Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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Pulmonary Hypertension

bschmied
bschmied
Hi everyone.
I had my multiple bilateral PE 7 months ago. I was carrying the PE's for about 6 months...my breathing was getting worse and worse over time until I went to the ER and was diagnosed. I have since been diagnosed with Factor V Leiden, so at least we know the cause.

Unfortunately my breathing seems to be getting worse over the past couple of months. I am a 3x a week exercise guy, but I just do not have the breath to do any kind of cardio..no matter how light. Stairs are even getting difficult. So I was sent for a VQ lung scan which showed many clots still in my lungs. The doc said that sometimes the clots will not dissolve completely over time if they go undiagnosed for a long period of time. In any case, the risk is developing Pulmonary Hypertension and from my quick research....this is something that is not good at all.

My echo cardiogram early on did not show damage to my heart, but they are now sending me for another one as well as a breathing test.

While all of this has been going on, I developed a seizure and anxiety problem that I am dealing with too.

Was hoping someone might have some experience with Pulmonary Hypertension and could give me an idea of what to expect.

Many thanks and best wishes.
Bill
deleted_user
deleted_user
Hi bill I am two and a half years post bilateral severe Pe's and was diagnosed with mild raised pulmonary hypertension a year after my PE,s this was diagnosed with a cardiac catheter test. like you when I read about it on the Internet it was scary and it knocked me for six. I was cared for by a specialist in pulmonary hypertension here in the uk they were superb and my most recent CT scan and echo showed that things had settled. I have now been discharged with a confirmation that I have some damage to my lungs but things have improved a heck of a lot to the extent that i have started a supervised exercise programme which is going really well. Can I suggest just take it one step at a time and don,t let your mind race to far into the future. Once the docs get the results of your latest round of tests you will get a much better picture of what the future might look like and what treatment options might be helpful to you.. From what you have posted It sounds like the docs are still in the early stages of assessing whats going on. I remember how horrible this stage is living with uncertainty. There are a few sites I found helpful the American and uk pulmonary hypertension association sites

All the best mr the runner
bschmied
bschmied
Really appreciate the response...thanks.
deleted_user
deleted_user
When I was diagnosed with my multiple P.E's, I was also diagnosed with severe pulmonary hypertension...they said the pressure was something like 4x the normal pressure you see in there....they told me that if the clot cleared it would most likely resolve itself. I was discharged and tested 6 months later, showing that my clots had resolved and that my PHT had also resolved itself.

Exercise is your friend, you just need to build it up, I was in the same position where one set of stairs was a days worth of effort for me. I gradually did more and more, then could do that twice a day and now, just over 12 months out I can do walks of around 3 miles and be all right afterwards. It is all a build up.

Remember you won't be running a marathon tomorrow, but it won't stop you doing it in the future!

Get your results back and you'll know what can be done and what needs to be done.

Don't lose faith in yourself.

Stuart.
purplemem
purplemem
Three years now post PE and I have mild pulmonary hypertension. I was started on a mild exercise program a year ago of 3x a week, 21 minutes at a time. I gradually built to 45 minutes. Then I had more blood clots, twice, when taken off blood thinners for hospital procedures. Now I am back building again from the original 7 min treadmill, 7 min cardio, and 7 min biodex machine (which works arms like a pedal and increases lung capacity.) This type of PH does not respond to medication. On the other hand, it also doesn't progress like the one of which you are reading with the negative prognosis. This kind slows you down but doesn't take you out.