Katy has been listed and waiting for her new heart for over a year.
Average wait for a status 1B is 80 days… 80 days!!
At times the wait has been unbearable… at times I am angry.
Mostly I am thankful…
thankful for this:
Katy had a big Cardiac appointment today and the team is still amazed with how well she is doing. Of course we would all have liked to see her gain some weight. The team basically told us to keep doing what we are doing and to expect to keep waiting.
We had to resign all the transplant paper work since it has been so long. We were reminded that although the wait is long… we still have a lot of options. One of them being the Berlin Heart. It is my hope that we are never faced with the need for the Berlin heart but options are always comforting.