A week ago today, I arrived in Rochester, Minnesota, to undergo my standard check-up to maintain my listing with UNOS on the liver transplant list.
Six days ago, I was told that my liver functions are doing well and that I don’t qualify for a high MELD score. This is great news, as the longer I spend with my current liver means a longer period of time until I need to undergo a major surgery. It’s also awful news, as the cirrhosis that is already in place is causing no end to some pretty significant side effects, mostly caused by portal hypertension.
Today, I cried during my one-on-one with my supervisor because of all my frustration with being too healthy to get the curative treatment for autoimmune hepatitis and primary sclerosing cholangitis, yet too sick to avoid major impacts on how well my body functions on a day to day basis.
This is my story about living, working, and being a patient with little patience.