Hi, well I didn't realize I had an infarction until recently, when I found my medical records on line with my current provider. I had copies of some medical records when I was first diagnosed but really didn't look at them that carefully because, for me, I just didn't really feel the need to review them with a fine tooth comb. But after seeing them on line, it caught my eye that I was diagnosed with an infarction.

With that said, I am fine. I mean, my clots were really large, both lungs, my heart damaged resolved and I feel good. I'm 7 and a 1/2 years out from my PE. I actually felt fairly good about 6 months after my PE diagnosis, and within a year I would say I was good to go, although cold weather STILL bothers my lungs. That has improved markedly over the years but for me, that was one of things that really stood out to me the most, that feeling of being punched in the back and chest walking into cold. That, and heat bothered me for a bit too but that is not the case any longer.

Anyway, I'm on warfarin long term since I''ve had two clotting events (two separate DVTs) so I can't say if being put back on anticoagulants will help. It may make it easier to get blood to flow but I don't know. This is something the recommending doc will want to explain whether that is really going to do anything for you.

I would also just make sure you don't have asthma related shortness of breath. Some people here have been diagnosed with asthma post PE. What the specific connection is, I don't know, but something to rule out too.

I'm sorry for what you've already been through and are currently going through. It goes without saying that I hope you'll get good results from the testing and maybe things will be better than they might be looking right now.

There's a couple of things you mention that I can relate to somewhat, so I'll share some of my experience with you. One thing that I'm very happy for you, though, that I didn't have is that your doctors are looking at this stuff now and not simply acting like they don't know why you feel as you do and basically hope that by ignoring it, everything will return to normal on its own. It's better to check this all out now, and then you know whether there's any additional problem and how to deal with it. I was basically left floundering for four years before getting things properly cared for.

Anyway, I did have infarction also, it sounds pretty similar to what you describe except mine is the other lung. Like rmb said, there seem to be a good amount of people who come through this group that had at least some infarction diagnosed with their PE, but most everyone seems to return to a relatively normal state afterward. I mean, most of us (I'm six-plus years since diagnosis, by the way) still have some pain or feeling of SOB with extreme weather, or sometimes exposure to certain chemicals in the air, like cleaning sprays. They've been doing controlled burns in my area this week, and that always makes me experience tightness and pain.

From the symptoms you describe and for your point in recovery, it's hard to say whether that's just normal recovery and you can expect that to get better or whether there's something else going on, which is why your doctors are looking into it further. This is the right timing for them to check, because you are experiencing some difficulty, and that might just be because of the infarction it's taking you a little longer than normal to heal. But they're checking to make sure there's isn't something more happening, and six months seems to be about where they expect healing and progress to level off.

I had difficulty exercising, similar to what you describe, and it wasn't just because I needed to build my strength up again. I always had certain difficulty while doing it, like my pulse was too high, I couldn't catch my breath and would get lightheaded to the point of passing out sometimes. While I talked to my doctor about it, I really don't think he knew enough about PE recovery to do a good job helping. While he did check me for asthma (for which I was negative) after the myriad of inhalers he kept giving me didn't help, he basically said, well, this is just the life I was left with, I was lucky to have survived and would just have to learn to adjust my life and cope because he couldn't do anything to help.

Eventually I moved and got new doctors, finally have been seeing a cardiologist for the past two-plus years and in this time have found out I have chronic pulmonary hypertension. Now, please remember this is a minority of people who get that as a result of PE, so I'm not trying to guess or suggest that you have the same. A lot of patients have some pulmonary hypertension in the early stages of their recovery, but it usually resolves on its own. But your doctors have put it on the table as a concern, and from my perspective that's a good thing because they're looking into everything rather than leaving you on your own. It can be hard to do, but try not to assume that you've got problems they investigate. I've been through that myself, and often there's so much anxiety about the possibility of a problem when often you end up not having it anyway. So I'd recommend that you do your best to put it out of your mind until you have the results of the testing. I'd also recommend NOT reading previous discussions here about pulmonary hypertension because they're filled with a lot of inaccuracies by people who were either newly diagnosed (and with a laundry list of other health problems) or jumping to the conclusion they had it and were reading all the worst-case scenario stuff they could find online.

It's a big if, but IF they do find you have additional damage beyond normal recovery, diagnosis of it, especially so early in your recovery is a very good thing. My life has improved beyond what I can even describe since diagnosis and getting treatment which opens up my blood vessels and allows my heart to not work so hard and the blood to flow more freely. I have a much better life now than I did while not knowing.

Oh, and you asked about continued use of blood thinners. I understand your doctor considering that, especially depending on what they find from the echo. I am permanently on blood thinners, and that's just because I've had four separated instances of clotting. BUT, this is a strange thing which I noticed but never understood - I did go off warfarin twice, and I realized at some point that when I was on it, I had less frequent and severe chest pain than when I didn't take it. I mentioned this once to my cardiologist and he responded that it didn't surprise him because he believes my heart was throwing tiny clots when I wasn't taking warfarin. There's no way to know that for certain, but I do know is that it was something I noticed way before he suggested that as a possibility, and even though I could never think of a reason why it would be true.

Well, hopefully your echo will be good news, let us know how that comes out for you and if you have a helpful appointment with the pulmonologist.

Excellent, sensible advice!

Thanks for the kind answers rmb and ShilosMommy.

The echocardiography showed no signs of pulmonary hypertension lucklily. This was very good news to me!

I will be seeing a lung doctor next Thursday to see if there is anything I can do to relieve the pain in my lung, since it affects me all day.

I don't have asthma, I suffer from chronic sinusitis but my shortness of breath clearly comes from my lungs, mainly when I am too tired (i.e. after a long day at work).

We'll see what this lung doctor thinks.

Thank you so much for your support!

Excellent news!

I'm so happy to hear you got a good report from the echo, what a relief!

If everything else looks good, probably the pulmonologist won't recommend returning to warfarin. Unfortunately it can take a pretty long time for pain after a PE to diminish. Do you ever try just taking Tylenol and see if it at least takes some of the edge off the pain? If you don't, you might want to try it, because likely the doctor will ask that first, and if you try it then at least you'll already know to what extent it helps.

Some other things I have found helpful is light heat on my chest, and in the winter just remembering to insulate my chest and back really well especially in the areas where I tended to get pain. I also found simple distraction to be a big help, even with severe pain - the less I allowed myself to think about it, the better in general that I felt. When you say that pain affects you all day long, do you mean that it's at a level where it's interfering with your life (can't sleep, can't do normal daily activities), or just that, hey, you've got pain where you didn't before and it's annoying?

ShilosMommy, thanks for the advice.

I take Tylenol 500/1000mg when I have pain, usually at the end of the day. It does not do much, but it gives me some relief at least.

I think that my recent increase in pain is due to the cold weather and especially to my job. I have a desk job and, although I stand up regularly and try to change my position on the chair, I think that the sitting pose applies too much pressure to my infarcted area. Probably this is why at the end of the day the discomfort becomes pain. When I go to bed it's a bit hard to find a comfortable sleeping position. Truth is that some days are better than others.

I don't want to complain too much, it's just that it's annoying to have this ache all of the time :(