Progressively Declining

Ten years ago, I could have gotten a liver transplant right away. The liver surgeons came to my parents and said that I could easily get an upgrade if we wanted to. Ironically, despite those pictures and their reassurances, I’m actually a lot sicker now than I was back then. I might look better but my numbers are significantly worse. When I was discharged that summer, I had a bilirubin of 6. Now, my bilirubin is around 19! My bile ducts are almost all constricted or cirrhotic whereas back then, most of them were ok. The difference between now and then, though, is that the MELD/PELD scoring system did not go into effect until 2002. Therefore, they used to take symptoms into account and since mine were retched, I could have gotten a liver a lot easier. There were also only two institutions (Columbia and Mount Sinai) with liver transplant programs and so there was less competition for organs. Nonetheless, we told the doctors we weren’t interested.

In retrospect, I still agree with our decision. To be honest, the last couple of weeks I have felt really lousy. I get constant headaches, I have throbbing pains in my liver, and I barely sleep. I’m constantly tired and feel weak. I’ve had a few low-grade fevers and I wouldn’t be surprised if I got sick soon and needed to be admitted. I know all this, I know how much it sucks and how it feels, and yet I’m fine with it all. Ten years ago that wasn’t the case. I didn’t really understand what it meant to be sick, how it would affect me, and what the future would bring. When I had my first colonoscopy at 10, I woke up from anesthesia and the doctor told me they had discovered I had Crohn’s disease. My first question was, “Can I still have kids?” My next was, “Can I still play basketball?” They are cute questions for a ten year old, but even four years later I didn’t quite grasp the importance of a liver transplant. And so, despite how I feel, I know that we made the right decision rejecting an upgrade.

The biggest difference, in my opinion, between then and now was the suddenness of the disease. A decade ago, I got sick out of nowhere. One day, I was running around camp with all my friends, and the next day I was in the infirmary with 102 fever. There was no warning or signs that I was getting sick and so I really couldn’t prepare for it. One day I was at camp and the next I was in the hospital. Now my liver has slowly deteriorated. Already a year ago, I started to feel a little more sick and so by the time they told me I needed a new liver, I wasn’t really surprised. I felt like crap and everyday since then I’ve gotten progressively worse. Since it’s a slower process, I’ve had time to take it all in, understand what it means, and ultimately prepare for the future. It also makes it less painful. I’ve never been one of these people who can just rip off a band-aid. I need to slowly tear away at the edges, and although it take ten times as long and might even be more painful, it gets me a lot less nervous. And so, even though the last two weeks have been pretty bad, I know its only going to get worse. Thankfully, I’m prepared for that.