“Writing Is a Struggle Against Silence.” – Carlos Fuentes
There’s an urgency and necessity associated with an organ transplant; conscious decisions made by my caretakers, the liver specialist doctors, assume that the operation giving me a new liver will result in a higher survival rate than living with my current liver. Interestingly, I looked at some of my blood tests from 10 years ago and my MELD score was similar to the current values. But, 10 years of my body slowly attacking the liver has taken its toll on the organ. My body was clearly telling me and the doctors something back in October and my yearly ultrasound & MRI probably also has evidence of the destruction, even if I don’t notice it.
The time of transplant is largely dependent on the availability of cadaver donation, or in our case scheduling the live donation surgery. The timing goes from totally unknown and possibly a call at any moment, to partially known and up for discussion between Logan, her live transplant team, me, and my transplant team to determine the best and most convenient time. February 7th will be the first in-person discussion since Logan was approved. I know today that it’s April or later, because Logan and I want to finish our semester at school, and earlier than 3 years from now, because that’s too far away based on a conversation with the nurse.
And this is where I struggle. My parents and I have known since 2004 that a transplant was a real possibility.When I called them in November to say I was placed on the transplant list, their response was “Wow, that was fast and unexpected.” It was and it wasn’t. It was 9 years, one transplant evaluation, 7 months, one emergency room visit, and 7 days of preparation. And today, it’s been 2.5 months of being actively listed with almost zero chance of getting a call, while in parallel watching Logan go through the transplant evaluation and approval. There’s two weeks until our next discussion with the doctor and an unknown time to surgery. But even that is no guarantee – it’s the future.
I struggle with telling people I’m on the liver transplant list. Logan has told more of her friends and co-workers than I have. I really don’t do well explaining that I have a life-threatening condition with a remedy that will likely occur between 3 months and 36 months from now and further verbalizing what help we need now and likely in the future. Instead, I stay silent.