Meet Kidney Donor Athlete, Hilary!

I donated my left kidney to a stranger, who’s now a friend, in December 2020 – the day after my 56th birthday. It’s one of the best things I’ve ever done! I was back to completely normal in a remarkably short period of time and I’m looking forward to running my fourth marathon this fall.

 

It was a long journey to this point. I was terrified of pain when I was a kid. It blew my mind that my dad was a regular blood donor; he was an inspiration to me anyway, but that was extra-admirable. I was also very un-athletic, always picked last for team sports. As a teen, I rode my bike a lot but I also discovered that I faint in response to blood or injury (vasovagal response). In my late 20s, I started donating blood myself, which helped with the fainting – I still need to stay lying down longer than most people, partly because I have low blood pressure – and made me feel both brave and so happy to be helping. 

In my mid-30s, I started running. My first 5K featured a lot of walking but within a few years, I ran my first marathon. I discovered that I am naturally a very slow runner (I’ve only broken 30 minutes in a 5K twice, and I’m getting even slower with age), but I love the mental benefits – it’s like combing out my brain. I still bike and I also love hiking, walking, kayaking, snowshoeing, and open-water swimming. Anything outdoors! In my 50s I added prioritizing sleep, daily cold showers, and an “eating window” (usually noon – 9 pm or so), plus I’ve been a vegetarian since my teens. I’ve got what feels like an over-abundance of health. 

I remember hearing about kidney donation in the 90s and thinking “I could never do that…” In 2008, I met a young man who had donated bone marrow and described it as an amazing experience. I signed up for BeTheMatch but never got the call. In 2009, I remember reading the Larissa McFarquar New Yorker article about non-directed kidney donors. She vividly described how difficult they found getting the medical establishment to take them seriously and use them as donors, but ultimately she made them seem kind of strange for embarking on such a quixotic quest. Meanwhile, I continued to donate blood regularly (I’m closing in on ten gallons!). Then I saw Dylan Matthews’ story in Vox and a year later, in the fall of 2018, I listened to his podcast episode and decided this was something I wanted to do. 

I did a ton of research and reading. Kidney Donor Athletes was one of my main go-tos – I read every post! Finally, I broached the topic with my dear spouse Jonathan. I explained why it was an important thing to do – little risk for me, great potential to help, especially if I started a chain – and why I thought I, in particular, would be a good candidate: I had experienced some major surgeries in my 30s and bounced back very quickly. Long-distance running taught me how to listen closely to my body. I’m not a worrier and I’m fascinated by medical stuff (despite the fainting!). People with my blood type, B, tend to wait a long time for a kidney, so mine would be a help. I had plenty of sick time. Our transplant center is practically next door, just 20 minutes away by car. And it’s a great adventure; I thrive on big projects. 

The next step was to talk to my primary care physician at my annual checkup in November 2019. She was reassuringly matter-of-fact about it, confirmed you only need one kidney and said “Someone will really appreciate it.” For my 55th birthday, I asked Jonathan to make me a document embodying his support, all official-looking (just for fun). He went above and beyond with an amazing certificate, complete with a clip-art kidney giving me the thumbs-up, which gave me his “encouragement, endorsement, blessing, and 100% support.” That same day I filled out the interest form at the National Kidney Registry. Soon after, I contacted Tracey, who put me in touch with Jen, and through Kidney Donors Online I was able to connect with someone who had donated at my same transplant center. Having mentors who had been through the process was so reassuring! 

It was a year and a day from the first form until surgery, with COVID-19 accounting for about 3 months lost. Most of the time was waiting between tests and appointments, and then a long period where I was in the NKR pool to be matched. My wonderful transplant team kept me informed every step of the way, but here’s what I concluded from the process that my research hadn’t revealed: because of improvements in the system, like vouchers, long chains kicked off by a non-directed donor aren’t so much of a thing anymore. Type O is still tremendously in demand, but as an older, physically small, type B donor with a few extra veins and arteries, I spent two months in the pool waiting for a match. Ultimately, I was sent back to the waiting list at my center. That wasn’t what I had expected but there were a lot of silver linings: I still got all the NKR protections, my recipient is local, and best of all my kidney went directly to someone who did not have a living donor lined up and had been waiting a long time (as it turns out, my recipient, Christine, had been on dialysis for four years!) 

During the process I found out about the Living Kidney Donors Facebook group and joined despite pretty much hating FB and staying off it as much as possible. It was tremendously helpful. The group is super-active (over 6.6K members and growing), so there’s an incredible range of experiences. I found out much more about concerns and side effects people had, and used the search function to read up on what I worried about (increased heat sensitivity, long-lasting fatigue) – but as with any large group of people, I took the extremes with quite a bit of salt. All along I expected surgery and recovery would go well for me, and I was right, but it was good to be prepared for the negatives. One really fun thing was seeing the variety of nicknames people came up with for their kidneys – I made a spreadsheet as a way to pass the time, and, with Jonathan’s help, settled on Captain and Tennille for mine! 

