And I am already on a PH discussion board. We both (Dondra and I) feel like she needs more meds than just the O2, and I will do my BEST to get her on them. Right now, we’re in her “Medicare Gap” and our pharmacy (thankfully) is loaning her meds to us (not the PH meds - which we don’t have scrips for).
I never knew there was so much about Medicare! I just always thought than once you got it, all your troubles were over.
Bat-Shit. I keep telling y’all this, but no one believes me.
Please believe me now and send some very good mojo to my loving wife.
Just in case it’s not come across in your discussions, reading, etc., ‘pulmonary hypertension’ isn’t a single disease; it’s better viewed as a syndrome with a (large) number of potential causes. As I alluded, the treatment approach and prognosis varies among those causes.
Actually, the Wiki article on pulmonary hypertension looks thorough if nothing else. Have you looked at it? There’s a fair bit of jargon (as usual for Wiki stuff on medical diseases and science and math topics) but I still think you may find it worthwhile (feel free to ask if there’s anything that you’d like elaborated).
I will also point out that a diagnosis of pulmonary hypertension, especially if made by echocardiography (i.e. often when symptoms aren’t prominent), can sometimes almost be an overstatement. In other words, if the echo-derived pressures in the pulmonary artery exceed a certain threshold, then, by definition, pulmonary hypertension is present. But, you can appreciate that things are going to be very different if the pressure is 50 (i.e. barely above the threshold to diagnose PH) or if it’s 100. The former may not require any particular treatment and is probably not even going to be associated with symptoms.
Thanks, KARL (still can’t bold names, so apologies) for that very detailed answer. My wife’s pressure the last time checked was 70. We are hoping her meds (which we’re trying get with some financial assistance from the Sun Association, since she’s in the medicare “gap”, will help bring that down even further.
I have seen the wiki article, which also was informative.
I’d like to express my gratitude to you and all my other friends her for your concern and information!
May I ask, pcarew, do you have primary pulmonary hypertension (PPH) or another form?
I ask because many, if not most, of the therapies you mention, are used pretty much exclusively for people with PPH. Secondary causes of pulmonary hypertension tend not to be as severe and, in many cases, are less responsive to such treatments in any case.
My late wife had PAH as a symptom of her systemic scleroderma. The only reliable way to diagnose PAH is with a right heart catheterization, which threads a catheter from the jugular vein in the neck, down through the heart to the pulmonary artery, where the blood pressure is taken. Pulmnonary artery blood pressure cannot be taken with an arm cuff.
My wife’s PAH was treated with Viagra, three times a day. Seriously.
In my case, it is secondary PAH due to congenital Heart defects.
I was diagnosed last year with severe PAH (PASP of 145).
The medications are making a difference (I’m on 2 different oral meds).
And for those people that are not aware, the current crop of Erectile Dydfunction drugs (Viagra, Cialis etc) were originally developed to treat pulmonary/cardiatic conditions…that is until they found a much more lucrative mass market!
There is solid research going on and a slew of clinical studies underway for PH (Primary and Secondary).
There has been great success with both the original intraveneous meds as well as the oral viagras of this world.
There is also a new set of inhaled meds that are in trial.
On top of that there is a trial underway in Canada for a stem cell treatment.
From the other thread where Mrs. Modem was in the hospital, I think they did the right cath procedure fairly recently.
Quasi - if it helps in your googling, I think it’s spelled Fen Phen - for Fenfluramine / phentermine. The first site that crops up when googling “fen phen pulmonary hypertension” is pph-net.org. I have no idea how biased (or not) that site is.