By fall of 2019, I had been with my specialist team for several years and was being seen on a monthly basis. My MELD score had crept up to over 15 (which is qualifying to be listed for transplant). When I broached the subject of getting listed, I was told to wait until it hit 18 - then we would talk again. I was getting edgy, but I thought the doctors were doing what was best for me. So when I heard in no uncertain terms that there were no plans to put me on the transplant list, I had a choice: be crushed or fight. Once again, I became my own advocate for transplant.
MELD SCORE: is calculated from lab tests for creatinine, bilirubin and INR and ranges from 6 to 40 (6 is normal, 40 is.. well, dead for all intents and purposes). It is use to predict your mortality rate for the next 3 months. It is also used to calculate how often you need to see your doctor and have labs drawn.
In October of 2019, I asked a coworker whose daughter was a doctor at the Cleveland Clinic liver transplant center to refer me to a good doctor. I set up my appointment to be evaluated. It's amazing that two doctors can have the same degree and background, yet one sees your situation as a possibility while the other an impossibility. This doctor believed I had a chance and scheduled me for the transplant evaluation.
While I was waiting to be listed for transplant, I can't count the number of times people asked when I would be listed.. as though it can just be a scheduled surgery. There is so much involved in a transplant. Before I saw the evaluation team, I had to have all of my dental work complete, have a dermatologist go over every bit of skin on my body to check for cancer, see my gynecologist... just to name a few.
In January 2020, I finally got to the evaluation... which is a full 5 days of back-to-back appointments! I had to have a caregiver with me, meet with every kind of specialist you can imagine, had MRI's, CT scans, ultrasounds, x-rays, more bloodwork than I ever dreamed a person could donate (something like 30 vials). In addition to physical criteria, you have to go through financial evaluation, behavioral health evaluation, nutritional evaluation, then a social worker helps you make a will and sign legal guardianship over to your caregiver. It's a lot! By the time it was over I was totally drained - physically and emotionally.
I was assigned a pre-transplant coordinator nurse, then had to wait. If everyone agreed that I was a good candidate, then it would go to UNOS for a board approval. After that....
APRIL 14, 2020 WAS A DAY FOR CELEBRATION!
I WAS FINALLY ON THE TRANSPLANT LIST!
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