Surgery date: 12/9/2020

I have a surgery date: 12/9 (day after my birthday)!

Yesterday I posted a bunch of questions to Garet Hil, the NKR founder, about the waitlist, non-directed donation, etc. They were requesting comments on the Youtube video of his keynote for the virtual National Kidney Donation Organization conference last week – supposedly they are going to answer questions tomorrow, but weirdly the comments are gone now? Then this morning I talked to the transplant social worker about the possibility of donating directly to the local deceased donor wait list, and which NKR-like protections I could still get – basically none, but she was going to ask whether I could at least request a recipient on Medicare, which covers complications properly, versus private insurance which can cut off. A few hours later my coordinator called about a match email which basically sends me back to the local waitlist without a chain, but with full NKR protections. So it’s a little disappointing not to be part of a chain, but very exciting because:

  • I’m directly helping someone who doesn’t have a living donor match (awesome for them if it works, because living kidneys last way longer)
  • It’s someone local, which feels good
  • Because we’re in a COVID sane area, I’m at least a little more confident my recipient won’t get it… no guarantees of course as we enter the next phase, but still!
  • If/when my recipient agreed to get in touch, it would be easier to meet them
  • Most of all right now, no more waiting for a call, and plenty of time to plan!

I’m going to wait to tell family until about 3 weeks out, which is probably when I would have heard under normal circumstances. Whew! Poor Jonathan’s reaction was “Oh no…” (because of the timing) but he is still very supportive. It will have been a year and a day since I started this process, and I’m so excited to be done during 2020! Fingers crossed nothing goes wrong!

In limbo/on tenterhooks

I went live in the NKR on September 4th and kept expecting a call quickly, but not a peep (which means there wasn’t anyone in the pool who’d been waiting for a kidney like mine, so already I was a teensy bit disappointed). On September 27th there was a offer which needed a specific surgery date, and they turned down the alternate dates my center could offer – so I had a few hours of thinking it was a go. That would only have been a 2-kidney chain, mine and one other. Then on October 6th my coordinator called to have me talk to the surgeon. He felt that recipient surgeons might think my right kidney is problematic because even though it has a single artery, the vein isn’t clear and there might be more than one, so he suggested switching the offer to the left. The coordinator called me back later that evening to say a new match had just come up, for a donor pair that had just been entered in the NKR minutes before. It would have been a 3-kidney chain but it was cancelled first thing the next day. Nothing since.

The waiting in the queue has been really, really hard for me, much more so than the 9 months that got me here; I think because there are no other tasks or hoops to jump through! I am active in the NKR through 12/8. I am willing to donate directly to the deceased donor waitlist locally if need be but I’d hate to give up the NKR protections. I’ll ask for a conversation with my coordinator next week. You would think the NKR wouldn’t want a healthy kidney to “age out” of the pool without an offer and would cover sending me to the waitlist if there’s no match… and I still have 7 weeks to go, so there’s still time.