Almost listed

So, I’m ALMOST on the transplant list.

The committee decided that I’m a good candidate for lung transplant, and they’re ready to list me. Buuut there’s one last hold up. For about 2 weeks now we’ve been trying to get authorization for Clofazamine, one of the antibiotics I’ll be taking to treat the mycobacterium. I’ll need to continue mycobacterium treatment post-transplant to prevent infection in the new lungs, and they need to determine whether I can tolerate Clofazamine or if they’ll have to find a different medication. So I won’t be listed until the stupid authorization comes through and I have a few days of Clofazamine in me. But once that happens, it’s on like Donkey Kong!

My health has definitely deteriorated during the last 3 weeks. They already gave me a Lung Allocation Score (LAS), which determines your placement on the transplant list, but they plan to redo some of my testing and the expected lower scores will bump me a little higher. If I continue deteriorating my LAS will keep going up, which means less time waiting for transplant. The expected wait time they initially told me of 3-4 months is now down to 2-3 months, and could get shorter. Basically, I should be sporting shiny new lungs for the summer. Talk about getting your beach body ready!

One of my nurses said if you’re getting a transplant anyway, it’s actually better to be relatively healthy and then suddenly get very sick very quickly. If you deteriorate gradually over time, you’re more likely to lose weight and muscle tone, both of which are important for recovery. Getting sick and getting transplanted quickly means your body is more likely to be stronger and more able to cope with the rigors of transplant. So apparently I’m doing this exactly right. Go me!

One big bummer is it looks like I won’t be discharged before Pesach. I started an experimental IV antibiotic on Wednesday (how cool am I?), and unfortunately it seems to be difficult to get, even more difficult to send home, and nearly impossible to ship out of state. They want me on it for 2 weeks, so unless they pull together a miracle I’ll probably be having my sedarim in the hospital. I’m really not thrilled about that, but it does fit with my current trend of hospitaling my way through the Jewish calendar. My rabbi pointed out that I should probably expect to have the transplant on Shavuos. He’s probably right!!

Aside from that it’s status quo around here. Please send red-tape cutting thoughts my way so I can finally get on the Clofazamine and get this show on the road!