PAH.
Keep being pro active.
I got about halfway through these and realized what I thought was one thing is actually another. I have had PEs all of my life due to a protein S deficiency. My first clot was in 1986, but the ones that almost killed me came two years later in 1988. I had clots covered both of my lungs and my lungs collapsed by the grace of God I made it through only to be told they had inserted and IVC filter to keep the clots from going into my lungs. Unfortunately I’ve had probably 15 since then and am now 58 years old and dying. The reason I am dying is because my IVC filter removal Stanford it is currently corroding and is in 3 pieces ones going to my heart and one is right at my kidneys. The only chance I have for a life-saving procedure is in California but can’t afford it. What I would like to say to you is that I have been going through this for the better of 30 years and the things that you were experiencing although there will be some did get better, you recover all of your life and the depression, anxiety, everything that you’ve talked about here is not going to stop. I’ve been on numerous psych drugs over the years I’ve only found one to help but it doesn’t cure everything. I’m not going to tell you everything that I have gone through because most of it is written in this blog, just remember that you’re going to be healing for the rest of your life. I wish you all the best of luck and if you have an IVC filter please, please get it check on a regular basis.
I was diagnosed with double lung PE on 12/6/16. Part of one lung has died due to the damage. I had no previous systems other than one day after walking stars. I became so short of breath I thought I was going to pass out. I woke up in the middle of the night with major pain in my right shoulder (which I found out later can be an indication of a lot of medical issues) and went to the ER. Within 30 mins, I had a CT, medications and a diagnosis. I felt like the rug had been pulled out from under my feet.
I expected to recover within a couple of weeks (that’s what has always happened) and was very discouraged when it didn’t happen. I’ve always rebounded quickly from medical problems.
I’m still struggling to breath and is 3/21/17. My doctor told me they’d repeat the scans in 6 months and run tests to see if I have a clotting disorder. I’ve just figured in 6 months I’ll be all better. Today I’m struggling to breath even on the oxygen.
I worry about losing my job due to having to be on oxygen. I have researched ADA, however, how long can I be protected? I’m so frustrated! I just want my life back.
I’m so glad I found your blog as it answered so many of my questions. Thank you for this.
I had tkr done on right knee 2/17/2017 I ended up with a pe I’m taking eliqis 2x a day.I have high blood pressure an diabetes. I scared an worried my knee still not bending. They talking about doing mua (manipulation under anesthesia) on my knee. I don’t know what to do or where else to turn too.
in November last year i was told i had a clot in my left knee and after a scan i was told i have a lot of clots in both lungs. It is now April 17th 2017 and feeling very tired, still some pain in my left lung and headaches.I cannot get my GP or my Doctor that was looking after me in Hospital to help me understand why i am not feeling any better. I know i am very old (76) but before i got the clots i was full of energy and was a member of a musical society, we did shows every year and i could sing, dance and act, now i can’t do anything without feeling dizzy and tired. my family think i am putting it on and should be better after 6 months.I am very down and upset and don’t know how to go forward. anyone that can help me i would be very thankfull.
Hi March the 9th this year I was admitted to hospital and treated for a stroke even though my head ct was clear as the Dr though I was having a stoke still after treatment was given I started making progress and don’t remember the day. On the Friday my head mri was clear so the got me out of bed sat in a chair and walked from the chair to the curtain at the end of the bed before walking I started to get pain in my right leg in the calf I thought nothing of it. Saturday they had me walk to the ward door and I could walk properly again didn’t think nothing of it but the pain started to get worse I had a heavy feeling in my chest and a bit out of breath thought it was my asthma cut the story short it came about that I have large multiple pe’s covering both my lungs and I have been recently back in where they can’t rule out that I may have had new small ones. I still get the same pain in my right leg when I’m a bed witch worry me. I walk about as much as I can but due to breathlessness I can’t walk far in my home I can’t go out. I’m on blood thinners and have had special blood test done to see if I’m on them for life or just 6 months. I don’t no what will happen at this appointment at the hospital I haven’t been told so looking for a little insight on what may happen and should I b worried about this pain in my leg that comes and goes?
Many thanks Julie
Recently, I had PE in both lungs, and DVT in my left leg. When the pain, shortness of breath, confusion and anxiety kicked in I knew I was in trouble, and thought I was going to die – I could not sit, lie down, slump forward or stand up straight and I was on a 40 minute commuter train from the city to home and I knew I had very little time to get help ~ I knew what was happening. Although I was scared beyond scared I managed to not panic and I focused on taking very short and slow breaths until the train arrived at the station and the ambulance and firefighters arrived. I landed a stay in the cardio ward of the hospital for six days. This is the second time I had PE in two years. You see, I stopped taking my Xarelto six months ago as I felt perfectly well and I thought I would not get PE again. Well, I was definitely wrong and now I have learned an important lesson. The hospital doctor told me I am lucky to have a second chance, and that I probably would not get a third. I am now following the doctors strict direction ~ it will be my priority. Medication, proper diet and exercise, sleep, and trying to stay positive is what I have to do. I will do what the doctor says. Even though my first bout of DVT and PE was two years ago, I still experience pain when I take deep breaths or when I cough, burp or have hiccups. I was told the pain is caused because of scar tissue in my lungs and that that pain will weaken over time but the pain will be there for the rest of my life. I can put up with it, but since my second round of PE and DVT, it hurts a million times more. The doctor told me that the pain will lessen over time, but again the pain will never go away. He also said everyone is unique in their recovery time. I hope to get back to normal as soon as possible.
