He told me that often doctors feel that with the addition of Cellcept or Azathioprine, they decide they can pull back or remove the patient from the prednisone. Big mistake! He said that if a HP person was quickly stepped down or removed from prednisone, they often go into a fast downhill slide.
I asked if I was a typical HP patient with my current numbers and damage to my lungs after having the disease since 2002. He said I was on the far side of the bell curve. That has always been my goal. When told I had limited time on this earth, my internal voice said, "Nope. There is a bell curve and I am going to be one of the few on the far side of that curve." I did it! He also confirmed that all my exercise contributed to my longer life.
We talked about the success of lung transplants. I already knew that cystic fibrosis patients have the longest survival rate but it was heartening to learn that HP patients are number two! It is probably because we do not have the fast slide downhill like the IPF patients. Interesting.
So, after reviewing everything, the plan is to have me complete the non-invasive testing. For example, kidney function, mammograms, etc. If we bump into a problem, it can be addressed before I am in crisis mode preparing for transplants. Smart. That testing should be completed within three months.
Now, the big news, he said that he would estimate that I probably won't have the numbers for qualify me for lung transplants for two to three years. Of course, my plan is to kick up the exercise and make that five to six years! We'll see if I can pull that off!
I wrote a brief history of my journey and summary of the meeting for family and friends yesterday. I thought I would add it to this post for those who are new and don't know my history: