I have to get up sooo early tomorrow. Ok, so it's just 6:30 am and many people get up way before that, but I am not usually one of them. I'm heading to Nashville...again. I have another appointment with my rheumatologist, the 4th in the last 6 months and I actually have another appointment scheduled that not many people know about.
Several months ago, I was made aware of a few other people with scleroderma getting lung transplants. Although I have known about it for awhile, I hadn't really considered this as an option for me since a lung transplant won't make scleroderma go away. I mentioned it to my doctor about a month ago and she seemed to think it was a possibility considering I don't yet have any other severe system issues outside of my lung function. So fast forward to tomorrow and I'm meeting a lung transplant specialist at Vanderbilt. I wouldn't be able to have the transplant there, as they don't do them for scleroderma patients. In fact, there are only 3 hospitals in the US that do, the most likely being in San Francisco. I'm just going to meet with the specialist tomorrow and she'll do a sort of pre-screening to see if I'm even a possible candidate for referral to a program.
About a week ago the tranplant specialist sent a new patient packet to me with all the information I'd need and in it there was a booklet with facts and program outlines. I read through it and came to the section that listed the qualifications to be considered for a transplant. I stopped when I read that a candidate would have a life expectancy of 18-24 months. I'm telling you, I knew this already. I know this. But there are these moments that happen, where the reality of that timeline becomes acute and almost shocking all over again. Then I realize how precious my time is.
In the past couple of weeks, at times, I've wondered if I've already lost it. I almost can't believe I'm even considering something like this again. It takes a lot of energy and there's so much emotional and mental strain. And then I think, but what if you could live to celebrate your 40th birthday? What if you could see your oldest niece turn 18? What if you were made well enough to walk around Rome one day? I suppose all the "what ifs" are worth at least the first visit tomorrow. Then, we'll see.
Hello Beth,
ReplyDeleteJust hope your visit with the lung specialist went well. I recently met with lung transplant specialists from Loyola University Medical Center in Chicago. Right now, I am "too early" to be considered a candidate, and other issues related to my scleroderma will need to be evaluated to see if I would qualify in the future. The "what ifs" are overwhelming! I will keep you in my thoughts as you explore this possibilty.