PPH Diagnosis "Out of the Blue"

Mankato, MNCarolyn W. took Fen-Phen so long ago and for such a short time that she forgot about it. But she was recently diagnosed with PPH (also known as PAH—Pulmonary Arterial Hypertension) and the first question her doctor asked was if she had taken any diet drugs. Carolyn is now getting all her medical records so she can join a class action lawsuit against the makers of Fen-Phen.

"I was a flight attendant and a co-worker told me about a doctor in California who prescribed diet pills," says Carolyn. "I wasn't really overweight but in this line of work, especially in the 1990s, it was an issue. I was prescribed Fen-Phen in 1995; this doctor sold them out of his office. I had insurance through the airline so they paid for the office visit but I paid cash for the meds.

I knew something was wrong when I started to get out of breath just from walking and my heart pounded so much after climbing a few stairs. And my ankles were really swollen. I went to ER and had a battery of tests and several x-rays. They said I have an enlarged heart. My dad died of heart failure so it scared the hell out of me. I did aerobics regularly; I ate right and took care of myself. I was only 50 and I'm looking good, people would guess me as 40—this diagnosis came right out of the blue.

I got worse and wound up at ER again. I was so bloated; I was retaining fluid and my blood pressure was so low I don't even remember how I got there—I couldn't breathe. The doctor at UCLA medical center told me I had to see a cardiologist. I had an EKG and it was not normal. Without alarming me they said I was going to stay so I was at Harbor General for a week and had a slew of tests; they even tested me for lupus. My right ventricle was enlarged but my lungs were clear; they couldn't figure out what was wrong until the last test--an echocardiogram. They released me and said I had to come back in a week for results. In March, 2006 the doctor said everything indicates PPH.

Currently, there is no cure for PPH but in the past 10 years, there have been new treatments. And the cardiologist says I will feel better—he told me about the Lui Pulmonary Center—a private clinic. They were having clinical trials for Ambrisentan (which is used to treat PPH) and suggested I try to get on it. I called and talked to the nurse. But there were no openings until September—this was June. I read that without treatment, survival rate is sometimes only a few years. I was desperate, I kept bugging them. They were very compassionate but only had so many openings. Finally I was able to get an appointment and saw the clinic's cardiologist. He ordered a liver function test and I qualified for the trial.

It took about a month to feel better and I lost 5lbs right away just in fluid. I just now ended the trial and it was approved in June 2007. But I still don't do well with stairs.

Was Fen-Phen to blame? It is too coincidental not to be the cause of my heart problems. There is genetic testing and it is being done in a clinical trial; if more than one member of your family has PPH, then it is genetic. But nobody in my family has it. This disease is horrible. Looking at me you would think there is nothing wrong, but if I walk up an incline or even a few steps, I huff and puff like I weigh 300 lbs. If I exert any motion such as cleaning the house, I'm spent. My heart feels like it is giving out. And not knowing what was causing all these symptoms gave me anxiety and stress, just making me worse. When I get excited, I can't physically 'come down' like normal people; my recovery time can be a few hours.

As for work, I had to quit. I was also a manager of a storage facility that had a lot of stairs. They let me go in August 2006. And I definitely can't fly, even as a passenger it is difficult. I have been officially diagnosed with moderate to severe PPH: according to the NewYork Pulmonary Association there are four stages and I am in stage 3: stage 4 means you need a transplant. I know I will likely die of heart failure. And I don't believe that PPH is as rare as people think. I've met a lot of people with this disease in online forums and through support groups. I also believe that many people have died from heart failure not knowing that fen-Phen was to blame. Now I am out of breath, I've gotta go…"