I too was recently diagnosed and was told that so long as I am on medication, the PE won't get bigger and it will dissolve over time, much like a bruise. I wasn't given a time frame either. From what I've read from other posts, people can have pain for a long time (years) and others it seems to go away in a few months. May I ask what it means when you develop blood in your stool and urine? Was it because of the blood thinners? Also, do you happen to know if you had an infarction of your lung with your PE? Perhaps that could also be a reason for extended pain, I don't know though, I'm only guessing. I ended up with an infarction and am a little scared as to what that means in the long run.

Hang in there and I will be praying for your pain to go away quickly.

Well, as you are already seeing, this is a very frustrating situation. I'm ten months recovering and I find I'm still getting frustrated. The truth is I think half the time the doctors can only guess at best how things are going to be for us. I'll do my best to give you answers according to my experience, but that's all this is, because every doctor seems to have a different opinion, and every person a different experience...

I think most people will eventually be clot-free in their lungs. The clots will get reabsorbed into the body. My clots were actually gone within the month because of thrombolytic therapy, however, I still have pain this late in the game. Some people only have pain for a few weeks. I think we could generalize it some and say that obviously people with more extensive clotting and more extensive damage, like infarction, will deal with pain for longer, but again, everyone's different, so it's not to say that even if you had a "minor" PE you won't experience some pain longer term.

I will admit that for most of this time I've felt that the doctors left me totally in the dark as to recovery, and it seems that's a pretty common experience. Again, I think they don't like to say much because they simply don't know. My doctor guessed I would stop having pain after a couple more weeks 8 months ago. As I said, that has not been my case, although the pain is far less severe than it was in the beginning. In my case one lung collapsed plus I had infarction, so I attribute much of my pain to the severe condition I had been in.

Really, in the course of recovery, you're still in the early stages, so I'm not really surprised to see you have pain and breathlessness. These things should continue to improve over time for you. The lungs are nearly miraculous in their ability to get better from even severe trauma, so that's some good news for you. This might sound silly, but one thing in the early stages that I think really helped my lungs was that I have two small children and I sang all the time with them. Well, as much as I could manage. It was very, very hard for me to do in the beginning, but I kept up, because of course my kids wanted it. I actually think it was excellent exercise for them and helped me a lot, but that's just my opinion.

The one thing no one in the medical field prepared me for was how long a road recovery would be. There are a lot of ups and downs, so try to brace yourself for that. Try to stay positive and make physical goals for yourself. That was something else I felt like helped me both physically and emotionally.

I hope you begin to feel better soon......
Sarah

Oh I also wanted to ask, was the blood in your urine and stool because of your INR being too high? Because that's the one thing I would say is not normal, even with the warfarin treatment. It can certainly happen, but it's usually a trigger to know that your coumadin dose needs to be lowered. What have your doctors said about that? If your INR hasn't been too high, then are they checking into why you're bleeding?

For some odd reason I had a little blood in my stool and urine when I was on the thinners, even though my INR was never too high. My doctor just checked me out each time once I was anemic and he put me on iron. Other than that they just watched it VERY closely.

There isn't a "standard" time for when it goes away some people get a repeat scan after 3 months and its gone for me it took over 6 months for it to fully dissolve. I was told by a cardiologist that some peoples never dissolve but that over time it attaches itself to the vessel (or whatever hopefully you know what I mean even with out the correct word there lol) and wont get detached.

I did have infarction and i still have some pain (some of which I have recently discovered is asthma). Good luck. the only thing I can say is seek answers until you feel better!! I am almost 2 years out and I didnt really feel any better until about a year out. Not to be discouraging... everyone is different I happen to be a very very slow recover from everything I have had.

I had a bit more bruising and bleeding while bridging on both the lovenox and warfarin, with things getting a bit more normal on warfarin alone.

PE is a blindsiding diagnosis and one gets converged upon by many people in white coats. There is a lot to know, a lot of variability in the details, and therefore a lot of confusion.

Everyone's pain experience is different. Some get it as PE forms, some get it in the recovery, some in both. Some bear it out a few days; others weeks, months, or years later.

Just how much the PE resolves, and how long it will take, is highly variable. When I first (and quite belatedly) saw a hematologist he suggested 10 months, but it turned out I like many others have chronic PE, in which old clot material becomes fibrinous scar.

The higher priority now is to get the INR stable and, otherwise, to integrate the pros advice as well as possible.

Thank you all....your advice, info is so valuable!! I feel validated...blood in stool and urine are coincidental as that is what dr's are saying....I did have a filter put in and my pulmo dr says it can come out at the end of this week because the PE is no longer...he actually said that it was small and there is no way to know if it is completely gone but no longer shows on repeat ct scan...so filter can come out...which scares me...will it come out through neck??
Many thanks though for all your input, I feel "normal" with my fears, feelings being in this support group.

r6leslie, Welcome to our group. I agree with all of the above comments plus I wanted to reiterate the fact that a lot of health care professionals simply don't know-so they guess or dance around the questions. I would say the pulmonologist should know the most-and he knew more about the proper management at the beginning, but blew me off when I continued to have chest pain and SOB months into the experience. I finally switched PCP and found alternative treatment options on my own to help me breath easier. You are too early in the game for that. I am a nurse and was very let down by the medical community. I have to saythough, that especially as a pediatric nurse, I knew absolutely nothing about this before it happened to me. Now you can't shut me off. I hope you start getting some relief-remember that heat helps the pain too, and continue to let us know how you are doing or if you have further questions. Blessings, Teri