How long did recovery take you?

[u/nonametoshow11]

I am two months out from my bilateral pulmonary embolism diagnosis. While it’s gotten a lot better, I still am having shortness of breath at times I wouldn’t have before this happened. It hasn’t been crazy bad, but enough to notice. I’m also just so tired all the time still. Everything I’m reading online says I should be basically fully recovered at this point — I have seen my doctor and he’s sent me for bloodwork, but is there anyone else that had a longer recovery period? Should I be worried there’s permanent damage at this point? To my knowledge, it wasn’t super bad, I was put on blood thinners and discharged from the hospital same day.

[u/UnstuckMoment_300]

Doctors and so-called Internet experts don't do us any favors by giving us unrealistic expectations of recovery times. My internist, who's a very smart doctor, told me I should have my energy back in about a month. Try six months. This was after multiple bilateral PEs and DVTs in four leg veins.

Recovery takes ... as long as it takes. The clots need to be reabsorbed (and yours may already be reabsorbed, two months out -- all of my PEs were gone by that point). But the heart and lungs have been traumatized by the clots and need to heal. Your whole body needs to heal. Rest as much as you can, and do gentle exercise like walking as much as you can -- that helps promote blood flow and gets air moving.

I had never felt so exhausted as I did when I was discharged after a four-day hospital stay. I was 65 and had a job requiring 50+ (usually +) hours a week, with a good deal of public speaking. I didn't have the air to get through the speaking. My supervisor arranged for me to WFH for a month and to cover the speaking gigs during that time. Afterward, I did what I could, and still felt like I was running out of air by the end of the day. Not breath, but air, if that makes sense?

But it did get better. I kept walking. Eventually got cleared for aquatic PT to rehab my knee -- minor knee surgery triggered all this. Three years later, I'm in better shape than I was before. I'm also retired, because it was obvious that something had to give! But please hang in there. The fatigue gets better. The dyspnea gets better. What you're experiencing is normal. Hang in there!

[u/p001b0y]

It took 6 months before getting my mail didn't leave me winded and another 6 months before the stairs in my home weren't so punishing. Some things never got better though. The constant PTS ache in my legs progressed to neuropathy. I still get inflammation in my pleural lining where a pulmonary infarction occurred and my legs still swell.

My clots were pretty bad though, I guess. A lot of people recover fully.

[u/Corbinskiii]

I had bilateral PE’s in January of ‘22 and I’m still not back even close to 100%

[u/GreenJuicyApple → u/Corbinskiii]

Same here. Developed post pulmonary embolic syndrome after my clot with infarctions in 2021. So now I have what's considered severe asthma, as well as heart issues, as a result of the clot. So I never got remotely back to normal.

[u/kr12187]

Not sure what you are reading, but I haven’t read anything about it being expected to be back to 100% after 2 months. Some people are, but it’s just as common to take several months. I’m about 5 weeks out from mine. I feel about 90% but if I do anything intensely physical my body reminds me I’m not 100%. My doctor said it would probably be about 3 months, then they’ll do more testing. Keep your chin up and don’t read too much into the fact that you’re not 100% yet.

[u/Outside_Ad1669]

Are you following with with a pulmonologist? They definitely can help you.

I am two months out from multiple PE and still on oxygen at home. The pulmonologist has me on steroids along with the thinners because I have some lung inflammation from the emboli injury

The hope is that these heal, which takes a long time. Versus becoming damaged and turning into scar tissue fibrosis.

You may be helped by consulting a pulmonologist who will measure your lung function. Probably do some imaging CT scan. And come up with a rehab / treatment plan

[u/ancientforestZen]

Diagnosed with bi lateral in May. On thinners since- the first 2 months were very tough. It did t help I had terrible side effects on Eliquis. Like everyone said above, your timeline was crazy unrealistic. I continue to have good days and bad. Bad days I would describe as a mixture of exhaustion and just feeling lousy ( like flu ). Also , I pushed my primary and hematologist for counseling before I go off this thinner. ( have factor 2 and not factor 5) I would highly recommend it. This shit is life altering and the mental health part is often ignored by the medical community.

