First visit back to the hematologist since my trip to the hospital. I'm feeling better so that is one positive. Unfortunately this visit will not yield positive outlooks. As Alyson and I go through the usual exam language and banter my doctor springs a question on me for which I am wholly unprepared. Earlier I had asked what my prognosis was with this disease and the doctor had bluntly replied that I was not ready for the answer to this question. That was a ringing endorsement in itself. Well in light of recent events I guess she felt I should be told what my chances are. Granted we aren't going to get out of life alive, this sort of talk still can make your hair stand on end. Basically, patients with cardiac amyloid involvement to my degree presenting the symptoms I'm presenting have a shelf life of 6 months to 1 year. That is without a heart transplant. And of course the chances of getting a transplant is pretty much zero for amyloid patients and definitely zero for patients with any active cancer. So today the stark reality begins to set in.
However, the struggle continues and my doctor schedules me for a trip to the Mayo clinic to see if the brain trust up there can figure out a way to save my life. A couple of phone calls and we are scheduled to be there on the 9th of September.
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