3rd round of testing and interviews

The last hurdle before I get official word of acceptance as a donor. A long but exciting day! Yesterday I got a call that the start was moved back by an hour, but I still left at the same time so I could explore the riverside bike path. I got out my folding bike and did the full 3.7 miles round-trip, which was lovely, and had my first really good look at an osprey (and heard it call!)

I saw the transplant coordinator, the nephrologist, the independent living donor coordinator (via Zoom, all the rest were in person), and the pharmacist. They told me I’d be done by noon, in time for the kidney CT scan at 12:30, but everything ran late and I still had 2 meetings to go when they sent me to the lab for urine and blood. The phlebotomist was so good that I didn’t even feel the needle, BUT once she was done it turned out she had missed a tube so she went back into the other arm, which did hurt a little and now has a bruise.

I had to hustle to a different building for the CT scan. I’d never had one and it was a really interesting experience. They had to put an IV in where the blood draw was, which was fine, and then took me to the room with the very futuristic/Star Trek looking machine – colored lights whirring around and everything. I lay down on the sled piece which moved in and out of a giant torus, with a recorded voice telling me when to hold my breath. I had heard about and was somewhat dreading the contrast dye injection which gives a metallic taste and a warm feeling, almost like you’re peeing yourself but you’re not. What I didn’t realize was how incredibly quick that was – I didn’t even notice the taste and the warmth traveled my whole body in just a minute or so. One more sled move/breath hold and they let me go – the whole thing only took about 15 minutes!

I hadn’t had a chance to eat the sandwich I brought, and back at the transplant office I met the nutritionist and made myself super-hungry describing all the food we normally eat! We mostly just compared recipes – my cholesterol etc. #s are so good that there’s not much I need to worry about. Finally had lunch around 2pm and then more forms with the transplant coordinator. She was about to let me go, saying the next step would be to review the CT results, but just for kicks she checked and they were already uploaded! The doctor who wrote the report hadn’t put in the detail they need so she tried to track him down, since my surgeon was in the office and could maybe take a look right then. I waited and the surgeon eventually was able to stop by – I really liked him so it was nice to see him again – and we all got a look at my 3D kidney scans, which was so cool! I have two veins going to the left kidney and it’s slightly larger, so the surgeon confirmed he will take the right kidney (I’m really happy because it sounds like that correlates with better adrenal function/less fatigue).

The transplant coordinator is so confident that I’ll sail through that she’s moving ahead with the cryo sampling for the National Kidney Registry (expensive so they don’t want to do it until they’re ready, but a huge advantage because I won’t need to keep coming back for cross-match tests against prospective recipients). I won’t get officially accepted until the 3rd Monday of August when they have their formal transplant board meeting, but it’s looking really good for being listed in the NKR within a month. Then it depends on how quickly a match/chain comes together, but as an NDD with type B blood, it probably won’t be too long. Once the match is identified surgery will be within 2-3 weeks.

So exciting!

Ready for round 3

The pace is picking up! Thursday 7/30 I have my next round of tests and meetings, including the kidney CT. I have a Facebook account I resist using, but I did join the Living Donors Support Group and it’s been tremendously helpful already reading about other people’s experiences. On the good side it sounds like once I’m on the NKR list, most likely it will take only a few weeks to find a match as a B+ non-directed donor – so depending when the transplant center approves me, surgery could be as early as September!!! (not counting on it though) On the bad (but good to be prepared) side, many many donors experience serious fatigue lasting 6-9 months or longer, and many say that their heat tolerance has gone way down. Nobody regrets donating but they wish they had had a better idea going in.

The other bit of kidney news is that my transplant coordinator apologized and said she’d given me the wrong info about the voucher program – but it wasn’t just her, it’s a new program and I think the messaging was very unclear. The upshot is that you can indeed do a voucher but then you are not really a non-directed donor and an extra kidney doesn’t get released at the end – or at least not back to the transplant center? I’m still not sure I totally understand it, but I’m not going to do the voucher which would have been more complicated anyway. Nobody in my family has any history which would indicate they might need a kidney so I’m not too worried about it.

I had a very vivid nightmare last night about getting breast cancer. Sublimated anxiety perhaps. It’s such a privilege to be health enough to donate – I hope it all works out! I would be super-disappointed to be turned down now…