At the last ILD meeting, my HP friend Marty was there with his daughter who was visiting from Austria. I had not seen him since his big downturn during a Hawaiian vacation. After seeing a new doctor, he ordered tests which did not reveal what caused the drastic deterioration of his health. I learned after the meeting that his doctor had come to the conclusion that he probably should never have been totally taken off of prednisone. They think that it what caused his lungs not to have the support they needed for flying and that they were weakened before he left on his trip.
No more prednisone. Wouldn't that feel fantastic? I realized many years ago that it was not going to be in my future. I tried so hard to get Dr. K. to keep reducing the dosage with the goal being none. Zero. It was then that realized that I was on it for life. Forever. She broke it to me gently.
As I twitch and wiggle with 40mgs of prednisone invading my body right now, I guess I need to be hopeful that it will calm down my lungs and increase my DLCO. I would love to be off of supplemental oxygen once again...
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