Monday, January 09, 2017

Listed for lung transplant

My transplant hospital - Inova Fairfax

So, this post is a month in the making! After getting rid of half of my belongings, relocating to Arlington, VA, lots and lots of fundraising by treasured friends and supporters, and a year of tests, more tests, some tests, dieting, more dieting, a hospitalization and a big dental saga – I am FINALLY listed for a double lung transplant.

Some of the people I know who are going through the same process get kind of blue when they are listed. It is the last resort thing to do, and it’s super scary. For me, however, I felt like having a party! I celebrated with friends from Kansas that were visiting and I ate a hamburger. I was craving a totally unhealthy kind of hamburger and fries. I don’t think lung transplant is easy for anyone, and there are certainly other people (some in my pulmonary rehab group) who have issues just as rare – but I was never able to assume I’d get listed, even if I did everything right.

The anxiety I’ve lived with for the past few years was huge. After getting listed, it is as if all this tension left my body. I actually was using less oxygen for a few days, although that didn’t last. I felt so tired, and even sore from releasing all this tension. My concentration became worse than usual – and lately it hasn’t been good. You might say I was giddy.

I know a transplant isn’t a cure, and isn’t a sure thing. Too many of my close friends have passed away waiting, so I truly understand that, but at least for now, I’ve truly done everything I can do. Now, I just have to keep exercising as much as possible and eating healthy and avoiding germs. Besides that, it is just waiting. It might be another day, or another month, or another year. There is no way to know. Every time the phone rings, my stomach drops a little, even though my current lung allocation score is pretty low and the chances I’ll get a call are pretty slim just now.


As the holiday season went on, I couldn’t help but think that if I am going to live, there is another person out there, another family, for whom this past holiday season might be the last one. They likely have no idea something terrible will happen to them. It is also a little incredible to think that if I am going to live, these new lungs grew up somewhere else. They have a different family, different friends, different experiences that matter. So while I felt giddy to be given a chance, there is another side to this that is so sad. I have no idea where my lungs will come from, or who will make the decision that will give me a chance to live – and for their lungs to continue to live inside me. But while I have no idea who they are, or where they are from, or anything about them – I think of them every day. 

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