Talking to my doctor about kidney donation

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.

First steps on the journey

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!