Go Time? Not Yet.

I saw my transplant doctor this morning. We had a good conversation about the road to transplant. There were two big topics of conversation.

First, he has been thinking about dual listing me at Mayo in Rochester in addition to my University of Minnesota listing. Mayo does a lot of transplants and I *might* have a better chance at a match. The chance is slim though. Given my antibodies, getting matched as a status 4 is a “1 in a million” chance. I don’t know if that is scientifically accurate but it’s a very long shot. So I guess if I’m listed at Mayo, I could have a 2 in a million chance…? Still not great. And may come with a bunch of travel to and appointments in Rochester. We decided to hold off for now on the dual listing. It is a little overwhelming thinking about being listed, waiting in the hospital and transplanted two hours away. We agreed we would consider it again if time is getting short.

Second, he said given all my test results we could “go anytime”. When we talk about “go” time, we are talking about being admitted to the hospital long term until a heart match is found. His best guess is 2-3 months. I meet most of the criteria for hospitalization. My cardiac index has been holding steady very slightly above the threshold and he said it’s close enough. The one criteria I don’t meet, high pressure inside the heart, can be explained by the quirkiness of my rare genetic disease. Typically the left side of the heart will fail so pressures build on the left because it pumps less than the right. Both my right and left sides are failing – which is unusual – so my pressures don’t rise since both sides are weak. He asked me if I thought I was ready for hospitalization. I answered, “I have been sick for 30 years with a very slow decline. I don’t know what’s normal or bad anymore. I just try to manage every ounce of energy each day.” We agreed to hold the “go” conversation – unless I take a dangerous downturn – until after my next round of tests in November. I am so thankful for my doctor, his critical thoughtfulness about my case, and being able to communicate honestly and clearly with each other. I am really very lucky to be his patient.

Honestly I don’t know if I will be able to say, “I’ve had enough, admit me to the hospital.” Time is so precious and I want to get every last drop of life from this heart. I don’t know what the bottom feels like so I don’t feel qualified to make that call. But I’ll go willingly with the best attitude I can muster when my doctor tells me I need to “go”. My decline has been slow and steady for 30 years so I am less worried about getting too sick and missing the window for transplant. I am more worried about going too early and missing precious time. (There is no way to know how far my new heart will take me. Average lifespan after heart transplant is 11 years. Anti-rejection drugs significantly increase my chances for cancer, cardiovascular disease, kidney disease, and other illnesses so the clock is metaphorically ticking as soon as I get my new heart.)

While we had some big conversations today, we are still unsure how I will get to transplant. But I know I have the next three months before my next tests (cardiopulmonary stress test, echo-cardiogram, and right heart cath) and deciding if it’s time to “go”. For some reason I feel closer to transplant after the appointment today. Thank you for joining me on this journey. If I could ask for anything right now, it would be wisdom to know when it’s time and peace in my heart when that moment comes.