Wednesday, May 2, 2012
I went to clinic today at Children's Hospital. They told me I'm still healthy, which I already knew. I've had no symptoms of anything or medicine changes in years. I am no longer a regular at that hospital. I didn't know any of the nursing staff. I messed up the signing in procedure at the blood lab. I didn't know what order the questions would come in from the the man at the front desk. I guess these are all good signs. I don't really want to be a regular at any hospital. Yet when I was there, it didn't feel particularly good.
The hospital has always made me nervous. I've never really gotten "good" news there. I've gotten news that I was worse. I've gotten news that I was stable. Arguably getting the heart was the best news I ever received, but at the time it didn't feel like good news. The only comfort I ever had at the stress-inducing crazymaking hospital was that I was a regular. I knew what to expect. Now even that is gone. After a day at the hospital I feel like falling over (which I did today. Naps are great!) because there is no comfort level there for me. It's bad both ways. When I went to the hospital every day I was missing life. Now that I go every three months I can't go without getting physically and emotionally lost.
I actually did get lost today, trying to leave. You have to remember, my parents explored a lot. I mostly sat in bed. I eventually found where I was going and one of the transplant doctors was waiting for the same elevator I wanted. The doctor's see me so rarely that he didn't recognize me. I've grown up a lot since I was a dying fifteen year old. He only saw me for a moment. It was still staggering. I'm just too healthy. I'm apparently a star patient, never having missed a dose of my medication and not getting drunk and high. I just thought you should know the twilight zone I live in.
I never wanted to know anything about hospitals. I never thought I would. Yet for some reason I got very proficient at navigating one particular hospital. It was almost a point of pride. Now I go there so rarely they barely know who I am. They are done with me. They are actively transitioning me to another hospital. It's bizarre. I didn't know how patients could ever leave thier pediatric transplant centers. Now I do. I don't belong there anymore. They are mostly social calls at this point. Weird.