Sounds pretty normal in recovering from a PE. You feel rubbish at times (maybe weather ...), but things usually improve slowly.

If your heart ECG scan was normal, there is little chance of PH. You should be able to find out what your pressure reading was and convince yourself its in the normal range. Your doctor sounds like he is right.

There's really a lot of things that can cause a couple weeks of being SOB. I remember there was a point, about two and a half years out from diagnosis, that I suddenly got seriously SOB for a couple of weeks. Taking my inhaler every few hours and everything. At that time, I was completely convinced that I had re-clotted (even though I was on warfarin) and wound up at my doctor's office in a complete panic.

Well, long story short, it wasn't another clot. We traced my symptoms back and realized they started the day we had the carpets cleaned. The fumes from the cleaner were just too much. A few good vacuums and leaving the windows open and I was much better.

Of course, it could also be weather related. Or, if you're pushing yourself a little more than you have been, it could be that too. Or you could be fighting a cold. Could be a lot of things, but I do know that I it sounds pretty normal for PE recovery. I had bouts of SOB and increased pain up until 11 months after my diagnosis and it was always just me pushing my lungs a little too hard.

I had pain from the clots 5 months before I was diagnosed so thats why I'm afraid of developing pulmonary hypertension. Do you know if it's common? I can't trace the SOB back to anything specific and I've been ok in the cold weather up until a few weeks ago.

PH is about the pulmonary artery pressure being outside normal limits. Normal is something like 0 - 25 mm Hg, although most guys diagnosing it won't be too worried until it is much higher than that. If you're in the range ~25-40, you'll probably be just monitored.

With PEs, they generally give you 6-9 months for your body to sort itself out before even considering PH. If your ECG scans and hence pulmonary artery pressure are OK, you are unlikely to have PH. I believe PH (CTEPH) develops in a few percent (1-3) of acute PE patients. Having clots for a few months before a proper diagnosis isn't too unusual (unfortunately). If you're scans show that your heart isn't too affected, you've come out OK.

With me, SOB, dizziness, ... comes and goes. There is still quite a bit of time before you get back to something approaching normal.

Well you can trace it back to having had a PE. It's not unusual to have some SOB, chest pains,. etc post diagnosis for a while. I didn't have any pain before my PE diagnosis but I had it after my diagnosis. I did have heart damage initially but it was diagnosed while I was in the hospital with my PE. It greatly improved within 6 months and then within the year of my diagnosis, it completely resolved.

If you really worried about it and you find it is not improving, I think it's a discussion reserved for your doc, since they have all your history, test results, etc.

I've talked to the doc about ph and all say don't worry about it but I feel like they brush it off because I'm young. My hematologist left and I have yet to be assigned a new one.

Did they see anything with your heart on any tests that would lead them to believe you have PH? If not, then this is where you stand at the moment... no indication of PH.

What about just taking a wait and see approach. Could you see if your SOB worsens over the next few weeks. Or determine if you're experiencing other things that can be indicative of PH, like SOB after exercising specifically, dizziness when getting up, edema, racing heart, etc. If so, then see your doctor and say, ok, my SOB is getting worse, or now I have xy and z symptoms.

Remember too the more you focus on your breathing, the more it can make SOB feel worse. So take that into consideration if you're finding you're getting anxious.

We can't tell you for sure if you don't or do have PH. You have to rely on a doctor to make that diagnosis. I don't know that they're dismissing you because of your age. It may just be you don't present as someone who has PH at this point.

well put. my heart has actually been on pretty good pace with normal. sometimes more rapid. breathing is worse when i focus on it but for sure it has been worse on its own the last few weeks. wait and see is fine i just have a hard time trusting some of these doctors i guess.

I get the trust issue. It's hard to trust after such a scary health event. And I'm not saying wait if you feel like it's really an urgent issue to address or you're really physically struggling, just that sometimes, (unless I think something is going to kill me on the spot) if I give it some time, it gets easier to pin point whether there's improvement or if it's getting worse.

This morning, I was having a weird breathing issue. It's so super windy here this morning, blowing all kinds of crap and snow around and it's about 20 degrees colder today than it was yesterday and it sort of took my breath away when I was walking from the house to the garage. It took a couple of minutes for my chest to not seize up. So weather can be factor. My PEs were several years ago and I still have those moments.

did your pain after recovery ever feel like it was, idk how to put this...bubbling? like air bubbles in a water cooler or something? it has done that to me two or three times. its quick but it hurts and feels like bubbles kind of. it's odd

I mostly recall sharp, stabbing pains in my upper back and feeling like whenever I moved my shoulder, it would hurt. I also had what felt like pressure on my back. It wasn't pain so much, just feeling like someone was placing their hand on my back. That I had before my diagnosis and then for a while after diagnosis.

I think pain is a hard thing to describe because people interpret it differently.

I have been having problem with gastritis since my PE. Apparently Warfarin can irritate the stomach, and I have a history of stomach problems. I was diagnosed with gastritis probably 5 years ago. About 2-3 weeks post PE I was back in ED with chest pains. Stomach was (still is) tender - leading to final diagnosis for the chest pains of gastritis. Put me on sucralfate (pill is 1 gm) - it coats the stomach. What they said was causing the apins up above the diaphram was referred pain.