Fellow PE and DVT peeps this PE and DVT situation it is not easy, but it helps to read your stories and realize that I am not alone in this world with this problem. Peeps, if you are not happy with your the care your doctor is providing, find another doctor – it will help you with your anxiety and piece of mind. I wish everyone good health and happiness always.
Hi Sara, my name is Sean and my wife was just diagnosed 2 days ago with bi-lateral pulmonary embolisms, clots in both lungs. She is being prescribed blood thinners for the next 6 months at the bear minimum. As it stands I am very angry/irritated with her attending physician in the hospital. She had an 8mm kidney stone removed about 3.5 weeks ago and when he started asking questions about her pain medicine from that procedure he pretty much insinuated that she was a pain meds addict because she took her meds from the kidney stone and was now asking about pain management for her PE. He isn’t our primary doctor but it is as if he thinks she is either making up the pain or blowing it out of proportion. I understand that she is going to have pain and discomfort for a little while but how long before it should be more manageable? To top it all off she has Crohn’s Disease also.
I was enduring the most violent pain I have experienced in my life…for weeks I could not move…been enduring extreme pain from multiple spine injuries from work meantime (5 yr work comp…exteme fail noones done nothing) Diagonsed with DVT, clots all over chest cavity. I cannot find anything to help..keep coagulating, no help with pain, lost everything. no money no ins its everything I can do to keep from suicide. Transportation, all gone. I am in LA..can anyone help? I cannot escpaet his pain I tear and yell all the time. DId eliquis for 3 mos, stil found new clots and more coagulation today. I have nowhere to turn no backup nothing. Someone please help!!! This has taken my life literally
On April 9th I was having what I now know is tachycardia and lung pain with a semi deep breath my internist said my lungs were clear and if the tachycardia didn’t clear up he would put me on beta blockers. (He could have killed me with his ignorance, needless to say he is not my dr anymore) After no improvement I made an appt. with a cardiologist but before I could get there I wound up in the ER where they found PE in my right lung and clots in my left leg. I got horrible headaches with heparin, Eliquis and Xarelto so I am on Warfarin. It has been a few weeks and I seem to be getting worse as far as breathing and faintness and weakness, I stand up and am woozy. After only an hour of exertion I need a whole day to recover. Is this normal?
I had a minor outpatient procedure on 4/17/17. Eight days later I was walking to my bedroom to get ready to go to sleep and felt like a ton of bricks hit me. I all of a sudden had terrible chills, my teeth were chattering, I was lightheaded, and it felt like every move I made hurt my chest worse than the move before it. It felt like marbles were being pulled through my chest. I could barely catch my breath. I am 33 and knew that a PE was possible but never thought it would happen to me. I made it to the ER and they did the chest x-ray and thought that it may be pneumonia. I was taken back to do a CT and within minutes of the test being completed, a doctor walked in and said that an ambulance was on the way to take me to a larger hospital about an hour and a half away. He was at the ER station trying to call the other hospital to explain that I was on the way and mentioned three times that “we need to hurry, this thing could kill him”. Not exactly what I wanted to hear being 15 feet away. I was in the hospital for 5 days and sent home. I still couldn’t lay flat for another week and a half. After a week at home, I had to get back to work. I am so tired all the time and have terrible coughing fits. I have two kids under 5 and it breaks my heart to keep telling them that I’ll play with them later b/c daddy is tired and needs a quick break. Everyone was so nice during the initial recovery but I fear that the support is waning and they don’t understand that I am so tired all the time. It’s been about a month and the pain is subsiding but I don’t feel anywhere near like I did before. Does anyone else have involuntary deep breaths that cause pain?? It’s like my lungs just take it upon themselves to breath as deep as possible. Hiccups and sneezes still hurt too. I know it’s still early but I feel like I’m looking up at a mountain and wondering how to get past it. Feeling like a hindrance and a burden, but I suppose it’s good to be feeling anything!
Try lidocaine patches. They are a cheaper alternative than going back to the hospital. It was explained to me that the PE causes scar tissue, so every time you breathe deep it irritates the membrane. The patches helped me deal with the pain until it subsided.
Yes had them same symptoms; took a few weeks for the pain to go away when you breathe in, sometimes changing the position you lay in can help some. They are no fun, have they put you on a blood thinner makes a big difference, found certain foods and spices can really help relieve pain. Acidic type fruits, pineapple tomatoes, using turmeric and garlic really make a difference. Hope you heal up soon and yes most dont understand what they havent been through. Hang in there
Hi Graham, I’ve just been diagnosed with PE in both lungs. Unprovoked and no other symptom at all apart from pain in my chest.
I too have the involuntary sharp deep breaths. I think it’s because I’ve been shallow breathing for a few days to avoid the intense pain and it’s your bodies way of telling you that you need more oxygen. Frightening stuff.
