Monthly Archives: April 2014

APRIL 24: Update

photo taken at Rodin Museum, June 2012

photo taken at Rodin Museum, June 2012

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.

–Caitlin

APRIL 8: And the Weather Is Nice

hen bath

A lot of people have been kind enough to ask how Caitlin is doing, and how the process is going, but like most things in life, everything takes longer than you expect. That long transplant “health maintenance” checklist I mentioned? Ticking it off leaves a lot of room for hold-ups and delays, glitches and bumps. It’s similar to putting on an addition and having the plumber hold up the plasterer, the floor guy, the painter, and everybody else. The details are not worth mentioning, but we are hoping for the listing to happen soon, and have faith that everything will happen when it’s meant to happen. Meanwhile, Caitlin’s been trying to reconnect with her friends in the city. She’s able to do a bit more as she gets used to using oxygen 24/7—she and Andrew have actually been able to go out to dinner a few times, and that has made her very happy. Also, she found a beautiful Elizabeth & James bag that seems as if it was custom-made to fit her tank and a few necessities, and carrying that makes her feel a little better about it.  Sometimes a little vanity is good for the spirits.

She stopped IV medicines last week, so regardless of the transplant stuff, she’s just trying to stay stable.

It was 67 degrees here in Boston today so that made the whole city happy, including us. Also, she’s looking forward to the new Mad Men season because she now lives for passive entertainment. She’s currently reading Primo Levi, and we are both looking forward to seeing the new Wes Anderson movie.

Oh, and big highlight of last week: giving Henry a bath.

–Maryanne