There's a very recent post here from someone whose pulmonologist preliminarily diagnosed him with PH but after he had a heart cath, they found that he was fine, no PH. So let's hope that's the case here as well. Just try to get a definitive answer. Research is good but it can also make you worry unnecessarily.

Ya, that's unfortunately true, and I've done plenty of research :-/

Maybe stop the research for a bit and just regroup, get the heart cath and go from there. If your docs seem optimistic I'd rely on that for now. I mean, that seems like a more reasonable approach over creating a scenario that may or may not be.

Without knowing much more about your original PEs, I'd echo the advice to be a bit cautious in assuming the worst. Echos are notoriously inaccurate for estimating the pressure and a heart catheterization is really needed before any diagnosis is made. Often this is done> 9 months after the original clots as many people with large PEs get some degree of PH after the event, but it often resolves itself.
You must have had another CT scan to say that most of the clot has been resolved? If so, did they give an indication of what "most" meant? Also, did they give you any idea of heart problems (right ventricle)? How do you feel overall? Inoperable CTEPH isn't great (don't assume the worst), but some of the info about 2-3 year prognosis isn't necessarily that up to date with some of the recent drugs. There are plenty of people on the PH boards who've been around for many years.

From what I've read, the echocardiogram is almost always the first test they order; if they then suspect PH, they may then order the heart cath for an accurate diagnosis. If you have a PE my understanding is that they'd wait to order the heart cath because typically the issue resolves over time. Did your doc literally diagnose you with severe PH? Because I'm not sure that kind of diagnosis can even be made without the heart cath.

This an excerpt from information on PH on AAFP.org, addressing secondary PH due to a PE. This may be why your docs seem upbeat:

"Pulmonary hypertension may occur when blood flow through large pulmonary arteries is hindered. The classic cause is pulmonary embolism. Acute pulmonary emboli induce only a mild to moderate elevation of pulmonary artery pressure. Acutely, the right ventricle is unable to generate a systolic pressure greater than 50 mm Hg; a higher systolic value suggests a chronic process with right ventricular hypertrophy. Therefore, a massive pulmonary embolus may cause right ventricular failure but not severe pulmonary hypertension. Chronic thromboembolism can provoke severe pulmonary hypertension, but this condition occurs in fewer than 1 percent of patients with thromboembolic disease."

I agree wholeheartedly with what the others here have already said. Don't bury yourself under assumptions and too much research. Research is great in a way, but I have found that when we are dealing with something (or potentially dealing with it) we tend to overlook the more positive information in favor of the worst case scenarios we see talked about.

Remember that even if you are ultimately diagnosed with PH (which won't actually happen until you have the cath to confirm) there are so many factors which determine the ultimate outcome of the situation, including the reason for PH, the severity of it, how well your body's response to treatment is, whether you have other conditions which could be contributing (like untreated sleep apnea), etc. Also in my opinion you are quite early in the timeline of you PE recovery to be going down this road already. If I were in your situation, I'd still hold out some hope that even if your arterial pressure are held up by the cath, they could still further improve over the next several months.

I have been personally frustrated that we have recently had on this group a jumping to conclusions that a diagnosis of PH means certain death within a few short years. That's just not necessarily the case, especially for those of us who are younger and generally healthier. Because remember that also, much of the information which is readily available about PH is talking about a population of patients which is generally elderly and/or with multiple existing health problems. So remember how skewed information from studies can be. If you see something that says, for instance, that survival is 5-10 years (I'm just making these numbers up), but 75% of the patients studied were elderly or had multiple cardiovascular problems or possibly had PH for years before diagnosis (which is not uncommon), well then how much does an estimate like that, with most patients studies already having a low life expectancy, skew the good results for younger, healthier patients who are diagnosed early and take proper care of themselves? We have to remember that we are individuals, not the predestined fulfillment of an empty statistic.

It is good your doctors are looking at this now, if you have this problem then obviously your best prognosis is with earliest possible diagnosis. It's a very good thing to have it checked out, and know what you're dealing with, but there's really no reason to be depressed over the possibility. A little scared and concerned, yes that's normal, but depressed is assuming an end which you don't know yet. Wait until you find out what exactly is the situation.

