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Pulmonary Fibrosis: How Do You Explain This To Friends?

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Joan recalls what she tells her friends about pulmonary fibrosis (IPF) and explains how a young doctor helped her develop a positive outlook on life.

Because I am doing so well I have a hard time trying to tell people that I am ill.

The one girl come at to me that was hosting it there at our community center club room and she said, “Joan, what is really wrong with you? You said that you are sick, but what’s wrong with you?” And I told her, I said, “I have this disease.” I told her what it was and she wrote it down. She said, “My son’s a doctor in St. Louis and when I go home I am going to ask him about this.”

I saw her the next fall. We call it next year but it was really the next season, the fall season, and she came up to me and she said, “Joan, my son said that you are going to die with this disease,” and I said, “Phyllis, I told you, I really am ill even though I don’t look like it. I no longer play cards there because I can’t trust the ladies to protect me. If they are ill for a week or two with the flu they come back early because they have been housebound.” So, I rely on my friends.

If I could say anything to the doctors this is what I would tell them – when I started going to Seattle to the University of Washington Hospital I said to the resident doctor up there, I said, “I am doing so well. Does that mean that I have got more time?” He put his hand on mine and he said, “Joan, don’t do this to yourself because it only makes the situation worse. You know what you have, let’s make the most of it.”

I liked his outlook. He is through with his residency. He went to California to the UCLA Medical Center there and I would have followed him there because he gave me a little bit of hope where the other two doctors have not, but I just decided within myself that there is no such thing as a bad day in my life and if someone is mean and grouchy I just turn around and say to them at a check stand, “Just because you are old doesn’t mean you have to have that attitude and let’s make the most of everyday,” and I try to. That’s why I am in the clinical drug trials. I am trying to help because hopefully it will help me a little bit.

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