Omg I hope people still read this site I just found out I have a pe and I’m freaked out I just had a c section and that’s how I got it they say it’s a small blood clot in my right lung. I woke up two days after having my baby and I couldn’t breathe went to er Drs dnt really say much they just gave me lovenox shots and sent me home I’m so worried no dr I go to will explain to me what’s going on other than people die from this and that’s the last thing I wanna hear after having a baby and I have a 14 month old at home. Everyday I feel like I’m not gunna wake up all I can do is cry. So many questions no answers. Does anyone know if blood thinner will help save my life and prevent others from going to lungs I never even new I had a clot or anything and went to lungs so fast I guess idk how long till I know if it’s gone or will be gone.
HI
as you can see some longer than others
To all with clots try this it absolutely works!!
1)Hydrate, esp if you are on pain meds. 2 gal water a day
2) eliminate all sugars, breads if you can
3) Certain fruits veggies, spices flat out work!! Best ones are fresh pineappple, tomatoes…fresh galic Tumeric, Cumin etc. Go heavy on it with your meat. Grapefruit, basically foods that promote blood flow, thinning of blood..even vinegar type toppings. I have been doing this for 30 days and only woken up 2x at night with severed DVT pain it used to be constant. Google foods that work on clots.
Blood thinners alone wont do it…use that compression sock and slowlystart moving around…some walking, something. Every day stay active just dont overdo it.
Laying around all day/night wiht the leg up, sure safer but no circulation .Try it this absolulety works, I have DVT in 2 legs now all over my chest cavity bad so if it helps me it will help you. Your welcome, send me all your pain meds now. (just kidding guys) try the above.
Blood thinners will prevent new clots from forming. The body absorbs existing clots over a period of time.
was also told thinners reduce clotting
was on eliquis for 3 mos, had another scan done and they discovered new clotting
Started on Xarrelto? feeling a little better. Starting to wonder if any of these meds really work on clots or just help the blood find their way around til smaller vessels form to bypass. Obviously Im not a Dr…lol.
We all have to be proactive and not just rely on meds. diet and lots of water really really help. Thin it out and down goes the pain. 1 baby aspirin a day is safe and absolutely helps.
I was diagnosed with small PE in both lungs over last weekend, admitted to A&E after shortness of breath and shoulder/back pain. Given Eroxaparin injection before discharge then started on Rivaroxaban; 15MG twice daily for 21 days then 20MG once a day. I don’t feel any different, should I(?), I have been up and about and exercising with no apparent issues. Only since I have come home and started research that I have lots of questions I should have asked the Dr before I was discharged. Anyone new in similar position? Great site by the way, really informative.
Hi Shane. I’m similar to you in that I cam out of hospital 4 weeks ago and I didn’t really get a chance to ask many questions. I’m also on rivaroxaban and although I feel ok most of the time I do feel quite fatigued at times and slightly breathless
Hi Shane. It took me about 3weeks before I noticed any improvement, than another 3 until I noticed marked improvement. I’m six months out and still not fully recovered, but still hope I’m on the right path. Hopefully you’re starting to feel better by now, but as the post says, everyone’s recovery is different.
I had Multiple Sclerosis and stayed in hospital for 11 days. On the 12th day, i woke up with a terrible pain (calf muscle) and was admitted back to hospital. I stayed there for five days as they thinned my blood (injected tummy) and after being discharged, I used Xarelto tablets and painkillers for three months.
It is now four months since I stopped using blood thinners but I have pain due to the scar. I wake up in the middle of the night because of pain. What can I do to end this pain caused by the scar? I cannot sit for more than 30 minutes…it is like burning behind the thigh.
I have a blood clot in my right leg the Dr had me in bed for 2 weeks now when I am up for about a hour my leg and foot starts swelling bad the Dr told me it will take 6 to 9 month for the blood clot to leave was on shots and pills just on pills now my leg hurts a lot wish I knew what to do to get better fast
Hi Sara, Thank you so much for creating this support group. I am a 38 yr old Wife and Mom of 4 beautiful boys. I was diagnosed with a DVT this past Sunday. I was first given Lovenox at the ER and sent home,on Xerelto 2x day. I just found out yesterday that I now have a small clot in my left lung. Obviously, I am processing and going through the anxiety and fear associated with this. Almost everyone I know has been hospitalized for this but my Doctor says there’s nothing they can do for me and sends me home. He said if I bleed they will not be able to help me because of the Xerelto. I have a MTHFR Hetero A clotting disorder. No other history though and no other medications. He has mentioned a supplement called L Methylfolate. I live 30 plus minutes from the hospital in a very rural area. Does anyone have any experience with this and can offer advice on what to expect? Or if I should attempt to go to the hospital for chest pain? I am scared and I am not ready to leave my family. I was the primary source of income for our family. My children are so small and my husband needs a lot of help. Please any help or advice is appreciated.
Hi there! I’m a 38 year old male, father of 3 and husband to a very special lady. I was diagnosed with pulmonary embolism in both lungs and aortic aneurysm 4.3cm two days ago.
