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Pulmonary Fibrosis: What Should Women Know?

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Joan shares what other women should know about the fatal lung disease pulmonary fibrosis (IPF).

It takes your breath away. It’s fatal. Jerry Lewis has it. He has lived longer than anyone. We have tried to get him to be a national spokesman for pulmonary fibrosis, but he does a telethon for muscular dystrophy. When he found out he had it he started on high doses of prednisone. That’s what made him swell up so bad.

Marlon Brando also had it. Back when he died they didn’t have a name for this disease. It was just given a name in 1999. They treated people for COPD, emphysema, but that is not this disease. The only thing that will really save you is a double lung transplant.

I asked, the first thing I said when I started going to the University of Washington because I know they did the transplants up there, I said, “I want to get on the transplant list.” I am too well. I said, “But don’t you want someone that is still well enough to make it through the surgery; they are still active?” “Well yes, we would like that but because there are so few lungs available, we need to give them to the people that are most critical at this point in time,” and at this point I am almost too old to get a lung transplant. So that’s another downer for me.

If people that are in their mid 60s are younger they need to be tested immediately. Get on that list because once you reach 68-69, they have done one here at St. Joseph’s. He was 71; he is still doing well. I hope to be either that way or I have got to stay well for a long time and so the questions, if you have any idea that you might have something, I blame this disease really on me having pneumonia so many times. This is the way they caught mine was through an x-ray because I had pneumonia. I couldn’t get over it.

Now the minute I get sick they hit me with as many antibiotics as they can possibly hit me with. They don’t want to go on to my lungs and a sore throat. We were due to go to Spain last year. My girlfriend came to the beach with her little granddaughter that had a sore throat. I stayed away from her. I still got it within two days and the day that I called and canceled our trip to Spain I had a temperature of 102 and they were pouring drugs into me.

So, when I say it could be fatal, I could be healthy today and gone tomorrow because the disease, once you get sick and the way the fibrosis develops in your lungs, when you get sick it’s like it goes rampant.

It just takes off no matter how many antibiotics they give you. I know of two people that have died because they got sick and they died from idiopathic pulmonary fibrosis, but the real killer was pneumonia.

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