Heck Yeah.

My clots were busted with clot busting medication while in the ICU when I was diagnosed and I still felt like hell for about 2- 3 months post diagnosis with what felt like on going shortness of breath and intermittent chest and back pain.

I attribute that to both healing and just starting to do more activities which was hard at times because my lungs and body were so out of shape from recovery .

Also, if you have allergies or anything like that, I think that's just hard to deal with sometimes after diagnosis. Sheesh my PEs were over 7 years ago and I'll tell you, if I didn't know any better or didn't have my wits about me, I'd swear I was having a PE right now but in reality, my allergies are bananas right now and I know that's causing my breathing issues.

Congrats on not having clots. That's great news. Hopefully there's no hypertension issue.

Absolutely! I felt much worse at five weeks out than I did when diagnosed. Complained to my doctor, got a repeat CT, and my clots were completely gone also. But, I still felt like crap.

My doc (gently) slapped me on the wrist, told me to dial it back, cut my work hours, and sent me home. I'd basically just been pushing myself too hard to get back to normal and I'd overdone it. I took it a little bit easier on myself and took another full months to try to get myself back to "normal" (like a full work schedule).

The thing you have to remember is that the clots leave a TON of damage behind them. You have tissue that was either starved of blood/oxygen or flooded with it. Your respiratory system and circulatory system have bother been heavily compromised and working under trying conditions. Even if the clots disappeared five minutes after you were diagnosed, that damage takes a while to heal. My cardiologist compared it to getting cut with a knife... most of the healing happens after the knife is gone.

I had a ton of tests run at about five weeks out, just because I was feeling worse than at diagnosis. Spent several days at National Jewish (one of the best respiratory hospitals in the country) getting tested ... and they found nothing. I really WAS just pushing myself too hard.

I still had bouts of exhaustion, SOB, and pain up until about 11 months out, even though my clots were gone at five weeks. These mostly showed up when I was overexerting myself or--like RMB mentioned--when allergies, colds, or cleaning fumes had affected my lungs.

Hang in there! I'll keep my fingers crossed that they don't find any hypertension issues.

Im almost 4 months out and i still have the chest pain, sob, and very tired all the time. it seems to be worst after then before i knew what was going on in my lungs.

Also anxiety is at an all time high after dx. So i took rmb advise and i now am seeing an therapist which should help alot im hoping.

Great to hear that your clots are gone good for you love. But i have been to the er about 15 times un two months after my Dx for thinking something was wrong again but it was not i was fine well i had someother things going on but not the clot.

Best wishes to you and again good to hear youre clot free.

Thanks guys. They're going to do a treadmill stress test first and then take it from there. The doc said he doesn't see any signs of hypertension based on the echo and my CT scan showed that my right ventrical was fully back to normal. (Originally it showed mild strain). But if I'm still feeling S.O.B at the 6 month mark, he's going to do a right heart cath test.

Tomorrow is my first day going back to work since it happened. I've been off work for 3.5 months and I'm super anxious. I just constantly feel like I'm breathing through a straw. Hoping I will be okay to work.

Another question - is it possible for CT scans to be wrong? They're pretty accurate I thought, but the Hypertension Specialist said it's possible that I still have some small clots. Which has me scratching my head since the CT said my clots had resolved. *sigh* This is such a confusing and stressful situation as I'm sure you can all relate to.

Being honest, so far you haven't described anything I would find abnormal for your period in recovery. So the main thing I would suggest is just to not get ahead of yourself in assuming that something more must or might be wrong, just because you have some lingering symptoms.

My PE's were gone before I ever got out of the hospital because I too had clot busting medications, which were injected directly into the clots via catheter, yet I was in excruciating pain for more than a month after. The toll on my body overall was extremely difficult and it took me a really long time to get back any level of energy at all. I got used to having pretty constant pain in certain parts of my lungs, and the pain would sometimes get better, then sometimes get worse, and yes I had an occasional trip to the ER to check things out. But the good thing in having gone and been checked again is this: you now know that whatever that sensation was which took you to the hospital again is part of your "normal" recovery. So when you feel that again, then you shouldn't need to rush to make another trip to the ER, because you know you had that pain and were still okay.

While you'll likely disagree with what I'm about to say, I think that really your doctors or whoever said your clots might be chronic, did you a real disservice to recovery. You might feel that you are glad they were "straightforward" with you, but the reason I think that's a disservice is because there is a real emotional aspect to recovery. I personally think that when we're kind of set up emotionally for something to be a long-term or permanent problem, we tend to look for things to make it be that. So when someone might feel pain similar to what you've experienced, go the to ER to be checked out, and get the same results that nothing new is wrong and in fact there's improvement over the last scans, a person who has no expectation of a permanent problem will brush it off and think, 'Thank goodness, this pain is nothing more than normal healing pains, and I am on my way to recovery,' but someone who has been set up for ongoing problems will think, 'Oh no, so it wasn't new clots, I must have something worse still.' The expectations are different, so the reaction is different. That's why I think it's a type of disservice for doctors to speculate about something they really don't know. Obviously, whoever thought your clots were chronic was wrong because they've cleared up. CT scans are very reliable, so if you had still had the same clots as you had originally, they would be visible. CT scans are so reliable that they can even detect clots which are small enough to not pose any real threat to a patient. Now, I'm not disagreeing with your hypertension specialist, because there is such a thing as microclots which can't be picked up on a CT. But the point of things for you is that the clots you had are gone, it's not as if the CT would have missed them. Your heart strain was only ever described as mild in any case, but that has apparently resolved as well. You're getting good news, your body is improving, so try to focus on that.