This all started about three weeks ago when I took myself to the ER for rectal bleeding. After many tests and CT scan with they said my colon was inflamed. The emergency department diagnosed me with colitis nonspecific, prescribed me two antibiotics and sent me in my way. About ten days later I was experiencing some more pains in my colon and bladder area, I returned to the ER. After many tests including a CT with contrast. They told me my colon and bladder were both inflamed. I was instructed to see GI specialist and set up colonoscopy. I did as instructed. My colonoscopy was set 21 days out. Two days after this i started feeling a lot worse and I went to a bigger hospital where I had several tests done and a xray of my abdomen. They told me that they could see inflammation and admitted me. I was put on a clear liquid diet for 4 days. On the 4th day s GI specialist did the colonoscopy with biopsy. The fifth day I was released and told the tests were clean. They prescribed me some medications and said IBS is what is wrong with me and the medicine would make me feel normal again. 2 days after release my arm was swollen,red,hot and the vein was hard in my IV arm. I went nail to the ER and they performed ultra sound on my extremities and CT scan with contrast on my chest. They came back stating I had blood clots in both lungs and an aortic aneurysm that is 4.3cm. They informed me that I needed immediate medical care at a larger hospital. I listened and went to the hospital. I was given shots in my stomach and oral medicines. After two days they were pushing for my release, they prescribed me eliquis and sent me packing. I have been home for 3 days and I still experience constant dizziness, sharp chest pain, dull piercing heart pain and infrequent sharp headaches in the back of my head that come out of nowhere and don’t last very long. I also have shortness of breath, chest feels tight and the bottom of my throat feels restricted when I breath. My question to you is, how long will this last? Thanks in advance!
Hi everyone. What a site to find. I went to hospital in June when I had trouble breathing. Turned out I had clots on both lungs and also in my back. Spent 4 days in hospital and given Apixiban 8mg which I’m still on. I’ve been to Dvt clinic, but no clots were found. Don’t know where this came from. I also have Myasthenia Gravis, and I am blaming the medication for this as I’m on high dose of steroids and Mycophenalate to weaken the ammune system so the steroids can work.
I struggle to do anything or walk anywhere as I am still out of breath and my back is still bad. I hate feeling like this. I have always kept myself busy working riding my motorcycle but now I can’t. Been off work since January with Myasthenia and now this. And to finish off I’ve just been diagnosed with obstructive sleep apnea.
If it wasn’t for bad luck I’d have no luck at all.
Great site. Keep it going.
Hi everyone. An update on my conditions. Still on high dose or apixiban for the p.e. But the main problems I’m have are horrendous. Having myasthenia Gravis, the doctor is trying to stop the double vision by having the steroids at 60mg a day. My weight has rocketed sky high that I can’t breath properly, my hands and feet are numb and have pins and needles. I blame the mycophenalate tablets as the side effects are in the list, but the consultant said it’s the weight gain. So I’m still in a bad way. As for work I am being made medically redundant. Being a truck driver it wouldn’t be safe. Never mind. Hopefully reducing the steroids will bring the weight and swelling down. Fingers crossed. Thanks all. Update you again later.
Hello all!
I’m Alicia, age 34 and was hospitalized for bloodclots in my right leg and lung. This came on in September, after having what I thought was a severe case of tendonitis in my right elbow. The pain moved up my arm and into my lung. After two nights and a day of bouts of painful breathing, my Mom called an ambulance and I was taken to the ER. Everything happened so fast… Machines, ct scan and being told I had bloodclots in my lung and leg and was a very sick girl. I was admitted to the hospital with no release date and put on heparin and antibiotics and fluids. Drs asked questions and said things I didn’t understand. Luckily my Mom was there and Dad flew down the next day. I was transferred to the bigger hospital the next day during the night and got a procedure done that ended up taking care of the dangerous clots in my leg and groin which had given me no pain but had left those areas numb. I was released on the fifth day and recovered at home. I was taken off B.c pills and am currently on Xarelto, blood thinners for life cause the clots were unprevoked and apparently run in my dad’s family. Fortunately I am on non work status due to a work injury back in june so I have been able to rest. I did have a relapse with my lungs, which set my recovery back, but my lungs were damaged, so recovery will take time. I have a diligent Hematologist looking after me who said to call if anything acts up badly. I’m still having breathing issues while walking or painful deep breaths when laying down, but I’m recovering. I managed to pass both my college courses this semester with A’s while dealing with clots and a lingering injury; ironically, I’ve only been further motivated to press on and be fully healed. What I’ve learned from research and time is, that healing from clots takes patience so your body can do its thing. I’m resting, eating healthy and staying busy with activities I can do. I’ve done research on foods that aren’t good to have a lot of while on blood thinners and find substitutes. Information helps me not to be anxious. Having my FL blue nurse check up on me helped too, as well as having family assist me with tasks and encouragement. Good doctors are important as is not stressing your body; I got a bit more pain yesterday than usual due to the extra stress from final exams. I’m still healing and long for my normal life again, but with health, you need to take it one day at a time, or one moment at a time. It’s tough, but I’ll make it through and am sure you all will, too!
I was diagnosed with a dvt and 3 pulmonary embolisms in september of this year, and I was in the hospital for 6 days on heprin for them and put on eliquis at home for 1 year but I see a vascular Dr but not a pulmonologist, and all of a sudden started coughing up blood again and getting nervous. I have severe anxiety as it is and depression and all of this makes it 100 times worse.
