cystic fibrosis – Page 2

JUNE 29 – A Few Clarifications

* The other day, I posted a #ThrowbackThursday photo of Nick and me on St. John. A few people didn’t notice the Hashtag-Throwback part. Nick and I are most definitely not on St. John.

* We can’t venture from our home base in Boston. When Caitlin gets called, we have four hours to get to Pittsburgh. This will involve contacting the list of medical jet services that we have pre-arranged. Since no single service can sit around and guarantee that a jet will be available when we call, we have to hope that one of the services on our list will be able to get to us within the allotted time.

* Once we are in Pittsburgh, if all goes well, we will be there for two to three months. (You can’t go home until you are definitely stable. And then, for the first year, she will go back to Pittsburgh for evaluations every two months.)

* You know how once you get used to something, it starts to feel normal? Well, that’s us. We are not as somber, sad, or serious as people imagine. On the contrary, almost every day has a ridiculous amount of humor in it. One of our latest pastimes is taking videos of the way Henry reacts to the word LUNCH.

* When people who haven’t seen Caitlin lately do see her, they inevitably remark on how great she looks. Now that she’s not acutely ill, she does look a lot like normal Caitlin. That’s the irony of CF, though. Unlike some diseases, the effects are mostly invisible. For more information on CF, check out http://www.cff.org.

* Caitlin has done a few needle felting sculpture projects–quite out of the blue–and she is rather good at creating the most charming little creatures! (Needle felting is the process of sculpting/interlocking wool fibers by stabbing the wool with a barbed needle.)

* Happy July, everybody. Summer! Boston is not a bad place to spend the summer, and it’s not as stifling as St. John in July.

–Maryanne

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.