Thursday, September 28, 2006

Back on the homefront...

The first thing I did when I got home? rearranged my DVDs. Not even kidding. My mom and my Aunt Sue had redone my room--new paint, curtains, everything--while I was in the hospital, and my books and DVDs were all out of order. Since I didn't have the muscle strength or control to get down on the floor and re-arrange, I recruited my brother to do it, and when the DVDs were in order I was a lot happier. :)

I think I had Uno's take out that first night...for awhile it was what I wanted to eat, when I wanted it, but I couldn't really "go out" in public just yet, so we did a lot of take out. And I could eat whatever my stomach would handle, which, in the morning, wasn't all that much. I was still having issues with nausea in and out, but eventually we got it down so it was just in the AM, and then hardly at all, except for random times (like once in the infusion clinic).

Even thoguh I was "home" I wasn't really "home." I was at the TX clinic once a week and did pulmonary rehab at Children's three days a week from 8-noon (or 8-11 on Fridays). We did cardio, strength, flexibility stuff, and had session on goal-setting, time management and psychology stuff. I loved the stuff in the rehab gym because it was fun to watch all the other kids, especially the little ones, progress every day. Now that my lungs were working I could do all sorts of things, eventually, although I still have very tight tendons that we're still working on (yoga and pilates, baby). Working out after tx is important all the time, but especially right after, so you can boost lung capacity. Since my diaphragm had been "knicked" during surgery, it would take a bit more time for me to reach "normal" post-tx levels (which is about 70% at one year, where I am currently hovering) so I'm on a slower scale, but that's OK with me. Slow and steady wins the race.

We had to adjust med doses on and off for awhile to get maximum immunosuppression without me being subject to every bug in the universe. So that meant blood draws. We also did PFTs a lot to gauge how the lungs were doing. I also had my own FEV1 meter and PulseOx, so I could always measure those things and call if they seemed out of whack. One thing that's great about tx as opposed to CF is you have definite numbers to work with when something is wrong. In CF it's a lot more touchy-feely, like "I think something's wrong"--it can take awhile for the numbers/CXRs to catch up.

So Mom and I were doing the clinic/rehab/ and infusion clinic thing--I was getting doses of an antibiotic to combat CMV, a bug that can be a problem after transplant. I didn't have it, but my donor had, and while it doesn't cause problems for "normal" people it can be an issue if you're immuno-suppressed. So on Wednesdays after rehab we did the 2-3 hour infusion, which I usually just slept through or read a book. The nurses in the clinic are awesome, and since I have a port it was really easy to do.

This went on for eight weeks (roughly), so until the end of September. With things looking up, I tentatively scheduled my "return to work" for after Veterans' Day in November, where I would work half-days until Thanksgiving and then full-time after that. But there was a lot to do before I went back to work.

Monday, September 18, 2006

Homeward Bound

After a month of drug fixing, drug changing, and learning how to change the dressing on the sloooowly improving right arm, I was finally able to nail down a departure date from Dr. A. Friday August 4 (I believe) was the big day, and of course the media would be involved.
The morning off I was so off kilter I even threw up a few times. I had my first real bath (like my entire body got wet) since before tx, and it was amazing. Love the hot water. Getting out was a bit of a challenge since I hadn't had to use those muscles in about a month, but Mom and I managed to do it. I also put on make-up for the first time in a long time, since I was going to be photographed by the Children's photographer (Dan, who does a great job) and interviewed by Kurt Ludlow from CBS 10 TV here in Columbus.
Before I was released we met with Julie, the pharmacist, and got all my prescriptions filled from the local Kroger (they know us really well so that Julie could check them over. Karen gave us an extremely detailed schedules with all the stuff we would have to do for the first few months and we got all sorts of numbers and books and good stuff.
Around lunchtime, the Children's media team came in and we did a quick interview and took pictures of me signing my discharge papers and all that good stuff. The channel 10 team met us int he Education center where I had my interview (Kurt was really nice) and they filmed me walking out. It was a really hot, muggy day, which was a change from the manufactured coolness of the hospital.
With a hug from Karen and Dr. A (who seemed a bit reluctant to do so), I got in my mom's car and we were on our way home. Huzzah!

Wednesday, September 06, 2006

Media attention

So, in the midst of recovery and all this fun, there was also a minor media storm going on. Since I was the first double lung tx at Children's, this was media-worthy, but not until I was out of the CICU and it was sort of a 'guarantee' (if anything with tx is a guarantee) that I would make it.

It's kind of funny, because the weekend before my tx, I was in the paper, too, to bring publicity to the state's BMV donor registry, which you could now do online (DO IT RIGHT to your right (lifeline)!!!). A Dispatch reporter and photographer did a nice story, with pictures of me playing my piano (Beethoven's "Moonlight Sonata," my favorite) and a pulled quote and headshot deal. It was actually quite a nice story. But anyway.

So about a week or so after the surgery, the hospital held a press conference with Dr. A, Dr. G, "God," and my parents (they may have been more but I forget). Originally I had thought I would do it too but the day of I was a little out of whack, emotionally, so I didn't. But my parents did a good job. If you google my name you can find the articles. :)

There was print, TV and other media, and the story went all over the world! I even found it in foreign medical journals (again, courtsey of Google). It was really kind of amazing. It was also ironic--my whole life, I had tried to keep the CF as underwraps as possible. Now, the whole metro area knew, and then some, along with the tx story!! But since I had the bully pulpit given to me, I now use it to the best of my ability. (If you want a Donate Life bumper sticker/window decal for your car, email me and I'll send you one...we've got to spread the word, kids!)

Of course, the surgery was filmed, as was the press conference, and we're trying to get copies of both. The next time I would see this much media would be THE DAY I went early August.