Still, as has been mentioned before, just because our bodies are healing it doesn't mean we immediately feel better either. PE is a trauma to the most important systems in our body, and our whole body suffers from it for awhile. The clots can be gone, but it takes time for everything to get back to normal again. I don't think it's unusual for someone to still be getting tired more easily or still be getting pain from a significant PE even more than a year after. Some things might not ever be quite the same as before, like a lot of us seem to have extra sensitivity with breathing during allergy season or high humidity, like rmb said earlier. And that's in normal recovery. That becomes even more obvious as we make physical progress in the months following diagnosis and start getting back to our regular life again. As you take steps forward, like going back to work, you're going to notice how tired you still feel, or you may get an increase in chest pain. Well, that's not because something new is wrong, or because there's another sinister problem lurking, it's just because you're taking your body out of it's relative comfort zone and expecting more of it. It takes time to build our strength and stamina up again. Unfortunately, we kind of need to expect some level of ups and downs for what feels like an eternity. Eventually things will even out and we start thinking less about everything physical in the context of having had PE.

Also, because you've mentioned the issue of SOB, try to think if anything else might be causing that symptom, because honestly there is a whole bunch of stuff that can cause that, including anxiety and anemia. Even if you're not anemic but your iron is lower than ideal, it can cause SOB, which I know from experience. My hematologist told me that menstruating women on anticoagulants need to be especially careful of that because most end up with low iron; so you might want to check with your doctor and see whether an iron supplement might be helpful to you. I can't remember for certain, but I think low vitamin D might also cause some SOB, and if you've been indoors a lot during recovery, that could be a real reason for some physical symptoms. I mention this only because I think it's worth trying to make sure you've covered those bases before getting a heart cath, and you should have time to try those things first. I think that sometimes doctors, and especially surgeons, overlook some of the simpler explanations for symptoms we have.

Hang in there, it sounds as though things really are heading in the right direction, even though it still takes patience and persistence as you get back to your normal life. Congratulations that the scan showed that you're physically improving, that's great!

I agree. I think any gold start test for diagnosis could, on rare occasions, miss something but really, those are the exceptions not the rule. What you describe sounds fairly normal for recovery at this point.

One thing to prepare yourself for is that if you've been off work for this long, and are just going back today, you're going to likely feel exhausted from that and if you're anxious about it, it's going to amplify everything, the shortness of breath, feeling tired, etc. Just know that's normal. That's normal even if you go back after a few weeks after diagnosis. If you've not been as active as you were since your diagnosis, that could be part of the issue. Your body can so easily lose conditioning that it takes so much effort to just walk and do normal things.

You know how I finally started feeling healthy and well? I quit going to every specialist recommended to me. Not saying to do that but I found myself in this spiral of dr appointments and tests and I honestly think it had me convinced there was something wrong with me and actually made me physically feel worse. Not saying don't have tests and don't see doctors because sometimes there is something wrong and things need to be ruled out. I had lingering heart issues for a while and I'm glad I was being monitored that first year, until each visit just concurred with the last which was that my heart was now normal. So that's when I said, enough. I think after a while, when all the tests don't reveal any clinical issue, we have to just step away and rethink things.

Hey guys,

Thanks again for all your support as usual. You guys are the best. Just to update you - I had my appointment with the Hematologist and they can't really say what is going on with me. They wanted to order a Lung Scan, and I asked why since the CT scan already said my clots were gone. The doctor said that CT sometimes only pick up acute clots, but the radiologist reading the results isn't always looking for chronic clots. And that the Lung Scan would be more likely to show chronic clots. I am so confused! I don't understand how all that is possible.

So, I have my echo stress test tomorrow to check from Pulmonary Hypertenstion. If there is any indication, they will send me for a right heart cath. I asked if they'd at least hold off on the lung scan till I got these results. Cuz really, I've already had 3 chest CTs, so I don't want to keep getting radiation unless it's absolutely necessary. (Especially when it makes no sense to me that I would even need that test).

I tried to go work last week. But as I was just sitting at my desk, my heart was racing and I felt short of breath. Needless to say, it was impossible for me to concentrate because I was so uncomfortable. My boss eventually sent me home and I'm off again until the doc gives me the all clear.

Does anyone else feel like some of these doctors are just grasping at straws? I mean, could it just be possible that my recovery is a bit longer and my heart is just repairing itself still? *sigh*

Ally