I think the mortality information you provide depends on severity, age, overall health and other factors, right? I mean, otherwise, are you saying that 20% of PE patients will develop PAH and then die from it in 3-5 years?

I just want to be sure the context of this information is correct because we always have new people here who freak out that they're going to drop dead and the thought that their residual fatigue, just pain and shortness of breath that most of us experience during recovery is actually PAH could really send them over the edge.

I would definitely be one of those that rmb is talking about. I'm a little over 6 months out and i still have some pain and i get short of breath still. I worry that its PAH but i also have not exercised in a long time and don't know if it's from lack of conditioning. None of my doctors seem to be worried about it but I definitely do.

isnt the 3-5 years prognosis for the idiopatic PH? As i know 4% of patients who survive PE's cause CTEPH, but at some cases they require surgery...
And isnt there difference between PAH and PH?

From what I understand PH is a general term. PAH and PH are different in that PAH is a specific type of PH. PH doesn't mean you have PAH. CTEPH is another form of PH

I question that 20% of pulmonary embolism will develop PAH specifically.

Bottom line, work with a cardiologist if you really think you have some type of PH.

I read 4% of people get CTEPH which is the kind of PH that occurs in people who survive PE

Means 96% don't get CTEPH which I'd hang my hat on.

Purplemem,

Thanks for highlighting world pah day. I wish you well in your efforts to get through each day. I am almost four years post severe bilateral PE,s. Three years ago I was diagnosed was mild PH not caused by cteph. I shall never forget the time my wife and I were told that I might have progressive cteph judging by my symptoms our world was turned upside down. Fortunately things have improved for me but I shall never forget how awful I felt for some two and a half years with the daytime hypoxia, terrible fatigue, and shortness of breath. You are in my thoughts and prayers

Mr the runner

I'm sorry. My intent wasn't to diminish how serious PAH is or to dismiss anyone who has it so I apologize if asking about some of the information came across that way.

thank you for the info!
i was sight surfing from the COPD board & i have been trying to figure out the PH vs heart hypertension for the past week & i happen on here & find this post!
ah, things happen in mysterious ways ;)

PH and PAH are used interchangeably, according to the Canadian website http://www.livingwithph.ca/disease_2.htm

According to their website, 4% of all PE patients develop PH within 2 years. I have seen it quoted as higher if you include CTEPH.

Pain is normal for the recovery from PE, but the doctors don't talk about it. Some are unaware.

Diagnosis with PH is often just as clumsy as the dx with PE was, the doctors stumble upon it when they can't think of anything else. That's why i want you to be aware and proactive.

Prognosis is mostly dependent on how fast treatment is started. IPAH is so serious because it came out of the blue and no one treated anything.

Some people have more than one risk factor, for example a PE and sleep apnea and congestive heart failure. I was one of those.

On the PH boards, there are rarely 10 year survivors. I can only determine that is because of the prognosis of the disease.

I am sorry if I am alarming people, I was alarmed that my doctor dx me with PH and never once was it discussed as a risk factor. I was alarmed that after I was dx it was 3 years before they intervened with the PH drugs because of the expense of treatment. I was alarmed when they began discussions of a transplant. I was alarmed last week, when they discussed hospice care with me. It is an alarming disease.

I also mean no disrespect to people who suffer with PH, and I'm very sorry, purplemem, that you are facing this diagnosis and have to live with the day to day reality of it. I know that must be very difficult for you and your family, and I do understand the desire to help others be aware of a problem which you're currently dealing with, hoping to help them get an early diagnosis so as to hopefully avoid the difficulties you face.

However, I do also have to take issue with the way some of the information has been presented. As I said, I understand it, because when we're dealing with a problem, we do tend to get kind of alarmist and want to shout from the rooftops to everyone we can think of to look out for this. In the early days after my PE I felt much the same about that.

But initially you said that 20% of survivors of PE will suffer the complication of PH. Then you lowered that statistic to 4% with the link which could back it up. So I don't really know where the 20% 'statistic' came from. One thing I want people who are more recently diagnosed to be aware of, is that you are talking here about chronic PH. Many PE patients (maybe even 20%) suffer from temporary, reversible PH in the early stages of recovery, until their clots resolve. If they've been told they have PH and within about 6 months of diagnosis, then most likely the pulmonary pressures will return to normal as the clots resolve, and NOT cause long-term damage.

Bsmith is absolutely right, the more appropriate term is CTEPH when suffering PH as a result of PE. It's a very particular type of PH. I do agree that doctors perhaps don't consider CTEPH often enough when a patient continues to have symptoms, but a lot of that has to do with the simple fact that not a lot of people have PE severe enough to cause CTEPH, and then you take a small percentage of that small percentage......well many doctors just don't have experience in it. If a patient believes they may be suffering from it, I agree they need to be proactive and consult with a cardiologist. I have a friend who has CTEPH, but her treatment is not particularly costly and she's done quite well and lives a good life now that she's getting treatment.

Again, I too mean no disrespect and I am very sorry for the health problems you face, purplemem, but you also mention that you have congestive heart failure and sleep apnea. Those are BOTH risk factors for developing PH. Right heart failure can even be a risk factor for causing PE. But heart failure and PH almost go hand in hand, each one exacerbates the other. My point is just that many of these types of problems either cause or contribute to the others. For patients here who are suffering similarly from multiple serious health problems, yes I hope they are aware of this complication and discuss it with their doctor. But I just hope that younger, generally healthy people can keep the information in perspective and not jump to conclusions that they have three years to live, just because they still have some SOB three months after a PE diagnosis. The vast majority of those of us on this forum will recovery reasonably well and lead normal lives after PE.

"But I just hope that younger, generally healthy people can keep the information in perspective and not jump to conclusions that they have three years to live, just because they still have some SOB three months after a PE diagnosis. The vast majority of those of us on this forum will recovery reasonably well and lead normal lives after PE."

That line right there, thank you for that.

I did not mean to imply that younger people would immediately be onset with PH. I meant to imply that anyone can get PH, which I had never heard of, if they have a PE. After more than a year of debilitating symptoms someone should check it out.

I apologize for causing widespread panic amongst the new persons here. I appreciate this board and the work of you have done to help keep US all calm.

In this recent study, the result of PAH after PE was 12%, and this was only the CTEPH type of PAH.
http://www.elsevier.pt/en/revistas/revista-portuguesa-cardiologia-334/artigo/predictors-of-pulmonary-hypertension-after-intermediate-to-high-risk-pulmonary-90267035

I've read some studies that state that the instance of PH can be higher than 20 percent, because there are people who get PE's and never go to the ER for treatment. Some people get PEs that resolve on their own, so there is really no way to document those cases. I wouldn't be alarmed at the possibility that you can get PH, but just be mindful and vigilant if you feel there is something wrong. Also in the study I read, PH is more prevalent in people who suffer from PE and have APS. APS seems to have an effect on this I believe. If I sound wrong, please disregard my statement. I'm not going to look up any long links tonight.