Try talking to SandieG, I know for certain she has been diagnosed with pulmonary hypertension and has been receiving treatment for it, a little over a year I think, and she's been doing quite well since getting treated.

I'm really sorry that you're still experiencing so much difficulty despite the clots being gone. Despite being two years since my massive PE episode, I actually still experience a lot of these same symptoms, although I likely don't have pulmonary hypertension since my understanding is that that usually happens when there is either clotting or scarring in the primary pulmonary artery. I know I don't have that because the clot busters got rid of the clotting, but I've been told that I likey have damage in that artery because it was nearly completely occluded up to the edge of my heart, hence my continuing symptoms. Sorry I know I'm not much help, only to say symptomatically I can empathize. And as I said, I know for certain that SandieG can help you and I'm pretty sure she still checks in here occasionally. In fact if you like I can send her a note too about it.....

I was diagnosed with Idiopathic Pulmonary Hypertension about 3 years ago, and a thoracic aortic aneurysm along with hypertension.I'm on medication for the HTN and monitoring for the IPH and aneurysm. I get a chest CT scan every year to monitor the size of the aneurysm, which has not changed since the diagnosis. I had a massive PE (saddle) on July 16th, which exacerbated the pulmonary hypertension due to pressure on the pulmonary arteries from the clot. I am now being followed by a pulmonologist, but so far, other than the coumadin, there has been no change in my treatment; I was put on a 2GM Sodium diet in the hospital and have maintained that diet since being home. I still have chest pain and residual SOB, but I walk daily and drink lots of fluid and adhere to my medications. I just had a cardiac stress test and echo, and they were normal, so I'm just living my life and enjoying every day. The pulmonary htn is still there, the aneurysm is still there, and the clot is still there, so I can relate to your sense of anxiety. The best thing to do is to manage your symptoms, call your Dr. or go to the ED if you get in trouble, and keep up your routines.
Perhaps there's someone else with the same issue who can weigh in also.

Thanks, y'all.

ShilosMommy, that would be great if you would let SandieG know about this discussion for me. I am sorry you still have so many of the difficult symptoms 2 years out!

jrlamb, how did they diagnose the pulmonary hypertension?
You mentioned having an echo. Is it possible to have a normal echocardiogram and pulmonary hypertension? I ask because I had an echo and was told it was OK. Do you take anything for chest pain? It is keeping me from sleeping at night. I am sorry you are dealing with so much.

Beecute,
At one time I thought I had Ph and I sent an email to Sandie and she was so nice to me. I had an echo and my echo said PA 25. Anyway I got on the internet and read everything over 25 is PH. Well, it turns out I was wrong as there is a mean PA pressure and I was normal.
If your echo says you are okay you most likely are. However, call up to make sure.
Sometimes after a pe I think the pressure is high than resolves. Pam

It's been 3 years; I was having shortness of breath and went to my primary, who ordered an echo, which is how they found the Pulmonary HTN It's called "Idiopathic" which means they don't know what caused it. My RV pressure at the time was 40-50. My primary referred me to a pulmonologist, who did a full range of tests and I was being followed for both. When I had the PE in July, it increased the pressure even more. My CT scan at the time of PH diagnosis did not show any clots, but it did show the aneurysm. The clots came this year. My echo last week still showed the Pulm HTN, but my cardiologist was concerned about heart damage or possible MI, but the echo showed that I had no heart damage. I was prescribed Tramadol and NTG for chest pain, and I also have some Morphine Tabs (which I had to take after my little ER trip 2 weeks ago). Usually I can take 2 tylenol if pain is just starting and it helps; I go to the tramadol if the tylenol doesn't work. I'm actually back at work, fortunately I have a home office, and getting back into my walking every evening. Your pulmonary HTN should probably resolve with the dissolving of the clots, but I'm glad that you're going to the pulmonologist for further evaluation.

jrlamb,
thanks for the details. I am sorry you are dealing with this.

My clot has already resolved.
That is what is worrying me. I don't know why I feel so much *worse* now than I did when I first got the PE.

I have to wait almost 3 weeks to see the specialist and I can't sleep due to the pain and palpitations.

Hi Beecute - try to stop worrying!
Easier said than done and don't I just know it !
There are different sorts of PH and mine is called Chronic thromboembolic pulmonary hypertension which was caused because the clots in my lungs had probably been building up for over 12 months before they were eventually diagnosed and a lot of small clots have become embedded in the walls of the arteries so I'm stuck with them! They can be surgically removed but I wouldn't consider that unless I felt a lot worse than I do now.
As far as I know it's the only form of PH which can be cured and quite a lot of PE patients seem to get it to some degree because the heart is unable to pump blood through the lungs when there are blood vessels blocked by clots.
The first indication for me was shown on a heart echo and when there was no improvement 3 months later I had further tests including a right heart catheter which is the best test for PH.
When you've got time - or are really feeling bored.....take a quick look at my journals on here as I found that it helped to write everything down at the time so you can see all the tests involved.
A word of caution......don't pay much attention to the PH group on here! Most of the members are lovely but seem to have lots of other medical conditions and are on oxygen 24/7 or even housebound and it really used to upset me when I joined that forum so I don't look at it any more!!!!
It's highly likely that you haven't got PH as its very rare so try not to worry but message me if you've any questions or just feel like a chat and if I can help you know I will - love Sandi xx

Good Luck! Let us know the results.

I'm glad you posted this because I hadn't heard of PH since I'm new to this. I have been having SOB and pain in chest but my clot is still new and has not dissolved yet. However yesterday I had a new onset of pain in my chest above my heart then the SOB started with pain. I'm going to see the doctor today so I will ask about this.

I'm so glad we can be here for each other! It calms my anxiety.

Thank you, SandieG.

Your advice is good. I am trying to stop worrying. I have forbidden myself to "google" pulmonary hypertension and I'm not looking at the group here. It just makes me more anxious.

I am pretty sure that I have it, given that my clot is gone and I get worse every day. I am having trouble with one flight of stairs. I even have trouble carrying my purse sometimes. I can't stand long enough to wash the dishes w/out being out of breath. My chest hurts all the time. My resting heart rate is around 100. I'm sicker than I was after my massive bi-lateral PE.

My primary care doc is at a major university hospital (and trained at Columbia and then Yale) and referred me to a top specialist in pulmonary hypertension who only sees patients with this condition (rather then just a general cardiologist or pulmonologist). I don't think she would have sent me to him if she didn't think this was what I have.

But...I have not had the tests to confirm it. And I won't see the specialist for 2 more weeks. So I am going to take it one day at a time and do my best not to worry. In the meantime, I am enjoying time crocheting, hanging out with my dog and watching silly movies. I am not spending my time reading about scary stuff when I haven't even had the tests...

I am thankful to have y'all for support.