Dyane describes how testing and treatments at a pulmonary fibrosis foundation Center of Excellence has proved beneficial.
When I went to National Jewish Health in Denver I wasn’t sure exactly what I was looking for. I knew I just wanted a better understanding of my disease and I was hoping to find that it was part of a connective tissue problem that I believe I’d had my whole life.
I went through three days of very intense testing. They did a high resolution CAT scan. They did pulmonary function tests. They did arterial blood gases. They did a six-minute walk with oxygen. They verified how much oxygen I needed. I went through some pulmonary rehab and I saw a Dr. Solomon and another doctor whose name escapes me at the moment; he was a rheumatologist.
They took 20-some odd vials of blood, more for me because I am also part of a genetic study that’s being done by the doctors there, and throughout all this I talked to the doctor at the end of the week and I learned that A, I had a strong connective tissue disease, rheumatoid arthritis-type inflammatory disease going on, which probably is what caused the original scarring in my lungs.
I had a massive autoimmune response to something that we don’t know that kicked it off. I was stable for almost five years and because of that, they believe that by using prednisone and a drug called aziaprine, which is an immunosuppressant that they can stop my body from attacking my lungs and hopefully stabilize me and I can continue on like I am doing for a long time.
People with NSIP generally, I have seen a paper where it says they generally can live up to ten years or longer, and like I said, I am going on my eighth year now.
It gave me more hope that we can stabilize me. It was very informative as far as what exactly is going on inside my lungs, as much as they could tell me without a biopsy. They don’t want to put me through a biopsy because it would be too hard on me and the original biopsy that they did when I was sick eight years ago was only at the beginning of the disease.
They want to continue with my care. In six months I can either have the same tests done here or I can go back to National Jewish and I would love to.
They gave me, they don’t sugarcoat anything, but they told me exactly what I needed to know to have hope that I can continue on with this disease. The problem with pulmonary fibrosis is we don’t have survivors. We don’t have famous people who have survived this disease like breast cancer or some of the other muscular dystrophy or things like that.
All the famous people that have had pulmonary fibrosis died. Evil Knievel, James Doohan who played Scotty on Start Trek all had pulmonary fibrosis before they died and even a lung transplant is not really a cure because unfortunately, your new lungs can get it.
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