Hi there!

Although I can't comment on the first part I can certainly agree about the second. I only had a one night stay in the hospital and got at least three different opinions about when I should start feeling better, or working out.

Since then I've emailed back and forth with my primary care about various symptoms I've experienced in recovery and have to say doing research on my own was way more helpful.


Hang in there!

BHansen, being bed ridden for a month is a long time. It would take time for your body to bounce back just from the bed rest, let alone the clot. Maybe you just lost more conditioning that's you though and you've been over doing.

It's true once you're out of the hospital, it's hard know what you're supposed to do. The advice I got was to start exercising very, very slowly when I got home and gradually work up. Now that I am so far out from my PE (years) I see that really, there is no secret to recovery. It just takes time and patience.

I definitely had periods during recovery where symptoms returned for a while. It was generally after I had been pushing things too hard... and my body pushed back. I was in worse shape about five weeks after diagnosis than I was when diagnosed and it was just because I had been pushing myself too hard.

I had "bouts" of increased/returning symptoms for about 11 months after recovery. They'd usually come on after increased activity, being out in hot/cold/humid weather, being exposed to strong fumes, etc. Anything could stress out my lungs (it seemed like) and it often took a while to bounce back from it.

If you don't see any recent changes that could be causing the fatigue, it might be worth checking in with your doctor about the fatigue... but if resting seems to help, I'd give it more time. We all go backward and forward during recovery. Sometimes more backward, sometimes more forward.

Its crazy how one day I feel great and can workout hard or ride for 20 miles but then there are days I can hardly get out of bed I'm so tired. On humid days I don't even bother trying to do anything.

"On a side note, anyone else have the feeling that when your PE was discovered it was life or death, but after discharge you are pretty much on your own to figure it out?"

Completely. SO frustrating.

Yes. It does feel that. I do think it's because doctors in the hospital don't have much experience with PE patients once they're out of the hospital. They don't maybe know the physical, mental and emotion struggle. And their job really, is to make sure you're stable so you can leave the hospital and that there is no real trick to recovery except time and patience.

Why were you bed ridden for a month after diagnosis? Did you doctors prescribe bed rest?

Bhansen, I was just like you (i did the Diablo Grande Tough Mudder-MUDDER BROTHER! :-) ). In my case I had massive PE's and DVTs. I now have resultant secondary PAH. it's been over a year and they still think I'll get better but it's been a VERY VERY slow recovery. Just be patient.

I was bed ridden because of extreme fatigue and pneumonia. My PE went undiagnosed for 10 days. Originally thought it was a pulled chest muscle from working out.

The physical part of recovery may be the easiest part. The mental and emotional is way more difficult. Patience is not a virtue of mine and in my mind if I feel better than I should be better, but that doesn't work with this recovery. (or so I'm figuring out). I originally thought I was tired because I was out of shape so I just had to push harder. That is not the to go. Haha

I was diagnosed may 22 with bilateral PEs and an infarct in the right lung. Also had delayed diagnosis due to being fit and relatively asymptomatic ( although I felt I was highly symptomatic - and in pain). Three months on I feel like I am shocked at how long it is taking to get back to running/ I am super slow and need to rest lots! Yet I seem normal in daily activities. I was beating myself up that maybe I am not trying hard enough- a relief to see this forum and see these experiences and feelings are normal. Reminds me to be kind to myself!

Yes, you have to be patient with yourself and your recovery. I, too, worked out with weights and was in the gym almost every day. I got so depressed because at 5 months out I was still being knocked out with no energy if I pushed too hard. Your body has its own timetable, I've learned. I am now 6 months out and am seeing huge improvements and am feeling more and more normal- but not there yet! It will get better.

I was/am the same way. Just figured I was tired because I was out of shape. I got Dr clearance to start working out 6 weeks after the PE. I was tired so I figured I'll just go harder and get back in shape faster. BIG MISTAKE. That knocked me out of whack for a week. I was like you jcbpiano I got depressed because I was in the best shape of my life and now was struggling to find the energy to get out of bed. It's coming back now 5 months later but I still have a long way to go to get back to where I was

That sounds like what happened to me. I'm not a weightlifter, but I was pretty fit when I got PE's in both lungs. A few months later, I felt normal in the morning and could walk a few miles even, but by 4pm I'd be totally done for the day and could barely get off the couch. I remember I felt like I was never going to get better.

My guess is that getting over PEs is like living with constant, low-level oxygen deprivation.

But if you are 5 months out, the worst is behind you, right? I hope you feel better soon.

The set backs are really tough. It feels like one step forward and two back. My husband was noticing I was more myself three months on. Unfortunately ran a bit too long and this week feel like I have been hit by a truck- aching arm and upper back , weird heart fluttering and exhaustion. My poor family - sets us all back :-(