Friday, August 6, 2010
That weekend I also learned that two people I know with amyloidosis received transplants. Kathy got a new liver (she has familial amyloidosis) and Vince got a new heart. His presentation was identical to mine and I knew without a heart he probably wouldn't survive for very long. Both are now home and doing well. Of all the amyloidosis patients that need heart transplants, only 10% ultimately get one. I am so excited for them both.
Caitlin finally returned home from Europe on Tuesday. She had a wonderful time, but Barbie and I realized we are not ready to be empty-nesters.
I have never been to the Grand Canyon; this is on my bucket-list. Sunday we will leave to spend three days on the North Rim at the Grand Canyon lodge and take a mule ride down into the canyon.
I went to my 2nd annual transplant appointment and my biopsy showed 1R/1A which is mild rejection. Otherwise everything looks great. I also followed up at Stanford with Dr Schrier and Dr Arai. It is clear that my response to Revlimid is dose dependent so we will try alternating 10 and 5 mg every other day and check an Allomap blood test in 3 weeks to see if it causes worsening heart rejection. With amyloidosis, there is no one right answer for every patient. One must be flexible and take calculated risks.