The heart transplant committee discussed my case this morning. They will list me as a status 4 which means that I need a new heart but I can wait at home. Four is the last status before hospital admission. They want me to get sicker before listing me as a status 2 and admitting me to the hospital. (Status 3 is not an option because the wait will be way too long in the hospital given my antibodies.) We will repeat tests in the spring looking closely at the cardiac index results from the right heart cath. I will be listed on the UNOS transplant list sometime in the next week after the paperwork gets processed.
Overall I feel good about this decision. I don’t want to be hospitalized so I am happy to have more time at home with Ava. But I am ready to move on with my life with a new heart so I am disappointed to be waiting another six months. There is no good answer right now. But being officially listed feels like a step forward even though being matched is a “one in a million” long shot.
They tested my antibodies again last week. My results were 87%! That is a 6% decrease from the last analysis and almost doubles the donor pool. Anything above 80% is considered “very high” so it really doesn’t do much for my wait times. (Most people have 10% or below.) But it is movement in the right direction. I need to talk to my doctor about the cause of the decrease. It’s unlikely my body chemistry changed on it’s own. My best guess is they used a different analysis protocol and were able to exclude some antibodies. They plan to do desensitization infusions before listing me as a status 2 to further decrease my antibody number. But they will wait until right before hospitalization because antibodies usually come back. Success of these infusions is not great but it is worth a shot. Every percentage point could be a possible heart match.
I hope you all have a wonderful December and holiday season. Ava and I decorated Christmas cookies last weekend. We usually use buttercream frosting and decorating tips. This year Ava went off on her own and made royal icing. They turned out SO CUTE! Especially for her first attempt. Here are just a few of the cookies she decorated.
Heart Sick 