Cystic Fibrosis & Organ Donation Awareness – Page 12

APRIL 8: And the Weather Is Nice

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

March 18: Boston. We are waiting to start waiting

We are grateful to be back in Kitten’s Boston apartment after our long drive from PA. It turns out that there are still a bunch of small tests and procedures that have to be done before actual listing, so Caitlin is focusing on getting all that done. The restrictions of the past few months, which continue, have been tough on her, but she’s been doing an amazing job of staying positive.

March 12: Home to Wait

So Caitlin is accepted as a Tx candidate, and there is relief in that. She doesn’t have a “number” yet; there are still a couple of minor tests to do which affect the number, and in any case, the number is really “just a number.” If lungs become available that are just right for you, and the circumstances are right, you get them. It’s all fate, chance, luck, divine intervention—whatever you want to call it.

The good news is she’s stable enough, at the moment, to wait at home in Boston, so she and I and Andrew, who’s been unbelievably caring and supportive, are heading out today. She will be discharged on IV meds and oxygen, and I rented a large, comfortable SUV for us. Commercial flying still feels a bit too risky (virus season/stress). This is so welcome, because when we left Boston on the medical jet last week, we had no idea what was ahead, and did worry that we would have to stay on in Pittsburgh indefinitely. We may end up waiting back here at some point, but for now, we are taking it one day at a time.

She actually feels okay and looks like normal Caitlin ! fyi

Looking for Caitlin Updates?

“It’s part of why the idea of souls makes sense to me. This place is just like a ropes course for souls. A learning center. It never changes and the collective body of humans can never sustain their progress too too much or else there is not enough to challenge the souls. Imagine all the people living life in peace ✌️ John Lennon – well that wouldn’t really work if you believe we need to be challenged to grow.” —Caitlin O’Hara

March 8 – Pittsburgh

A quick update for all who have been so kindly inquiring. Caitlin’s here at UPMC Presby, completing the transplant evaluation. UPMC is great in many ways (the important ways). Food-wise, it’s 1950s, with meals served at 7:30, noon, and 5pm. It’s been tough trying to fatten up the kitten, but we’re figuring it all out.

We should have some transplant answers and a plan by next week. We are also hoping to get her out of the hospital, as it’s going on four weeks now, and that’s just this visit. Whether we will be able to wait at home or in Pittsburgh is still undecided.

For everyone who has asked for an address, thanks so much. But since she may be discharged soon, we would advise holding off on sending anything. The kitten always appreciates those emails and texts, though, and I’ve hung a bunch of photos from home on the wall opposite her bed.

I volunteer at the Brigham, and one thing I’ve realized is this: (Take note if you ever have to go into the hospital for something serious.) It’s important to hang up photos to 1) remember who you are, and 2) to remind the medical people that you are way, way more than your illness.