Chicago Transplant Evaluation

I went back to Chicago for a post transplant evaluation. Dr. Burt said I am not doing as well as he had hoped. He no longer feels it is realistic for me to get off immune suppressant medicine. Not all of my test results are in, but my CRP (an indication of inflamation, and thus disease activity) is high. I asked what the CRP, headaches, and skin lesions mean for my prognosis. He told me I am unique, and that the form of vasculitis I have is perplexing (it looks like Polyarteritis Nodosa but has features of Temporal Arteritis, too). Basically, he doesn't know what is going to happen. He said there is still hope that I might improve based on his experience with other autoimmune disease transplant patients.

I don't know why this made me so sad--he didn't say anything I didn't already know. I suppose I thought he would be more optimistic than my doctor here. Dr. Burt's expertise is stem cell transplantation. He said he is happy to serve as a consultant, but turned over treatment of the vasculitis to Dr. Shinada (my rheumatologist at USC). I see Dr. Shinada next week, and we will plan where to go from here. There aren't any new treatment options. It is a question of whether we want to re-try things that failed in the past, to see if they are effective now after the transplant. One of my questions will be about the CRP level. I know it shows that my vasculitis is active, but what does that mean? Greater risk of aneurysm. blindness, and stroke? A need to increase the amount of Prednisone I take?

Even though the CRP is high, which is a bad sign, I don't feel worse. Before I had the transplant, the vasculitis was getting steadily worse, and I was in a lot of pain. Things have been pretty stable since the transplant. I've had two flare ups since the transplant, but haven't needed to go back into the hospital. It seems to me that the transplant has to have changed the status quo. Even if things look bleak, I am the only transplantee in the country with my form of vasculitis, so I am the trailblazer. This is a journey that I, my doctors, and everyone who loves me is on, and who knows what surprises we'll see along the way.