Since I was in the hospital more frequently I had gotten to know the staff fairly well and it wasn't unusual for them to stop by the room to chat. On one such visit we were just playing with their pulse ox machine. I was laying in bed and my SAT's were normal I happened to get up to walk to the door and then my SAT's were in the low 80's. At the time this didn't mean much to me but my doctor seemed to be quite interested in this. Then numerous test were run with no definite result. I was then sent to a research hospital and had even more test done. It was there that a name was finally given to my condition.
I had IPF, idiopathic pulmonary fibrosis, and the prognosis wasn't going to be good. I could see that my doctor was worried however surprisingly I was somewhat relieved, I had finally been given a name for my illness and I wasn't crazy after all and there really was a reason that I had been feeling the way I had. I was right and the doctors had been wrong.
I think in many ways this gave me more hope....I mean if the doctors had been so wrong in my diagnosis then maybe they were just as wrong in their news of the prognosis??? This gave me hope. They told me that I would have about 5 years left to live unless I had a successful lung transplant. I was approved for such a transplant but for personal reasons decided not to go this route.
Now that was nearly 9* years ago and I have tried many drugs some that were even experimental and that are now on the market for others to use. Many treatments didn't prove to be of any benefit but others have bought me some time and for that I am grateful.
If there has been anything I have learned through all of this is that IPF like many chronic conditions it is more a disease of attitude and not a disease where one follows a medical books map for it's future course. Doctors can give you information but it's up to you to choose how to use this information. Even the BEST doctors out there can't predict the future and it's up to me to determine what my future life with this disease shall be. I personally, plan to stick around a bit longer.
Now don't get me wrong -- it hasn't been the easiest journey of ones life but I don't think I would change a thing if I could. I mean I have met some great people and had a good life with experiences I may not have experienced if I hadn't been given the news that I had IPF. So to those just given the death sentence of having IPF - remember everyone is going to die at some point, now you know why you have been feeling so ill for so long. That's all!
You are no different than you were yesterday before they gave it a name so don't let the name kill you. You still have a life to live as you choose to live it. It is up to you!
*Editor's Note: This
page was first published in 1998. Add an additional year to her
diagnosis for each succeeding one. "Buckwheat" is still
fighting her battle with IPF in 2005.