Pulmonary Hypertension: Do You Have It? If So, I Need.....

… your help, please. My wife has just been diagnosed with it, and I am scared to death because she is lying down as I write, and just asked me to start her oxygen.

Laying down? How can she be so out of breath, and she is?

Don’t answer me by telling me to call her doc. That’s already been done.

Right now, what I need is to communicate with any of you who have this disease.

Thanks

Bill

Sorry man, short of a lung transplant there isn’t much to do besides oxygen =(. The right heart will eventually get stressed and start to function poorly as well. Best of luck.

Are you able to tell us if it’s so-called ‘primary pulmonary hypertension’ or another form (and, if so, due to what)? It makes a big difference in the treatment approach and prognosis.

Thanks.

No. It isn’t “primary”. They found it with an Echo, and right away she needs oxygen.

Do I think she’s faking it? No! I don’t. She’s a retired respiratory therapist just like I used to be, and she cries because she feels so useless to me and her family.

Karl? In NO way am I insuating that you’re thinking that way, okay??? :slight_smile:

I’m grasping at straws, and I don’t want to lose my wife.

Thank You

Bill

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. :slight_smile:

Please believe me now and send some very good mojo to my loving wife.

We need it… Bad

Thanks

Bill

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!

Thanks

Quasi

First, as hard as it seems, don’t panic.

PH (or PAH as in my case) has many causes, but there are treatments and there is renewed research and hope.

First off, getting to see a specialist is an absolute must. Most doctors aren’t qual. to diagnose correctly.

Next, get ready for a boatload of tests.
I have had numerous echos of heart, lungs abdomen. CT scans, xrays, Heart Catheter etc.

If it is PH, there are medications both oral and intravenous that can return a semblance of normal life and function.

Repeat…Get to see a specialist, ask for the referral. The specialists are unfortunately few and far between, so you may end up traveling.

Contact www.phcentral.org and www.phassociation.org

Lastly, stop reading the dire predictions found on the Internet. They are all based upon 1980’s stats which was before any medications were available.

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.

Thanks!

Quasi, sorry to hear of your wife’s problem.

Since this calls for personal experiences about a medical issue, I’m going to move it to IMHO.

Colibri
General Questions Moderator

My dad had it (primary).

He was also a physician (internal medicine) and insisted that he be treated at Johns Hopkins where they could do research for a cure.

If it’s not primary, I believe there are quite a few treatment options. Primary is almost always fatal and no cure. It is what killed my father at 59.

Keep reading as much as you can. I spend a lot of time of the PHA site.

And because there is no cure, don’t be shy about suggestions. My dad died 7 years ago and maybe once every other month I think of something I wish we’d tried. They even tried Viagra!

I’ll keep your family in my thoughts. Hang in there.

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.

I wanted to mention that before we remarried, she was on FenFen for a while. We’re trying to get all that sorted out to see just what caused her PAH.

Q

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.

The future is bright. Get to a specialist.

Well, there are any number of attorneys waiting to talk to you. If it is attributed to one of the diet drugs, then you wont have to worry about the medical costs, they’ll be covered!

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.