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.

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