Pulmonary Hypertension Support Group

Pulmonary hypertension (PH) is an increase in blood pressure in the pulmonary artery or lung vasculature, leading to shortness of breath, dizziness, fainting, and other symptoms, all of which are exacerbated by exertion. Depending on the cause, pulmonary hypertension can be a severe disease with a markedly decreased exercise tolerance and right-sided heart failure.

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Heart, Blood & Circulation
/ Pulmonary Hypertension Support Group

Surgery in February

elektrik
elektrik
I'll make this my 'official' blog on the subject:

So UCSD accepted me as a possible candidate for surgery (my Pulmonologist confirmed they feel they can help me, so it's probably more a matter of 'when' as opposed to 'if).

I'm excited nervous and scared all at the same time. more as it comes....
notsopatient
notsopatient
Thanks, I'd love to hear more about what you're going through, and also about what you've experienced up till now. I'm in a bit of a weird position myself - the doc told me I had CTEPH (he said he was 'very sure' based on my symptoms) and needed the PEA surgery, but when he did the cardiac catheterization a few weeks later it turned out I didn't have PH, though my pressures were elevated. It was a weird experience to have to tell everyone what was going on and go back to tell them nah, just kidding! But now a couple months later the doctor consensus is apparently that I do have it after all, or at least will develop it, and my latest echocardiogram showed englarged right ventricle etc. So I'm in this weird wait and see kind of cycle and not really sure what to expect or how to tell if I'm getting it. i have started having some chest pain which is new and I suspect heart-related, but not really sure how to tell for sure....
elektrik
elektrik
Wow. interesting situation you have. Well the update that I have is: no update! My PCP and the physician's group screwed up in requesting authorization from the insurance company, so I lost my spot for surgery in February. Now I have to wait until (March for the evaluation and) May for the surgery!! ARGH!

My experience so far? Frustrating. I was (am) a very active person, and to go from being able to lift weights, do cardio (I am not a jogger but I used to be able to do a 7 1/2 minute mile), etc. to not being able to get up a flight of stairs without having to do purse-lipped breathing...well you can imagine.

I can at least lift weights now, if I rest quite a bit in between sets, but I'm going on two years being like this-just want to be able to be the 'old' me again.
notsopatient
notsopatient
Holy, ARGH! indeed. I know what a mental load it is preparing yourself for this surgery so I feel for you, I really do. I hope you're holding up okay until then. I don't have to use my imagination on not being able to do a flight of steps without pursed-lip breathing, that's where I was at before a round of pulmonary rehab in the fall. :) Here's hoping things turn around quickly for you.