So, Caitlin’s been on the transplant list exactly 2 1/2 years today. I wanted to mark that but also wanted to let everyone know that she’s been in the hospital the past few days, after experiencing a scary and unprecedented episode of respiratory distress on Friday night.
The past few months have been getting increasingly more difficult. She’s been needing more oxygen, having more difficulty gaining weight, and is in a lot of day to day pain and discomfort. But on Friday night, she was attempting to do something fun and normal: she and Andrew had tickets to a comedy show, to see Louis CK.
They were running late and it was rainy and windy and when she got out of the car, the wind caught her breath and she started “stacking breaths”—-she couldn’t get air, her O2 saturation started going down.. down.. down. It was all happening so quickly that it was hard for Andrew to understand that something serious and terrifying was happening. She expected to pass out and managed to say, “emergency.” Fortuitously, the show was at U Pitt, right next to the hospital, and Andrew was able to run to the ER and bring back help.
The stress on her body had caused her white blood cell count to jump, and her oxygen saturation had likely been in the 60% range (you never want to be below 88; healthy people are 99-100%). She was in a compromised state after the episode, and so she was admitted.
Anxiety and panic are real problems during the wait, brought on not by mental strain but by the actual physical discomfort—-your body starts to have anxiety reactions. The hospital is not a bad place to be when you’re like this and so she’s there, getting treatments and tests and some rest.
I was lucky that both Nick and Andrew happened to be here. Caitlin and I had been alone for a few weeks, and it’s so much less stressful when they are around. Nick is so great, doing all he can to take care of us, and Andrew has been such a wonderful partner to Caitlin these past years. They are very devoted to each other.
So. 2 1/2 years! Yikes. This morning Facebook reminded me that a year ago, I’d been overwhelmed by the fact that we had been waiting 1 1/2 years. I still can’t quite believe it. It’s been a life-changing time, for sure. But one with a surprising number of blessings.
The questions I get:
Q: Does the hospital give you any indication of when..?
A: No. The odds are the same on any given day. Fate decides when organs that match Caitlin’s chest size and blood type become available, BUT her “score” (which says how sick, how “in need” she is) has to be higher than any other person on the waiting list who has her chest size and blood type. The list fluctuates all the time. Caitlin has a competitive score, but if her score were high enough to be at the top of the list, she would be very sick, indeed, and we hope to avoid that.
Q: How is she holding up?
A: She’s been remarkably resilient, but it’s getting harder, no question.
Q: Is there anything I can do?
A: Just keep letting her know you’re thinking of her. She doesn’t need things, but knowing people are out there rooting for her is always a boost. It’s harder for her to reply these days, but she’s grateful for the love.
Q: Your lives must be so serious and sad?
A: Haha. This isn’t really a question I hear with words, but I do see it in people’s faces, hear it in their voices. NO! We laugh a LOT. We enjoy our days as best we can. We remember that we are still better off than most of the citizens of this world. Humor keeps us going, and that’s why it’s a shame she had to miss Louis CK.