I went to my liver specialist’s office today for a doctor’s appointment. Now, in the last several years, I haven’t made an appointment with my doctor. Why you ask? Because I see him, already, about one to two times a year when I get sick and am in the hospital, and we keep in semi-regular contact. However, I had to go to update all my records, because (surprise surprise) the medical clinics of KU and the hospital records don’t share information. Sounds so stupid, I can’t even imagine.
The appointment went well (since, obviously, I wasn’t sick). Anyway, towards the end of the appointment my doctor casually mentioned that I’m one of the oldest patients in the United States with my illness (biliary atresia), still with my own liver (although, I suppose once you have a transplant, you don’t really have biliary atresia anymore, just a transplanted liver). I didn’t think much of that statement at the time, but the more I thought about the words, the more I realized how heavy a statement it actually was. It means, obviously, I should have passed away by now. It means, maybe they don’t know exactly why I’m alive. It means, probably, things are going to get really hard soon. It’s a pretty lonely feeling also; to know that there are almost no people on this earth who know what it feels like to have struggled through life this way.
Anyway, I didn’t mean to make this into a pity party for Megh–but more the importance and weight of every word we say. Maybe I’ll have more to add later.