On October 2nd I broke my ankle at the beach, coming down some stairs. I had to have surgery that day, so I was in hospital at the beach for 6 days. Got ready to come home and I was told no weight bearing and take an aspirin a day. 2 weeks after I got home I started noticing what felt like a strong cramp in my calf. I elevated it and tried to ice it, but it would not stop. Saturday night I went to bed, from that point on for a week I knew nothing. I awoke in ICU with tubes in my throat and my chest. I was told I had two massive blood clots in my lungs. They had been removed but I was in tremendous pain. A filter was also placed in me. This is the first for my family and I was told I was a miracle child! God saved me, even my doctor told me this. I died three times before getting to Charlotte to have the surgery. Today 3 months later I’m still in pain. Very depressed, chest hurts, not every day but just about it. I’m on warfarin, don’t feel like working and I’m self employed so that makes it really bad for me. No energy at all. So I’m glad I found someone that at least knows what I’m going thru. I feel like my family is tired of hearing me complain. But I can’t keep it in all of the time. Pray for me please!
Hi everyone! I’m 24 years old and I just recently found out I had a PE.drs say it’s most likely caused from just having a baby. They did ultrasound of my legs and did echo of my heart and everything was good. I’m just so nervous! I was in the hospital for a week and all I kept hearing was that I’m way too young to be having a PE, which that scared me so much more! It’s only my third day out of the hospital and I’m just a nervous wreck! Paranoid all the time now thinking it’s going to happen again! They have me on 7.5mgs of Coumadin everyday for 6 months. I’m just so depressed I’ve never been through anything like that ever in my life! I’m just so scared !
Hi! I’m 24 too and the nurse were saying the same thing! “You’re too young” the only thing they can think of as to why I had a DVT and PEs in both lungs is that my Birth control pills were the cause. I’m completely scared and a nervous wreck over it. I seriously thought that my calf was hurting because of a leg cramp and that I was so short of breath because of allergies and my asthma. I keep having anxiety because I’m scared that I could have died if I just kept playing off my symptoms. I just hope it gets better.
Thank you, Sara. I am recovering from a “PE shower” where all lobes of my lungs are affected by hundreds of emboli. I’m a marathon runner, so this news of the long-term effects is depressing and concerning. I wonder will I every regain the stamina to run. Hope you are well today.
I am in the ICU now. Have been here three days. I have multiple clots on both lungs. I’m very scared . the doctors keep telling me I’m gonna be fine. But my oxygen level is worsening but I’m feeling better. Kinda crazy. I hope I make it out of here.
Man this article and thread makes me feel so much better that I’m not alone, but sad to see so many people suffering. Im a 32 year old female with a clean bill of health. On January 16th I broke my leg in Mexico playing beach volleyball – fibular fracture, that put my in a wheelchair for the duration of my vacation with minimal walking with crutches. I didn’t know it was broken for 2 weeks after I went home and had imaging done to diagnose. I was warned then that I was at high risk for blood clots because of the injury, being sedentary on vacation, flying, being on birth control and being overweight. 37 hours later, I was rushed to the hospital with shortness of breath, tightness in my chest, sweating, and feeling faint. An extremely scary time. I thought I was having a heart attack. When I arrived, my oxygen levels were at 87% so I was put on 3 liters of oxygen right away and that eased the symptoms. I was diagnosed with multiple bilateral submissive PE’s and a DVT in my injured left leg. I was put on blood thinners right away an needed oxygen for 48 hours. My heart rate would spike to 140 just going to the bathroom. The cardiologist performed a clot busting procedure through a Cath to my lungs that pumped TPA into my body for 12 hours. The unnerving thing is that it was the first time this procedure was performed in this hospital aa its relatively new. During this procesure I had to lay flat on my back for 19 hours in total without lifting any part of my body but my arms. The procedure itself wasn’t painful but my back started to spasm from not moving. The morphine did nothing for the back pain, unfortunately and I couldn’t sleep much at all. The purpose was to break up the clots to help my body dissolve them more quickly considering their size. I spent 5 days in the hospital…only one day in ICU during the procedure for close monitoring. I’ve been put on 5mg of Eliquis 2x a day for 6 months. The day after being released I still felt tired, but since then I feel normal for the most part. I haven’t been very active while my broken leg heals but nonetheless I don’t feel I have any symptoms. That being said, I feel like I have heightened anxiety about the condition…and have become a slight hypochondriac. Every little thing I experience I assume the worst. Like if my hand falls asleep while I’m sleeping on it, I assume it’s a brain bleed even though I know it’s just because I feel asleep on it. I can’t help but assume the worst. I’m scared for the future knowing this will always be on my mind. My life flashed before my eyes and I think about how lucky I am to be alive, but upset this happened to me. It’s a scary scary thing.
Tara, wishing you healing and a speedy recovery. Although it’s my husband with the condition I have found that the anxiety and worry is a day to day battle for me. He is handling it way better than I am. I find that prayer and meditation help. Having a good support system is good too. Keeping you in prayer.
Thank you for this website. My husband was diagnosed with PE and DVT to his left calf a month ago. He had no symptoms other than swelling and pain in his left calf out of the blue and shortness of breath that lasted not very long (two separate occasions). The origin is still unknown and that’s the frustrating part. I felt so alone until I read these comments. He is on one of the newer anticoagulant meds and is doing better with each day. My anxiety level is through the roof but we have very supportive doctors. Thank you for your stories and starting this blog. Peace & Blessings
Thank you for your post. I’m currently displaying the same symptoms that you describe, such as random chest pains. I was diagnosed with PE 2 weeks ago ,in both my lungs. I feel so anxious and lonely at times. Describing how I feel to family will only confuse and worry them. Glad I found this blog.
