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Pulmonary Fibrosis Diagnosis: How Did You React?

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Joan shares how she and her husband reacted when they found out she had pulmonary fibrosis (IPF), a fatal lung disease.

When I was diagnosed, the doctor didn’t tell me immediately because we were leaving for Europe for a month. I made the appointment to come back and see her and she had me sitting on the table and she started telling me that I had an interstitial lung disease and there was nothing that they could really do for it. There was no medicine. There was no treatment, and at this point in time I felt like I was going to pass out.

I could feel like you are in the ocean and the waves are coming over your head and I said, “My husband is in the waiting room, could you please get him for me?” And she said, “Well you can just get down off the table and go out and get him if you would like him in here with you.”

So he did come in and it was, we felt like somebody has shot us. We couldn’t even think correctly. She said, “Interstitial lung disease is an umbrella of sorts; there are several underneath it, but I believe what you have is pulmonary fibrosis,” and she said, “The longevity, and I’ll be very honest with you, is two to four years. Get your financial papers in order and make the arrangements.”

It was devastating to know that you could die in just a few days if you were to get sick, but she did talk to us. We went out and sat in the car. We were both shaking so bad it was hard to even breathe and my husband turned to me and he said, “I can’t even remember what it was she said that you had.”

She gave us three options – the first is to do nothing; the second was to take a cocktail of drugs, which she said right up front, “It hasn’t helped.” One was a cancer drug, another one was high doses of prednisone and three others to go with it, a total of five drugs.

Or she said, “We can do a biopsy, lung biopsy and when we get that back I can refer you to a specialist in Seattle, Washington.” We couldn’t make any decisions right then because we were picking our grandchildren up to take them to the lake for a week and we just said we wouldn’t have time to talk and so we would talk and then I would call her with the decision.

At that point in time, by the time she got hold at the surgeon to do the lung biopsy he was on vacation and of course then he had catch up time, so from the middle of August until I had the biopsy on the 17th of September they came back with a correct, and she had picked it correctly, idiopathic pulmonary fibrosis.

They can’t attribute it to anything in the jobs that I had. I didn’t work around cellulose; I didn’t work in a green elevator; I didn’t work where they had chicken dust and chicken dander so they term it idiopathic because they don’t know what causes it.

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