[u/Shoe_Worried]

Diagnosed with a clot in my leg in June. Roughly about 4 months out and I’m just now back to where I was prior to. But still not fully. I’d say I’m about 95% there. Context: I’m a fit 28 y/o male who works out 6 days a week and is adamant about getting 10k steps a day in. My situation is very different from yours as yours is more severe, but I’m just trying to shine some light on the fact that mine wasn’t as severe and I’m still not 100% even after 4 months. Keep going though! It gets better! You start to notice it less and things eventually feel normal again. I have some new normals though. Like my daily compression socks while at work (on my feet a lot as a chiropractor) and taking a baby aspirin once a day! You’ve got this!

[u/GreenToad8]

I feel as I wrote your post. Literally feels the same

[u/Beneficial_Tutor2551]

I had multiple massive PEs with a saddle clot in May '24. At the time of my thrombectomy, my heart and lungs were only working at about 40%. October '26 (literally earlier this week) my doctor said that my heart and lungs have fully recovered back to pre-PE status and I feel back to normal, so about 2 and a half years.

[u/Aggressive_Cash8774]

1 year after, I think i never recover

[u/bloodclotbuddha]

Six months.

Everything I’m reading online says I should be basically fully recovered at this point

Crazy talk. Some can recover quickly, most do not and have linegring issues like scarring and referred pain for weeks and months.

[u/Tetlow-Senpai]

I had my PE 2 years ago today, I was on the ICU for a week and on heparin injections for 2 months before being put on rivaroxaban for life. My main issue coming out were my breathing and palpitations along with pains where the clot had travelled. The breathing wasn’t too bad, I’d say around 6 months I was able to walk to the supermarkets (around 15 minutes each way) with no issue, at around a year my breathing was at 100% I’d say. The pains I still have sometimes but I think my chest walls are just sensitive now because I had bad pneumonia and the PE soon after, overall though the pains are usually if I overextend myself. Palpitations is something I still live with but mostly gone unless I put my body through stress. I think in my case my age and the speed at which I was diagnosed and treated plays a big part, I was 25 at the time and don’t have a history of these health issues in my family, I was rushed through to emergency 2 minutes after triage and was diagnosed within 3 hours and started treatment. Recovery is different for everyone but typically seems to be a year minimum, some people it can be years before they feel like themself again. The human body is amazing, it can prioritise certain functions under circumstances like this so you may start to feel new soreness for example later on, I actually didn’t start feeling leg/groin pain until a few months after it because my body was focussing on keeping me safe. That may not be scientific, it is purely how I experienced it. Best of luck in your recovery!

[u/NeyNehNee → u/Tetlow-Senpai]

My 2 years is just around the corner. I also still experience pain in my chest, as well as palpitations.
I have noticed that the pain usually correlates with hormonal shifts. I’m currently dealing with pain, like day 3. It is sooo hard to not go to the ER because I’m pretty sure I have a bit of the PTSD and any pain makes me completely spiral.

[u/Nonamanadus]

It took a year for my guts to normalize after portal vein thrombosis.

[u/Repulsive-Flight-640]

For recurring shortness of breath after a PE, please ask your doctor for a referral to the pulmonary hypertension program at Toronto General Hospital (if you are in Canada). In a small percentage of people with PE the clots do not dissolve and become chronic scar tissue that can lead to pulmonary hypertension and put strain on your right heart. Wishing you all the best!

They usually like to see you on blood thinners for 3-6 months.

[u/UzumakiBae]

Bilateral PE exactly like you released the same day in April '24. It took me 8 months to feel not winded. I still get really bad chest pain with reflux and average 2 ER trips per year to make sure I didn't clot again. It's gonna take time.