Hi there. I’m exactly 2 weeks post hospitalization for a DVT and bilateral PE in both lungs. No one in my family has ever had a blood clot and we have no history of disorders. They suspect it was caused from my hormonal birth control pills. I was on heparin IV in the hospital and then 4 days of Lovenox injections twice daily at home with Coumadin. Now my blood is way too thin and my hemotologists keeps taking my dose down and even checked me for internal bleeding yesterday. He did clear me to fly to Vegas in May. I just want to say thank you for this post. I’ve been experiencing so much anxiety from this whole situation. Every time I’m short of breath I have a panic attack thinking it’s my symptoms again. The doctors in the hospital said it would only be a few weeks but I feel like it’ll take months until I’m fully ok again.
I’m glad I found this thread. I am a 49 year old Male. I recently had a double hernia operation, and was trying to recover. When I started having really bad back spasms. The combination of the 2 kept me mostly in bed for almost 2 weeks. Then, as I was finally starting to recover, I was having extreme shortness of breath, and fatigue. I was diagnosed with P.E. and multiple clots in each lung. A portion of my lung has started dying. And my heart is not pumping hard enough. I’ve been out of the hospital and on Xarelto for a week now. I have been depressed, anxious and scared. My breathing might be a little better, but I have a cough developing now. This is so frustrating. I just want to be able to breathe and function normally again. I don’t know how long this recovery is supposed to take. I would like to wish everyone struggling with PE a full and speedy recovery. Thanks for sharing your stories.
These stories have been helpful for my recovery and experience. I was diagnosed with a massive, unprovoked saddle PE at the end of January. I’m a 28 year old man, I compete in strongman, and was increasing in strength and conditioning when I was diagnosed. Having a PE rocked my world and left my then pregnant wife and I in a lot of fear. After 3 days in the hospital I was sent home on Xarelto. My recovery happened within what felt like 2 weeks. I continued to have some minor symptoms and a persistent cough came back. My doctor did not want to send me to any specialists and I decided to push for that. I have now been referred and they already discovered I was on the wrong dose of blood thinner and increased the time I will be on them. My recommendation to anyone going through this is to be patient with healing but also assertive with having follow up tests done.
Hi, thank you for this blog. I don’t feel so alone any more. This condition is still somewhat of an enigma to me. But I will share my story. I had been feeling a little rundown and experiencing shortness of breath. I thought it was because I am overweight. I was also experiencing post-menopausal bleeding during which I passed a lot of clots vaginally. I scheduled an appointment with my PCP and when she heard my shortness of breath, she immediately called the paramedics. They took me to the hospital ER, gave me a CT and told me that I had blood clots in both of my lungs. I spent the next 9 days in ICU on blood thinners and the docs trying to find the source of the clots. They released me with a prescription for enoxaparin injections 2 times a day. They also did an ultrasound on my legs and did not find any clots. About a week after release, I was admitted to another hospital because of extreme bleeding. I was told that uterine fibroids caused the bleeding. It was determined that the only recourse to stop the bleeding was to do a hysterectomy. It has been 9 months since my diagnosis but I am still taking injections. When I asked how long would it take for the clots to be absorbed, I was told 6 months to a year and that I would probably be on the blood thinners for life. I had a follow CT scan and they didn’t find any edema. I am happy about that. I am just tired of the injections and not feeling too well. Good news is that I have lost weight and A1C numbers are down.
Hi:
My name is Jan. I collapsed on March 26th, 2018 without any warning whatsoever. I was admitted to the hospital with bilateral PE’s a UTI, hct-24; hbg – 7 and multiorgan failure. I was lucky not to be living alone, because I lost consciousness and was in a coma for 7 days in the ICU ward. I was then admitted to a Nursing Home (previously, I was a healthy 64 year old who exercised daily) for another 7 days. After two more hospitalizations for a blood transfusion, and what they thought was a heart attack, I received home health. I still have heart palpitations and chest pain, but a cardiac cath showed my heart arteries weren’t blocked. It’s the extreme fatigue and lack of motivation that drive me crazy. I guess I thought I should feel better by now. I am glad for this site, as it shows me I need to be patient with myself. Thanks for allowing people to post their experience
Hello. My name is Emily clower. I am 26 years old. I was hospitalized with a blood clot in my left leg and lungs. I was given two days of physical therapy and after the hospital learned i didn’t have insurance I was sent home. I had to teach myself how to walk again cause I was in relying on a walker to get around. I was told by the doctor that I’m lucky to be alive and I will have this happen to me again. That has me now very scared. A lot of time has passed since this and even now I’m having extreme pain in both areas. My leg is still swollen and my side’s are in constant pain. I’m not as active as I normally am. It’s harder for me now. I can’t walk for long before it swells and becomes painful. Before this happened i was very active and always walking I even had a good job. Now it’s so difficult to do the job I was doing. I feel so alone in this and constantly afraid of it coming back.
