Hilary's Kidney Donation and One-Kidney Marathon Blog

Today is the day for my kidney donor orientation! 10:30am – 3:30pm, “bring a snack” (for me, not them, I assume :*) No tests except maybe a little blood, just a lot of meeting and talking. I also reached out to two donor mentors, one from Kidney Donor Athletes and one from Living Donors Online. The latter was the only one I could find who donated at this same (small) transplant center and I talked to him on the phone Saturday. I really clicked with him – similar age as me, similar attitude to fitness and medicine (and he’s an ER doctor, so extra-reassuring). Both were very encouraging.

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I got there early enough to go for a walk along the Connecticut river and see a pair of mergansers and a bald eagle! The transplant office is a large suite in a big medical building. They are remodeling and there was construction going on, but it was really empty (I was the only client at first). Everyone was super-nice. First I met with the main nurse coordinator who set me up with a 30mn video. It was a little outdated and I had a couple of critiques of it, but not too bad. Then I talked to an assistant nurse coordinator, who gave me a giant binder full of all kinds of information and a very helpful checklist of every step between now and actual donation. She also spoke really highly of the surgeon I’m assigned to, saying he was incredibly skilled and amazing to watch. The independent living donor representative assigned to me came in next, and then a financial adviser who mostly talked about insurance details (since I don’t have a recipient yet and the recipient’s insurance is supposed to cover everything, it was mostly speculation). They had told me to bring a snack, so when I’d been left alone for a while I got out my PBJ and started eating – glad I did because it was a long break and the nice receptionist offered snacks I didn’t want. My favorite person of the day was the social worker, but she was a fill-in who normally works in the ER and was very happy to see that I already have a health care proxy on file. She gets people all the time who  need them but it’s too late to fill one out when the time to use it has arrived! Then I met the surgeon, who  seemed great. His patients mostly go home after just 1 night in the hospital and don’t need any IV opiates, and his last patient didn’t even take any by mouth. He makes a quite small incision because he does full laparoscopic vs. hand-assisted, and it’s between muscle fibers so should heal quickly. He looked at my existing giant scar from my previous surgeries and he might use the same one, but is more likely to go a little higher. The one main concern he had was when I raised the topic of adhesions I’ve gotten in previous surgeries, which periodically/infrequently cause me some abdominal pain which resolves through motion (especially car rides). He wants to look at the surgical notes from my last operation in 2002. Finally I met with the primary nurse coordinator again about the next steps – basically lots more tests, but they try to clump them up. I was there more than 5 hours – next time I’ll see if I can take a walk in the middle, because it was a lot of sitting.

Subsequently I heard back that my GFR, which the surgeon was fine with, came back borderline according to National Kidney Registry guidelines (83 and they want 85). I would need a nuclear scan to confirm, but because of the trouble I had with a migraine on the day I did the 24-hour clearance, I’ll just do it again. If it comes out just slightly better I’ll be fine. I also need to make an appointment with their psychiatrist, which they require of all non-directed donors. All part of the kidney adventure!

I got an email early morning Monday from National Kidney Registry that they had the test results and the next step was to choose a transplant center, who will review the results. I assume if the outcome was clearly negative (my serum albumin was slightly high) they’d have ruled me out? Anyway, I then had to choose a transplant center. The one closest to us, at Baystate in Springfield, has the Family Voucher program but not the full Donor Shield program so I hesitated at first – and NKR has a helpful warning that you can’t change your center after you choose it – but I have plenty of opportunities to ask questions and change my mind despite that, so I took the plunge. Got a phone call that same day from the nurse coordinator who seemed very nice. First thing is a day-long informational orientation where you meet with the surgeon, psychiatrist etc. w/o any medical testing, always on a Tuesday at 10am (worst day for me because there are standing meetings, but I’ll make it work). I’ll get a call probably Thursday to make the appointment. If they have an opening 1/21, that’s what I’ll pick. !!!

Doing the collection itself wasn’t so bad – bit of a pain to trek back and forth to the fridge overnight – but I got a horrible migraine, probably triggered by caffeine withdrawal. I spent yesterday afternoon vomiting, ate nothing, and went to bed at 8. I wonder if it was 100% necessary to follow the directions to the letter… The wording says “Diuretics cause your body to pass more urine than normal,” but if I drink 1-2 cups of coffee every morning, isn’t that my normal? Anyway, I’m glad we don’t celebrate Christmas because the day was a wash. The Quest Diagnostics appointment this morning went smoothly – another urine sample and 3 tubes of blood. I told the technician I was glad it wasn’t the 17 tubes that other donors talk about, at least not yet! Fingers crossed the dehydration etc. (4 pounds lost in 1 day – I should have pushed liquids harder) doesn’t mess up the results. I don’t know how quickly the results come back – a week or two? Progress on the journey at least!

