OCTOBER 24–Kitten Admitten

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Louis CK

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.

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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.

–Maryanne

13 thoughts on “OCTOBER 24–Kitten Admitten

  1. Porter, Bill

    Maryanne,

    My family’s prayers are with you and thanks to you and Caitlin
    for sharing this trial. By giving CF a face, you and particularly Caitlin, has made it personal for us. We hope our participation
    in raising awareness can help. (Even if it is just stuffing envelopes and editing addresses in Dublin, Maureen’s Social Service while at school there).

    If there is anything we can do to support the Ohara family let us know.

    Stay positive,

    Third,
    ( Bill Porter)

    Reply
  2. Noreen

    Caitlin is always in my thoughts and prayers. She is an inspiration to us all. So proud she is my niece. Hugs and kisses to you all. Love you xxx

    Reply
  3. Thorne Conley

    I can’t find the words.. Everyday I’m sending more love and positive thoughts… I feel like it isn’t enough but believe me I’m there! All the time. Xoxo

    Sent from my iPhone

    >

    Reply
  4. juneymoon76

    God bless you all, Maryanne. Caitlin is such an admirable young woman – truly a source of inspiration. I started a prayer chain for Cait two years ago and provide updates to all involved.

    I’m still fighting for Prouty Garden. (Some architect, whose name I can’t recall, submitted a brilliant plan yesterday that would leave the Garden intact!)

    You all remain in my thoughts and prayers.

    Love, Paula

    Sent from my iPad

    >

    Reply
  5. frank brilliant

    Caitlin, Maryanne and Nick

    Your story is so incredibly powerful and it grounds us all on what he important things are in life like friends, family, love, trust and goodwill.

    Thinking of you every day

    Peace

    Frank

    Reply
  6. Nancy Barton

    Maryanne, Nick and Caitlin
    We wish you continued strength. We are always thinking of you and sending love!

    Nancy & Pat Barton

    Reply
  7. Eileen Murphy

    So many things we would like to say to you all. We think of you daily and send our love, hope, positive thoughts and prayers.

    Eileen & Padraig xxxx

    Reply
  8. Linda Shahood

    Sending big love and hugs to you. Caitlyn is such an amazing girl yes she is an inspiration to us all. Thinking of you often with so much love.

    Reply

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