When I was diagnosed with Rheumatoid Lung in early 2004, it was the results of several months of intense testing. The doctors had me on an emotional roller coaster. They would tell me I had one disease and then after another test, I had a different one. It was only after I traveled six hours to a specialist at Vanderbilt was it confirmed that I had rheumatoid lung. And the idea of a lung transplant was out of the question as the disease would affect the new lung(s). Oh, and I was given less thn six months to live.
I decided to get a second opinion on the transplants so I contacted a specialist in Atlanta. Again, after numerous testings and two hospital stays, I was turned down. My lungs have gotten worse and are changing my way of life tremendously. My physical activities are almost nil, and I hate asking for help to do the everyday things. I understand that a lung transplant is a serious surgery but if I could even get five good years, it would be worth it.
I am often asked what I have and no one has heard of it. So when my son suggested a website dedicated to rheumatoid lung, I agreed. Maybe it will play a small part in the awareness of the disease and stop someone else from going on the same roller coaster ride I had.
Sincerely,
Loretta