The jug took more than a week to arrive. I have to avoid coffee, tea, and chocolate – decaf and not – for a full day before as well as during the collection, and also no running. Bummer on both, but it’s only 48 hours. I’ve made the appointment to turn in jug/get bloodwork Thursday, so probably I’ll hear from the transplant center a week or two later? Fingers crossed my numbers will be good!

I got the link to the medical history and filled it out – only took about 15 minutes but it seemed very thorough. Then, to my surprise, the next step is immediate: NKR will mail me a urine collection jug for the 24-hour test. I have a month to set up an appointment with Quest Diagnostics, do the collection, and bring it in/do a blood test That’s kind of cool, not having to go through the hospital yet! If I pass this screening then they put me in touch with the transplant center. I’ll probably aim for the end of the month when I have time off. I will use work sick time for testing starting in January.

I turned 55 today and I just filled out the National Kidney Registry interest form! First you put in your basic contact info and get an email verification; then there are a handful of health questions (height, weight, ever had various diseases) and whether you are donating for someone you know or Good Samaritan/non-directed. Next step is to get an email letting me know if I passed the screening (no reason it would be anything but yes) and giving me a complete medical history to fill out. They estimate about a day to get the link and an hour to fill it out.

For my birthday I asked Jonathan for an official certificate that he was willing I should do this. As usual he went above and beyond with an amazing document (complete with clip-art kidney giving a thumbs-up) that says I have his “encouragement, endorsement, blessing, and 100% support.” I love it—and him—so much!

My primary care physician was encouraging, in a very matter-of-fact way (which was extra-reassuring). She has two patients who’ve donated kidneys and at least one who was born with just one kidney. She confirmed that the risk is low, that you really only need one, and that “someone will really appreciate it.” Jonathan and I had another talk today and he’s on board. We strategized when to tell family, which is what he’s most worried about – not unless/until I pass all the screenings and get an actual surgery date. Friends I won’t tell until after the surgery, if I get that far.

If you’ve gotten your DNA sequenced, you might be interested in Promethease, which is now free through the end of 2019. It compiles a zillion traits from SNPedia in a nice format. I searched on “kidney” and the variants that came up for me are primarily postiive: rs1711437(A;G) correlated with “younger, healthier kidney function”, rs6495446(C;T) – “0.8x reduced risk for chronic kidney disease.” I take that with a generous side of rock salt, but hey, it sounds good!

Next kidney stop: filling out the National Kidney Registry form on my birthday.

Written after talking to Jonathan at length, in preparation for asking my primary care physical about kidney donation

I’ve been aware of kidney donation for a long time but didn’t start really seriously thinking about it until reading Dylan Matthew’s story. Donating whatever can be used after my death always seemed like a no-brainer. I was a timid child, afraid of pain but wanting to be brave, and I admired my dad’s regular blood donation so much. I got physically braver as I aged and started donating blood myself in the 90s – I’m nearing 10 gallons by now! In 2008 I volunteered with a young man who told me his story of donating bone marrow, which he described as one of the highlights of his life. I researched it and signed up with Be the Match, but I’ve never been called.

I remember thinking “oh, I could never do that” about kidney donation when I first heard about it. But so much has changed about the donation process, and I’ve also undergone multiple similar surgeries so it’s less scary to me (I had 3 operations for endometriosis, 2 full incisions and one laparoscopic).

• Nephrectomy is typically laparoscopic now and most people go home after 1-2 days and are back at a desk job in a few weeks.
• I would never want to individually choose a stranger to give to. The growing number of non-directed donors has normalized that choice (I read the Larissa McFarquar article when it came out in 2009 and it made the donors seem kind of weird).
• Kidney chains, especially ones that are separate in time and space (as opposed to the simultaneous surgeries like in the Grey’s Anatomy episode) have revolutionized what one donation can do.
• This is really new and I had already made my decision before I heard about it: now you can give family members who might need a kidney in the future a priority voucher. We don’t have kids and nobody has kidney disease in our families, so this is a nice extra for me, but if I had been on the fence this would have a been a huge relief that I wouldn’t need to “save” my kidney for someone who might need it.
• I have a job with great sick leave and live very close to a transplant center, but now time off and transportation costs are covered for most people.
• NKR offers various kinds of insurance too.

Psychologically, I’m drawn to kidney donation because it’s a way to do something clearly good in the world. This is a way of giving back in gratitude for my ridiculously-good health. I’m lucky to know I’ll probably handle the surgery well: I don’t get particularly anxious, I’m fit, and I’ve healed quickly in the past and know what my body needs. Plus it’s a new adventure/a big accomplishment if I succeed! It’s a challenge on the scale of running a marathon (I’ve done 3) but it will benefit other people and not just me.

I have done so, so much research on this – that’s my way when approaching a new challenge. There are a lot of first-person accounts out there now, luckily. My current favorite site is Kidney Donor Athletes. I hope I get to send them an article next year!