I wrote this just after we went to Lahey last spring for a two-day session on what a liver transplant would entail. When we initially found out that Derek was approved to be on the list, but wouldn’t be listed, we put this blog and this post on hold. -Logan
We knew it would be a long day based on the schedule we were given, but I don’t think any of us were prepared to be so tired at the end of it. I just kept thinking how relieved I was that we were doing all of this when Derek was feeling good. We were initially told that we would be the only family going to what I refer to as: Liver Camp. We filed into a conference room with absurdly high ceilings and took a seat behind a table. Two nurses presented Derek with a 3-ring binder of information and had him sign many papers indicating that he understood what he was being told and that he would understand what they were about to tell him. Once he finished signing a variety of slips, the social worker began his presentation, starting with diseases of the liver.
Derek’s disease is not a result of any action on his part. Primary sclerosing cholangitis is a rare-ish type of auto-immune disease that attacks the bile ducts on an intrahepatic (inside the liver) and extrahepatic (outside the liver) level. Essentially, as the disease progresses, the liver fails because bile and toxins can’t get filtered through any longer and everything starts to back up. Because his disease is rare, and this class is for everyone preparing for a liver transplant, they covered the most common diseases of the liver. Things like Hep-A, B & C, Alcoholic Fatty Liver, Non-Alcoholic Fatty Liver. Then they showed photos of a healthy liver and asked why it seems healthy/looks healthy. Then they put up a picture of liver that was most certainly not healthy and I felt like I might need to throw up.
All through the experience I took notes. I took notes like you do on the first day of a class that you’re super excited to be in but feel like you’re not smart enough for. I took notes so I wouldn’t curl into a ball and start sobbing in the corner. They threatened to give us a quiz, and I begged them to just so I could prove I was paying attention. They didn’t. At some point, early on in the presentation, a very sick looking man was wheeled in to the room. He didn’t speak english and apparently his family was having a hard time finding the hospital. While Derek and I sat close to each other, my hand occasionally touching his arm, his parents just to our right, this poor, sick man was alone with only an interpreter. I wasn’t kidding about not being smart enough to process all the information they were presenting, and yet we were still listening in our preferred language and we were healthy. About 10 minutes into it he asked to leave; he said he felt sick and dizzy. Derek asked me if I thought he was lying just so he could get out of there and I said I wouldn’t blame him. His family eventually arrived; about five people. They listened politely to the interpreter and nodded when the social worker spoke to them or asked them questions. My heart hurt for them. I reminded myself again that as hard as it was to acknowledge that a transplant was near, at least Derek felt good, and that was lucky for us.