I had a heart cath on May 15. One week later I started having pain in my chest when I took a deep breath. I went to the ER and was told I had blood clots in both lungs! I’m only 35 and it scared me to death! It’s been 3 months now, and I go back next month for my follow up. I spent 5 days in the hospital on blood thinners and was sent home with Eliquis. I still have shortness of breath and I’m scared to death to go for my follow up next month! It has been a very scary ordeal and I thank, God everyday for leaving me here with my wife and 3 kids! I have good days and bad days, but doing pretty well. When I think about it I get very nervous and scared so I try and keep my mind on something else all the time. I know what everyone on here is going through and you are all in my prayers! And please keep me in yours!
I’m Jenny and I am 40 years old and had a pulmonary embolism back in May and stayed in the hospital for 8 days. This came about 3 months after turning 40. Mine came out of the blue, basically, my doctors don’t know why I had a PE. I started passing out one morning and could not stop. I am about 5 months into recovery and have had a few setbacks with medication, finding a balance for everything, etc. I am on Warfarin and have my INR checked regularly. I am actually doing pretty well with levels, but have had problems with potassium levels being low and my blood pressure being low. Have had about 3 ER visits in the past 5 months. I feel like I take a few steps forwards and then several steps back. There are weeks when I feel exhausted and cannot get enough sleep and then there are weeks when I feel pretty good and like I’m doing great. I have a cardiologist and pulmonologist. The doctors told me I would be on blood thinners about 3 to 6 months, but recently I was told because they aren’t sure of where my PE came from I would probably be on them long term.
It’s nice to see other people’s stories and know that I am not alone. It also helps to hear about recovery time and see that it can take awhile and I shouldn’t expect so much from myself. Sometimes normal daily activities just do not happen.
Any support group recommendations or anything would be appreciated. I hope all who are going through this are doing well in their recovery.
Thank you!
Hi, I suffered a DVT in my calf and the multiple PE in both lungs. I have been on Xarelto for 18 months and hope to stop in the next month or so, however my haematologist sent me for a VQ scan which showed some residual clots, so it isn’t clear if they will even fully go away. I think what I appreciated about this article was the impact that a PE has on mental health. I suffer from generalised anxiety disorder (and always have) but this has been substantially impacted by the PE in two ways. One is the risk that you carry by being on anti-coagulants and the other is the fear of a recurring PE once you stop.
In addition a few months ago I had my gallbladder removed due to a large black gallstone. My doctor mentioned that black gallstones are caused by the breaking down of red blood cells and have been linked to breaking down of blood clots. I was wondering if anyone else has had a similar situation after a DVT or PE.
It’s been a week now since I was diagnosed with having a Pulmonary embolism. It was a Thursday night, I was my usual self drinking , smoking and gambling. I was enjoying myself so much i thought nothing could slow me down! Then I woke up Friday morning……. First i felt this sharp pain in my back and then this pulling pain across my chests when I tried to get up! I gasped for breathe! What was wrong with me? It felt like i had the worse fever ever! I staggered over to my bathroom sink in so much pain and I couldn’t believe what happened next. I started coughing and small clots for blood about the size of a finger nail. I was terrified!
This has put my mind at ease, diagnosed with multiple lung clots December 17th, (prothrombin gene mutation) and if I do too much one day am completely exhausted the next day, glad that this is part of recovery and not me being lazy. Thanks for this blog
I had blood clots to legs, lungs 6/2016 after staph infection to back1/2016, 2.5 months in bed.
Ugh. Diagnosed as having factor 5, one gene.
Almost 72, running 52 years, plus working out ect.
Have never recovered speed. My competition from prior to all this , similar age, 70-75
run 5k’s 22-24 minutes. I run 28-31 minutes, ugh!
any ideas? Have I done permanent lung damage, still recovering?
Of course, I am aware we all age differently.
Vic, Fort Lauderdale, Fl.
I had a PE which hit the top upper three lobes in November 28, 2016. I was placed on blood thinners and spent a week in the hospital. I had another PE that hit my left lower lobe and have suffered from tachycardia, shortness of breath, anxiety, depression, fatigue. I had renal failure three weeks after the first PE. I have not been able to work since and suffer memory loss and have since been diagnosed with multiple sclerosis and dementia related to hydrocephalus ex vacuo and lastly seizures. I am not sure what recovery looks like. I am having the hardest time getting my social security approved. The delay with social security has only made the anxiety and depression even worse. Any ideas or advice would be appreciated.
I had a PE (actually 11 small clots in my lungs) almost 3 years ago and only now can say I’m feeling better. At first when my breathing got worse I thought it was due to my COPD and didn’t call emergency until I couldn’t breathe at all. Was in the hospital 9 days, 2 in ICU. The fatigue the first year was horrible. I couldn’t do anything except feed myself. After the first few months I slowly began exercising and could only last 5 minutes on my bike. I finally was able to breathe better, but then came down with pneumonia. My leg, foot and ankle were swollen on and off and now at last there is just a tiny swollen area below my ankle bone. I’m 72 and recovery from anything takes longer but each day is better than the last.
