Full disclosure: I’m 24 years old, I’m married, and I need a new liver. Those three facts sum up my condition the best. First, I’m only 24 years old and have the body of an eighty year old. I should be going out every night, hanging out with friends, and all that crap. Instead, I try to get to sleep before 11 so I’m not sick the next day. Second, my wife is amazing. She is the only reason I can get through this. Not only is she a nurse and can take care of me, but she’s funny, smart, and cute. I don’t know how I got so lucky there.
Third, and this is what this blog is about, I need a new liver. Around 13 years ago, I was first diagnosed with Crohn’s disease, an autoimmune disease that affects the small and large intestine. It was a great early Bar Mitzvah gift. Around a year later, after some routine blood work, I was diagnosed with Primary Schlerosing Cholangitis (PSC for now on). PSC is also an autoimmune that slowly kills your liver. Needless to say it was a great couple of years. When I was first diagnosed with the disease, no one was particularly worried about it. But shortly thereafter, I had my first bout of cholangitis, an infection that hits the bile ducts. Since there is no real cure for PSC, the definitive treatment is a liver transplant and that’s what the doctors wanted to do. I was weak, had a horrible rash all over my body, and was only freaking 14 years old. Clearly, I was not prepared for this. Thank God, I had an amazing doctor, a GI literally sent from heaven that saved me. He refused to believe I needed a transplant and against the pushing and prodding of surgeons and liver specialists, wouldn’t change his opinion. Thankfully, he was correct. I’ve been relatively healthy for 10 years, only occasionally needing to go to the hospital for minor cholangitis flair-ups.
With a body that keeps attacking your liver, 10 years is a long time and in the last couple of months I’ve gotten particularly worse. In December of last year, I was back at the hospital with another case of cholangitis. After several tests, my doctors all agreed that the only course of action left was a liver transplant. And that’s where I am now, on the long list of those waiting to get a new liver.