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!

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