This week I will be live in the National Kidney Registry and ready for algorithmic matching! I had my 8-tube blood draw last week. My coordinator said the West Nile virus finally came back negative and I’m 100% official even though I haven’t gotten the letter yet. I have no blackout dates for surgery so I have maximum flexibility for building a chain and since type B is on the rare side, I could get the call very soon. I was reading up on the last few years of NKR quarterly reports and the length of kidney chains has been dropping – I think because the algorithm is working so well, we just need more donors! – so I’m prepared it might only be 2 or 3 kidneys total, but that still helps, and somebody still comes off the list who wouldn’t otherwise get a live kidney. I told my boss and she was very supportive. Now I’m working on the email I’ll send family once I have a surgery date. !!!
It’s a thing to name your kidneys, as I discovered on the Facebook donor group, and I wanted to participate because I’m a sucker for that kind of thing. It took a while to come up with mine – I was leaning towards “Wheeler and Woolsey” after flirting with “Castor and Pollux,” but those were too obscure. Captain and Tennille was a last minute joking suggestion from Jonathan and I jumped on it. Then he warned me “They got divorced” but hey, mine are splitting up too! Wikipedia says they stayed friends and that Captain (Daryl Dragon) had end stage renal disease… I’ll keep him, hoping to change his outcome, and send Toni Tennille off to help someone else.
As a project while waiting for a match, I started assembling all the nicknames I could find mentioned. If yours isn’t on here, let me know!
Coordinator says “meeting went well” – I assume that means I’m in??? I think they send a real official letter but no idea how long that will take. She is getting the cryo kit shipped to her – she explained that for these tissue samples, the handling is very finicky and not something my local lab can do. Ooh, I think this is it: https://www.kidneyregistry.org/cryo-shipping.php – dry ice and everything. So I’ll see her for the draw and presumably will hear more.
I haven’t heard another peep from my coordinator but tomorrow might be the day. I have a more detailed report on the CT and I love that it says all my organs are “unremarkable.” Liver, gallbladder, pancreas, adrenal glands, stomach, bowel, mesentery (whose existence I was only vaguely aware of), bladder all unremarkable. The spleen gets to be “Normal in size and attenuation” – fancy! I do have “scattered atherosclerotic calcifications” on various vessels and arteries, which I assume isn’t too surprising at 55, although based on my bloodwork my heart disease risk is very low…
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.
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…
The transplant center has started up again and is doing 2 living donors in July, so I will go to stage 3 of testing soon. I was on the fence about maybe waiting until there’s a vaccine. I’m not depriving a particular person yet, as a non-directed donor, and since kidney recipients who get COVID are more likely to die, and the healthcare system in general is sort of in disarray, I wonder if my donation would have a bigger positive effect (longer chain, more years total life added) when things are back to normal. But who knows if that will happen, and if others are also avoiding donating for similar reasons then me being willing now might be more important. Plus, it turns out I would probably have to redo some of the tests if I waited; and 2020 is kind of a “lost year” so there would be fewer things I’d miss during recovery (no races! no museum exhibitions! no concerts! no family visits! etc.) and I might as well.
Got the call today… all transplants on hold and did I want to keep my appointments next week? I said in the interests of minimizing contact we should probably postpone, and I think that’s what the nurse coordinator was hoping to hear. So who knows when I get to resume this journey!
Some little bits of news from my last round of tests: I have mild scoliosis, which I never knew, and I need a West Nile virus retest because my results were “inconclusive.” I’m scheduled for a kidney CT and the rest of my meetings (nutritionist, nephrologist, etc) on April 9th, but I’m predicting that will all be canceled as the pandemic escalates.
I haven’t heard from the nurse coordinator officially, just through the patient portal, but it looks like my second creatinine clearance came out much better (a little hard to tell because the lab reporting looks different/uses different scales). I also do not have syphilis, and my fasting labs were fantastic, so all is looking good!