Wednesday, January 26, 2011
The Clock is Ticking
Lately, it's been more difficult to breath. When I was discharged from the hospital in December, I was surprised how well I was doing after I was through with the pneumonia. I'm finding out now that the secret was the high dose of prednisone I was on. I was discharged on 60mg- now I'm down to only 20mg. With each tapering down of the drug every two weeks or so, my breathing has become progressively more labored. Now, I'm using oxygen more than I was just two weeks ago. I'm becoming exhausted from doing things as simple as putting on my clothes and making my bed, things that I had difficulty doing immediately before I was transplanted back on November of '08.
It's not quite as bad as it was then, however. My weight is better then it was. Right now, I'm about 113lbs, where I was about 95lbs before the transplant. I wonder when my doctor's are going to actually mention re-transplantation...
When I was first told that I had chronic rejection, amazingly, I wasn't depressed. The biggest questions on my mind were what was I going to do with whatever time I had left, and how was the family going to react. That has always been difficult ever since it became my responsibility to break bad news concerning my health to people, watching their frightened and anxious responses, and fielding the questions. How do they treat it? Can you be re-transplanted? What are the odds that you'll get matched a second time? And the crying and worrying. It sounds like a dick thing to say, but I don't mean it to sound like Oh great! They're crying. but I, in particular, have always had a hard time knowing how to react to that, then compounding my anxiety is that I don't have anything honest to say that could ease their mind. In between it all, sometimes I feel like I don't have the time, nor the right, to be upset about it. Lately, though, I have been.
During my pneumonia I spend a lot of time listening to The Beatles' "In My Life" and regretting how I've failed to make more of my relationships. I also felt like I hadn't been brave enough in pursuing my goals. Granted, I didn't really know what those goals were. Things have become much clearer to me now, but I may not have the opportunity to do anything about it now. I can only hope.
I figure, if I am fortunate enough to be transplanted a second time, I owe it to myself to do something brave and dangerous. I don't mean physically dangerous like jumping out of an airplane or climbing the side of a sheer rock wall without a harness. I mean dangerous like go off with whatever money I may have, whatever possessions I can carry, and try to make it. I only got about 2 solid years of health of out this transplant (granted, they are two years I would not dare trade). I don't know what will happen if I get another new set of new lungs. I figure, I need to make me happy and I don't want to die not having tried. understandably, I played it safe; assuming I had more time than I did. Not again, though. Not again...
There are two things I desperately want to do if I get the opportunity to- Write a screenplay and finish my associates degree in journalism and then go on to study either biology or physics (OK, maybe three things). Plus, I need to quit worrying so much about being myself. I care about my family and their opinion, and that's normal, I'm sure; but, I can't afford to continue on like I've been. I think I've earned the right.