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.


Author: kittenupdates

I am the author of CASCADE and LITTLE MATCHES: A Memoir of Grief and Light

15 thoughts on “APRIL 24: Update”

  1. Hi Caitlyn,

    The last time I saw you you were (I think) 2 years old, so you certainly don’t remember me. I’m Eileen Mooney Thibadeau’s sister, Paula.
    You were a gorgeous baby & you’ve grown to be quite a fox!

    I’m so happy that you’ve been listed, even though you’re still screaming along on the Six Flags Roller Coaster! (That alone makes me sick!).
    You have a healthy attitude, Cat, and that is huge. NEVER GIVE UP, NEVER.

    I can’t pretend to understand how trying this process is for you, but I can be someone else to talk/ vent to. ( RED ALERT: call grammar police!) Your mom will get it… Eileen’s and my mom was the Chief of Grammar Police.

    I want you to know that you are in the thoughts and prayers of (probably) a gazillion people. I started a prayer chain for you less than a week ago and it has already reached over 850 people. I’m still getting emails from people asking for your name so their prayers will be more personal. Fear not…I’m not a crazy who cruises the streets of Boston in a nun’s habit, fingering my rosary beads. I DO, however, believe in the power of prayer, and you’ve got tons of those headed your way.

    Stay positive, Chiquita. You may have heard at some point that I was born with an illness called ” Help, I’m talking and I can’t shut up!” BUT I am also a very good listener.

    I’m sure you have an awesome support group. Sometimes it helps to have someone a bit removed to vent to, or just share your thoughts. If you find yourself in that place, know that I am here, OK?

    I look forward to the day when we can meet up & share a toast to your good health!

    Hugs to your mom & dad.


  2. What an amazing person you are. An inspiration to us all. Sending so much love your way. Xoxo Thorne

    Sent from my iPhone

  3. Oh Caitlin, so much wisdom from you, you teach us all so much. We’re sending millions of positive thoughts and prayers.
    Love, Diane Phelan

    1. Diane thank you, please excuse the delay. Everyone’s kindness is so appreciated…I don’t know what I would do with out it… Hope you and Brian are well. xx

  4. Caitlin- my long lost friend. I’ve missed you & have always thought about you now & again. You are such a beautiful soul. You always made me laugh….always were such a joy to be around. You are so correct when you say to never give up….god seems to always step into play just at the right moment…you keep that smile on your face. I have you in my thoughts & prayers! Love ya!

  5. Congrats on getting listed! I am so close to being listed for a second time, it should be any day now. I had my 1st transplant in 2008 and have been in rejection for the last 2 years. Just this last December I finally decided I wanted to try again. I also just randomly started my own blog, I never thought I’d ever do anything like a blog. I’ll be praying for you. 🙂

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