In thiscolumn for the Cystic Fibrosis Lifestyle Foundation, Caitlin talks about how the word “transplant” always terrified her.
It terrified me, too.
But that’s for another day. Right now, at 8:47pm on Monday, July 13, as I write this, there’s a rainbow over Pittsburgh, and Caitlin’s on the balcony with it.
It is Caitlin here. I wasn’t planning on writing on this blog but why not? “I’m not a blog person,” I said. Well…who is? Who cares? Why spend any time proclaiming what you are or are not, and what you don’t like? There is value in that kind of thing, I know, for humor…but right now all I can think about is everyone I love and everything I want to do. I am so grateful for all my friends and family, for Andrew, and for my parents who continue to do anything they can for me.
So..I got listed today! I got my “score” which is 44. 44.2196 actually. It is a higher score than anyone expected — everyone thought I’d be somewhere in the 30’s. 70’s is about the highest usually. It is based on how sick you are, and you technically want it to be higher so you can get transplant sooner. It still doesn’t mean much though, and I could get called at anytime, or I could wait; there is really no way to know. When there are lungs available, the calls are initially made based only on height/size and blood type. If those match up then the score comes into play, and the sickest person gets the call, and so on and so forth. That is a very simplified way of describing it. For lungs it is not a matter of having a set number in line and just waiting. Your score can change too, if you get sicker, to increase your odds of getting a transplant sooner. (All of this came in to play around 2005 when the regular wait list method wasn’t working for lungs anymore.) After getting the call, I could go to Pitt and it could still be a false alarm. This happens a lot. Once they get to see the lungs in person they may decide that they aren’t a good enough fit, and I come home to wait again.
I read something today somewhere, something that described transplant and waiting. I don’t even know where I read it, 1 out of the 100 things I can get carried away clicking and reading. It said, “The ride of the wait is like a Six Flags Roller Coaster. Attitude will get you through most of the tough times. Believe in yourself and your inner strength to survive and NEVER give up.”
Believe me, these words aren’t complex, I know, but they jumped out of the page, a simple emphasis at the end of paragraphs of dry informative material. No amount of rational thinking in the world can do for you what this basic instruction can, whoever wrote this knew that, and got right down to the heart of the matter. There is no escaping that this is a risk, and we are all taking the leap – the surgeons, my family, me. And all of it manifests because someone else has to die. There is something inescapably raw about it. And at the core of it, once you have educated yourself, tried your best, and hoped the science will all work out, all you can really count on is…never giving up.
9 Lives Notes 