I am 60 days into treatment of my PE in my lung. I also have HHT and have a large AVM that is leaking, and at the same time was diagnosed with extreme anemia. I am now taking Lovenox, I have had 5 iron infusions, and I am waiting to undergo a procedure to fix the AVM. I am on a medical LOA right now. I feel utterly worthless. Sometimes I can do things, and other times. I am worn out. I have a beautiful and amazing wife but no desire. I miss riding my Harley. I am so frustrated. I am gaining weight and have for the past year, I just thought I was depressed until June. I feel like a burden on others because I can’t do what I used to. I make plans to do something and then when the time arrises I have no energy or my breathing is labored and hurts. Sometimes it feels like people think I am lying or exaggerating how I feel. I hate this. I hate this. I hate this. I am so scared this is the rest of my life. I can’t help but wonder is this punishment for the life I used to lead. I am a recovering alcoholic and addict almost 12 years now. I just want to scream. O am supposed to be on church right now but I can’t do it. I am sitting on the trick because I am feeling down physically, spiritually, and emotionally. I am dong the right things more meetings, see a therapist, pray, and try and help others but I feel like I am loosing.
Hi all,
I had multiple blood clots in both lungs back in Feb19. I spent 10 days in hospital and I am now on lifelong blood thinners. At first it was thought I had an asthma flare up but as it got worse instead of better and eventually collapsed at I was taken to another hospital where the clots were diagnosed. I had test after test and fortunately nothing untoward was found and the episode was termed as an unprovoked attack.
I seen my consultant at the end of July and was told everything was looking good but that it could take a year or more to recover. Thankfully I am still around to tell the tale. It’ was good to read that I am not the only out there wondering how long my recovery will take.
Hi there,
You have no idea how happy i am to find this website/blog. There Is non in my country. I had intermediate high risk PE. No 2months in I went to hospital late night because of chest pain/pressure after longer walk outside and they said all is ok. Today(week later)after yesterday walk i feel sh…ty again. I wish someone would just tell me, thats normal to feel like that And to change the way i try to keep fit or just not to breath too much of cold air, i dont know. I used to go to gym 5x a week And now…
HI, is this website still monitored? I had a pe on feb14,2020 and the DR said it was very mild. In fact I was discharged 6 hours after having the diagnosis and have been recovering since then. I have to be on blood thinners for life- probably APS but were still trying to figure that out. I still get tired easily and I get dizzy too. I’ve upped my physical activity lately and now it seems the pleurisy is getting worse. is this normal?
Surgery related PE here, that evolved into an infarction. I almost died. Now, when I exhale, I notice a difference that is hard to describe. It dawned on me that it is likely due to the infarction being dead tissue that is off-gassing when I exhale. The psychological impact of that is a bit disheartening. I used to be strong. I delivered 107-pound crates of fish, more than 140 at a time. Now, I can’t even walk up a flight of stairs without trembling. I’m so tired. I don’t really express to people I know how rough it is has been. Realizing that I will never have my endurance back is the worst part. Yeah. Just really tired.
Thank you, Sara. You feel like you are going mad without having your experience corroborated elsewhere and your blog and its community is about the only place I’ve found. I hope you realise the value of what you have done.
I had a DVT and double PE in in February 2019, caused by colon cancer that was eventually found by colonoscopy. I had surgery in April 2019 — it was found to be stage 2 and related to a gene fault PMS2 Lynch — and I was also found to have T2 diabetes.
Fatigue has been the main thing on the road back. I started off being able to do very little, and it has built up slowly but I’ve done a lot of sleeping.
A year and a half on and I am still gradually improving but I am yet to get back to work. Initially I was taken off blood thinners after six months but a later scan showed up further clots on both lungs so now I am on them for life.
My current focus is the diabetes and trying to reverse that. I’m not really overweight and eat a good diet (veggie since aged 10) but I’m trying to get back to what I weighed in my early 20s (I’m 48) and will see if that works. I’m back running a few times a week as well.
At times it all feels a bit overwhelming. This site helps a lot. Thanks again.
I developed a blood clot (DVT) in my left leg October, 1999, Was told i would be on Warfrin 3-6 months. Then Doctors asked about my family history. Told them my Grandfather ded rom a blood clot when he was 80yrs old. Doctors immediatley told me i would be on Warfrin for life. Then said i would need to take Bisophrol and also Digoxin. Now after taking Warfrin for 21 years the nurses at my clinic are trying to get me to take an alternative to Warfrin. They say my percentages have dropped to 30% should be up around 65% what ever that means. I feerl they are trying to scare me a little as keep telling me that staying on Warfrin could cause a clot on the brain or even bleeding in stomach. I am 76yrs old and been on the warfrin for 21 years so what should i do. I recently had Gall Stones removed and surgeons say stay on Warfrin till my body settles down from this procedure, but clinic still keep talking to me and asking if i have decided and when i will stop Warfrin and take alternative. I sometimes think they are just trying to cut costs as i would not need to use Clinic anymore or nurses.
So I shouldn’t feel like a wuss that I wasn’t able to make it through a day of work today on a Thursday when I was at the ER for PE on Monday? I was really feeling like I should just be fine and carry on. But I’m just So. Damn. Tired. And still a bit short of breath. The only thing a doc told me was to do things “as tolerated.” That’s so vague! I have a f/u with my PCP in an hour, maybe I’ll get better guidance there.
Thank you for all those who have posted information on the site. I just found this today. I was just diagnosed with a saddle embolus on the left lung, with prominent clot
extending into left upper and lower lobe pulmonary artery branches.Thrombus also is extensive in the right lower lobe. It happened suddenly. There is no cause at this time except that I have been wearing a mask while teaching all year. Has anybody had experience with mask wearing causing shortness of breath/PE? I am completely exhausted and I am having trouble meeting daily life expectations.