None of the testing was particularly onerous aside from the 24-hour urine collection, but boy do they draw a lot of blood – donation experience certainly came in handy. Only Jonathan knew about what I was doing until right before surgery, so as an outlet I posted about my experiences on a private forum – it’s now all on my blog if you want to read more in depth. I told my boss once I went live in the NKR pool, but waited to tell family until I had a surgery date. And once I did have a date, Covid cases were starting to surge and I kept worrying it would be canceled. I didn’t want to cause unnecessary stress for my relatives, so I ended up leaving the announcement until a week before. Everyone was very supportive after some initial concern. I wish my dad had lived long enough to see me donate – we lost him last April – but I know he would have been proud. I didn’t tell any friends until after it was all over. It’s a much easier story to share after the fact! 

The surgery itself was no problem. My surgeon is amazing, and like most of his patients I went home the next day. My biggest mistake was not drinking coffee as soon as I could, because I got a caffeine withdrawal migraine. The incision itself hardly hurt at all, but the laparoscopic gas pains were very intense. I knew walking was the best way to clear the gas from my system, but I didn’t realize that short-term it would also aggravate the shoulder pain because the gas collects under the phrenic nerve and irritates it. Painkillers generally don’t help that, so I toughed it out and never took more than Tylenol. Overall I had about four or five hours of severe pain over the first few days, but no more than an hour at a time, and I knew it wasn’t causing damage and would go away. It also took a few weeks for my digestive system to settle down again, but that was just uncomfortable. 

I never felt the fatigue most people describe, so recovery has been a cakewalk. At my two-week follow-up, I was feeling pretty darn good and my surgeon cleared me to basically do whatever I wanted (run, bike, yoga) within reason. Four weeks out I was running my usual 6-mile long runs and felt totally fine. I had labs at six weeks and my creatinine is already down to 1.1, close to the normal for two kidneys! If it weren’t for the scars, which are fading fast, I would have no idea anything was different. 

I was hoping that I would be able to hear about my recipient. To my delight she was willing, and the team put us in touch. We’ve been emailing and have met over video chat; once we’re all vaccinated we’ll get to meet in person! Before my surgery, I read and researched everything I could about donation, but I didn’t know much about the recipient end, and it’s been really eye-opening. What I did was a breeze; the real hard work is done by the transplant patients, who bravely deal with their condition and still need to take medication and monitor their new kidney carefully. I’m especially in awe of Chris, who for years has volunteered to help other people on dialysis in all kinds of ways. It makes me so happy that my kidney is working hard for her and helping her feel better! 

I’m registered for the Hartford Marathon on October 9th, 2021 – my first one-kidney marathon – and I want to especially encourage other recreational marathoners to consider kidney donation. KDA shows how it doesn’t slow us down, but I think, as a population, we’re also especially suited to donation: 

  • We tend to be healthy, so are more likely to be approved as donors. 
  • Just like running a marathon, donating a kidney is something that most regular people consider a little crazy or even “impossible,” and we’ve dealt with those reactions. 
  • We have learned to really listen to our bodies. 
  • We have the experience of long-drawn-out planning and preparing process. 
  • We’ve built physical and mental stamina. 
  • We can deal with physical discomfort. 

 
Motivations to run and to donate can be similar: 

  • If one of the reasons you chose to run a marathon was to challenge yourself, to see what you could handle, to tackle a huge project and a huge adventure… you might find that kidney donation scratches those same itches. 
  • If you love the camaraderie, community, and feeling of belonging the tribe of runners shares, you’ll find something similar in the tight-knight and supportive donor community. 
  • If you wanted to savor the feeling of “I am a marathoner,” the identity that nothing can take away – becoming a kidney donor is like that in spades. 

Like most people, I sometimes have the 3 am syndrome of reviewing ways I’m afraid I’ve screwed up and things I’ve left undone. Several times now I’ve been able to tell myself, “Yes, but also I gave a kidney!” It is a deep comfort to know that I did something directly, unambiguously good, and I feel incredibly fortunate to have had that opportunity – especially during 2020

One thought on “Meet Kidney Donor Athlete, Hilary!

  1. Hi Chris. I enjoyed your story. Like your Dad I am first a blood (plasma mainly) donor. Since 1970; today donation 457. That made the concept of kidney donation easier to get my head around. kia ora

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