I don't know whether this helps or not, but I had severe PE a little over six years ago. My progress tapered off somewhere between six months to a year after, though I was not "waiting" for emboli to dissolve because mine were dissolved almost immediately by thrombolysis. I'll fast-forward through a lot of stuff, but suffice it to say that despite my best efforts my body just couldn't function anything like what should and basically every day was a real struggle. Then, I was diagnosed about a year ago with PH. My life didn't get worse with diagnosis, it got better. And I don't plan on kicking it any time soon either. I'm sure my perspective is different than yours, because I had this problem during several years, without any medical assistance and so I know just how bad it can feel to try having a normal life, raising a family but just not physically able. My life still isn't the same as before PE, but I do have a life again now, and I don't have to measure out every ounce of energy I spend. I'm finally glad I survived PE, and I feel like I'm living now rather than slowly dying. There's no way I can explain everything I've gone through, but for me diagnosis of PH saved my life, it didn't end it. The medications I've been using for the past year have completely changed the way I feel physically, and my life feels good again. At last. If I could have saved myself all the suffering of those five years undiagnosed, I absolutely would, because what I most resent is the feeling that I could have been this much better all along, but I had doctors who didn't care enough to look further. I know you likely don't feel this way right now, but I consider you quite fortunate to have doctors who are looking at this now, and you'll know what you're dealing with and how to manage it, because treatment is the key to quality of life as well as longevity. PH isn't a death sentence, it's just another facet to life, and you learn to navigate just like anything else you don't expect.

Until you know more for certain, I will continue to hope for good results from your heart cath. You may very well get better news than you're now expecting.

Thanks everyone for the positive and informative words. Yes, I know more than I've posted (specifically that my Right ventricle is severely dilated, for one) and ya, I've tried to lay off the 'research' until the cardiac cath....it's just been 6 months and I guess I'm just really frustrated I can't do things like I used to. I was *extremely* active before (P90X teacher) and though while I can still do some exercises, I get winded going up a flight of stairs. Bless all of you who have been dealing with these for longer, because there are day where I truly feel like I'm going mad...

In some ways, you sound similar to me. Previously active (cycling/swimming), similar age (:-)). I had massive bilateral PEs in Nov 2012 which recurred in July 2013 I was being scanned (echos) every 3 months to see what was happening to my heart (dilation and pressure). I've felt fairly rubbish for most of this time, and although this year has been a bit better than last, its certainly not as good as I hoped. This led to a proper investigation a couple of months ago (right heart catheter, ct, nuclear vq, ....) and it looks like I've got some chronic lung clots without the PH (though the doc did throw a "yet" into the answer). Not sure whether my glass is 1/2 full or 1/2 empty, but it is what it is.

No idea how/if this will relate to your investigation, but good luck and don't worry about being frustrated/mad. It wouldn't be normal if you didn't.

Thanks Rosie. I just get so when I see people who can bike faster than me, WALK faster than me, and actually take the stairs... I know this isn't rational, but then this situation is crazy anyhow!

I used to be in the shape of a 20 something-year-old, and now I can't even keep up with the 80 something-year olds :-(

If you've got pulmonary hypertension as a result of blood clots, surgery depends on where about the clots are in the lungs. If they're at the bottom of the lung, the surgeon won't be able to reach them, hence inoperable.
I had the operation in June this year, pulmonary endarterectomy, my clots were near the top and now removed with surgery.
Rechecked last month, 8 tests and scans plus right heart catheter, and no hypertension,
You need to wait and see what they say after you've had the RHC.
Good luck

" If they're at the bottom of the lung, the surgeon won't be able to reach them, hence inoperable. "
From what I read there are 4 'types', 3 of which are operable, but 1 of which that isn't.

Here's my source: http://www.archbronconeumol.org/en/chronic-thromboembolic-pulmonary-hypertension-surgical/articulo/13146958/

In that paper, the 3 operable groups are all about clots at or near the arteries. The clots will be larger (and smaller in number) and hence easier to remove/scrape out during the op. If they're in the veins, there is probably a larger number of them and they're much smaller so would be much more difficult to operate on.

I think you're both saying the same thing ...

probably. This would all be so fascinating if it weren't terrifying at the same time...

Where are you based?
I had the surgery performed at Papworth UK
Only 4 hospitals in the world are able to perform this surgery, San Diego in usa and one in Paris , also one in Far East