PPH: "I Feel so Useless"

Gordonville, TX"I took Fen-phen in the '70s but it made my heart race so much that I quit," says Debra R. "I forgot about it until my cardiologist asked if I had taken any diet meds...to make a long story short, I was diagnosed with Primary Pulmonary Hypertension (PPH) in 2003—how ironic that I am a respiratory therapist."

Debra had to see a cardiologist because she was having dizzy spells and couldn't catch her breath; she ended up in ER—her heart rate was really slow. The cardiologist told Debra that he was going to insert a pacemaker. "I was shocked, stunned in fact," she said. "But then I thought if I've got to have it, better than heart surgery."

Debra had the pacemaker implanted and went back to the cardiologist for a follow-up a week later to get yet another shock: he told Debra that she might have PPH. "I had more tests, including a heart catheterization and that's what determined that indeed, I had PPH," she says. "The doctor put me on medication and I have been going back and forth to the doctor since. Next week I am having an echocardiogram and getting the pacemaker checked.

He also arranged for me to see another cardiologist in Dallas who is a PPH specialist. One of the first things he asked me was whether I had ever taken diet drugs, specifically about Fen-phen. I also took over-the-counter diet drugs. And a doctor in Vernon, Texas also gave me some diet drugs—I think he was passing them out to everyone at the hospital where I worked as a respiratory therapist.

I'm now on oxygen and have to sleep with a bi-pap machine. I retired on disability many years ago due to back problems but then I started having a shortness of breath in the late 1990s—twenty years after taking diet drugs. How was I to know this was the cause?

When I was first diagnosed, I didn't know what it was. The PPH specialist in Dallas explained it to me. All these years, I never thought there was anything seriously wrong; I was always diagnosing myself. I had asthma as a kid and thought it was coming back. But that didn't explain my dizzy spells and weakness in my legs and arms, sleeping all the time. I was only 51 when I first started realizing there was something more than my back problems making me feel this way.

When I was first diagnosed with PPH, I came home and looked it up on the internet and filled out a form on the PPH website. A nurse called me and we started talking--I told her that I had a problem retaining fluids and it was getting worse. Years ago a doctor told me I had congestive heart failure and prescribed Lasix but another doctor told me to lay off the Lasix. She told me that if I didn't take Lasix with PPH, I would die. It scared the hell out of me. So I took Lasix every time my toe swelled up—I didn't even wait for my leg or arm to swell. Then he prescribed me potassium so I wouldn't get cramps. Now I am really concerned.

Today I thought I could mow the lawn on the riding mower. But between the dust, grass and heat, I didn't get a tenth of it done and had to come back inside. Right now, talking to you, I am lying down so I'm not short of breath but when I move around or try to carry anything, even a bag of groceries, it wears me out. I live alone—I wish someone could help me with my housework.

I don't know what to expect from a lawsuit. I would love to get enough money to put a ramp on the house so I can use my electric wheelchair; I have a handicap sticker on my car so I can get close but I have to catch my breath before I can get a cart. Pretty soon I am going to need some help. I feel so useless; I was always such a workaholic."