Back Story

 

Caitlin was listed for transplant on April 24, 2014.

While she was finishing all the transplant evaluation procedures, I wrote the following  “back story:”

The thing with CF lung infections is this: every time you get “better,” you’re usually a little bit worse than you were before. Once lung tissue is damaged, that’s it—it no longer works.

Even people very close to Caitlin haven’t realized, through the years, just how much she’s had to put up with. It’s easy to see only the beautiful young woman who presents so confidently and well on the outside. Stoic that she is, she’s kept most of the details of the CF struggle to herself.

She was really sick when she was 11—a lobe ravaged by a stealthy mycobacteria. She lost part of her left lung to surgery and we spent months in Children’s. She had a bit of an easier time until her college years, when she went from being able to run for miles to having to settle for simple walking, and then, over time, to having to move at her own, slow pace — and she is rarely comfortable. She’s gone from being able to climb stairs to having to move to an apartment with an elevator. The last couple of years, she’s been living with daily undiagnosable aching that is so miserable she lives on Tylenol every four hours.

She never feels well anymore, despite how cheery her texts and emails can sound. Her good days, for us, would be about a 2 on a scale of 1 to 10.

Recently she reached a point where she was no longer stable off of medical care. For three months now, she’s been on oxygen and IV medicines.  She is dealing with CO2 retention and other complications of severe lung disease like pulmonary hypertension.  So it is at this point, when everything has progressed to such a level that her quality of life is no longer tolerable, that we move to the next step: lung transplantation.

It will likely be a long wait. Basically, you need a lot of supplemental oxygen to be high on the list, and Caitlin’s O2 needs are not yet very high.

Transplant is essentially exchanging one set of problems for another set (pneumonia, rejection), but these problems can, with advances in medicine, be managed.  And the trade-off can be incredible. Transplant can be a wonderful thing, and we are very grateful we live in an age when it is an option.  Here is a link to transplant success stories from UPMC:  http://tinyurl.com/lh8pgjz

And here is Caitlin, age 2, just diagnosed (literally, on her birthday) and fascinated by the moon:

–Maryanne (mom to those who don’t know) March, 2014

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