So far, the “official” markings of my 10 year transplant anniversary have been good. My tests all came back beautifully from clinic, so that’s excellent news. We test not just the lungs, but all my vitamin levels, kidney function, bone density, and things like that, to make sure that the meds aren’t causing problems in other areas of my body, and I’m glad to report that they are not. So that’s fantastic.
Yesterday, I went to Lifeline of Ohio’s monthly staff meeting to talk briefly about my transplant experience. Lifeline of Ohio is my local organ procurement agency, and they’re the people that do the “grunt” work, so to speak, of organ donation, for my area of Ohio. They promote and coordinate the donation of organs, and I’ve done a lot of volunteering with them since my transplant. Normally, I connect with the communications and education people, who organize talks and volunteer opportunities, but the meeting was for everyone who works for lifeline–about 60+ people, and includes nurses and medical staff and a host of people in other areas.
I didn’t talk long–about five minutes or so–but it was great to share my story with them. They have a new person come in every month to talk about their experience and I think that’s a great idea. It shows the staff the results of all their hard work! There were a few questions after:
Do I still have CF? Yes, I do. I’m very fortunate in that I don’t have a lot of other CF problems. I don’t have diabetes, my kidneys behave, and my sinuses are good. I am pancreatically sufficient, so I don’t take enzymes and I’m not malnourished (hahaha, malnourished. Ha. Right. So far from that now.) Other people aren’t quite that lucky, but for me, my CF problems were mostly confined to my lungs. But since CF is a genetic disease, I still have it–the transplant didn’t change my genetic code. But my version (so to speak) of CF was helped enormously by the transplant.
How long was the wait and what was it like? The wait was about 40 days, give or take. It was hard to do everyday things like brush my teeth. Think about that. Brushing your teeth isn’t exactly hard. But I couldn’t do it and breathe at the same time. After, of course, totally different story.
I also talked about the advantage of having a center so close to me. In central Ohio, we’re blessed to have two lung transplant centers within a few miles of each other! If I’d had gone to Cleveland, Pittsburgh, or St. Louis (the other centers that my CF team sent people for transplant), my mom and I would’ve had to relocate, for months, leaving my dad and my two siblings (who were both still in school at the time) to fend for themselves. It wouldn’t have been pretty. It was so much easier to be twelve miles away from the center and to be able to go home right after my discharge, and not stay in an apartment or Ronald McDonald house sort of thing for months on end.
The anniversary, officially, is in about two weeks. We’ll be in Charleston the day of, and I’m so excited for that!
If you’re not an organ donor, please be one? Please please? You can find information and sign up here.