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.
ADVENTCAzT 07: ‘If only things were different…”
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