Fen-Phen User's PPH Misdiagnosed as Asthma

Cartersville, GASince 1996, Barbara has been suffering from symptoms similar to asthma; her breathing problems began shortly after taking Fen-Phen. But after countless tests and thirteen years later, Barbara found out that she didn't have asthma as her doctor initially diagnosed: instead she is suffering something much worse: Primary Pulmonary Hypertension (PPH).

Barbara was prescribed Fen-Phen back in 1996 for weight loss but she only took the drug for three months. "I couldn't catch my breath and went to my doctor several times until he finally diagnosed asthma," says Barbara. "It was really strange and didn't make any sense, getting asthma at my age.

Then I saw ads on TV about Fen-Phen and its association with respiratory problems but my doctor said he didn't know about it. He called back the next day and said for safety sake, let's take you off Fen-Phen.

By October of 1996 I was still having problems so he ordered an echocardiogram but nothing showed up. My breathing was getting worse even though I was taking a lot of asthma meds, steroids and more. The following March I went to a cardiologist. An EKG showed a mitral valve problem and as of last year I've had six echocardiograms done: the last one showed my pulmonary pressure between 35 and 50. Normal is between 12 and 20.

When I found out that my mitral valve problem was related to Fen-Phen I hired an attorney and became part of the class action suit against American Home Products. But the suit was only for mitral valve problems, of course at that time I wasn't diagnosed with PPH.

Last month I went to my pulmonary doctor and I just couldn't breathe. I went into his office, sat down and cried. I talked about Fen-Phen and asked him if it could be to blame. He said that for someone who never smoked or worked with chemicals something had to be wrong. Mitral valve regurgitation is a problem but it would not cause these wheezing and breathing problems.

So I had another echocardiogram and a tee test—they put a tube down your throat into your stomach with a scope and turn it around to view the heart. I had a heart catheterization too. Between the cardiologist and my pulmonary doctor I was finally diagnosed with PPH. There is no cure.

I've been on PPH meds for three weeks and so far it hasn't helped. The more active I am, the worse it is. I am overweight because I can't do anything. Last year I was swimming all the time but it was one of the worst things I could have done because I exerted myself. If I was diagnosed with PPH years ago there may have been a treatment plan. I am now at stage 4: my breathing is bad at rest and exertion; I can't sleep some nights because it is so bad.

I just had occupational therapy yesterday and have to get a wheelchair but it is going to cost me a fortune. I live alone and I'm now housebound. And I'm an emotional wreck.

According to the PPH association, it is common for your family to deny your illness. My kids always thought I was indestructible and they can't believe their Mum might not get through this. I have to get a will made, decide where I will be buried, the whole 9 yards. My kids think I am being negative but I am being realistic.

Fen-Phen was put on the market by a company who didn't test it enough…if only I knew."

Although Barbara says she was misdiagnosed with asthma, PPH can be left undetected for years. If you took Fen-Phen--even though it was more than a decade ago--and have respiratory problems, it might be a good idea to speak with your doctor and get the necessary tests.