How Long Does it Take to Recover from a PE?

how long does it take to recovery from a PE cover

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)
  1. Gender (men have a higher risk for recurrence than women)
  2. Presence of a strong clotting disorder
  3. Obesity
  4. Significant chronic leg swelling (post thrombotic syndrome)
  5. Positive D-dimer blood test obtained while on blood thinners
  6. Positive D-dimer blood test obtained 4 weeks after having come off blood thinners
  7. A lot of left-over (residual) clot on follow-up Doppler ultrasound examination of the leg.
  8. Strong family history of unprovoked DVT or PE.
  9. 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,

0-BLOG SIGNATURE SARA

Comments

  1. 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.

          • Thea Harris says:

            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.

        • 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.

  2. 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!

  3. 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!

  4. 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.

  5. 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 :)

  6. 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.

  7. 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!

  8. Stephanie Rose says:

    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…

    • Stephanie Rose says:

      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!

  9. Stephanie Rose says:

    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

      • Stephanie Rose says:

        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.

    • I hope your appointment went well and you can find some answers!

  10. 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

  11. Nicola B says:

    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!

  12. Stephanie Rose says:

    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.

    • Stephanie Rose says:

      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!

      • Stephanie Rose says:

        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.

  13. Rhonda Minks says:

    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!

  14. 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.

  15. 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.

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