I donated my kidney to a stranger in December of 2014 at the age of 46. I am a bit embarrassed to say that the thought first came from social media. I had an acquaintance repost a photo of someone looking for a type O kidney donor on the back of their vehicle just after Christmas of 2013. My first thought when I saw that was that I have type O blood and that I should investigate this. Many of us who are non-directed donors will tell you there is nothing different about us but the fact that some of us would see that post and be inspired to do something is telling.
I had been a regular blood donor for 5 years until my mid-20’s when the Red Cross sent me a letter telling me that I had tested positive for all kinds of things and that I wasn’t welcome back. Donating blood for me was so important and to not be able to give left me sad and angry, especially when further testing revealed I had none of the conditions that they said that I had tested positive for. It would take 30 years for them to change their policy and allow me to be retested and accepted. This happened 3 years after my kidney donation. Imagine the irony that I could give an organ away but not my own blood! Turns out the Red Cross had a new test for hepatitis in the late 1980s that ended up causing a fair number of donors to test false positive. I think it was this lack of ability to donate regularly that also influenced my decision to investigate kidney donation.
After seeing that FB post I began to do an online investigation of kidney donation. I didn’t tell a soul because, honestly, in my own head it sounded a bit crazy. I learned that I would not be able to take NSAIDs. This was my biggest concern. As a runner and cyclist, I had used, and probably overused, this over-the-counter medication. I developed plantar fasciitis in my late 30’s in both heels and struggled with that for two years. During that time, I popped NSAIDs like Pez candy. If I was going to consider kidney donation, I would need to live without this, but could I? So, I put myself on a self-imposed diet of no NSAIDS for 6 months to see if I could survive—and I did.
Meanwhile, my investigation continued. By early summer of 2014, I made the call to Brigham and Women’s Hospital to see if I could donate. The coordinator was amazing and let me know that I could do most of my work up locally. That night I told my husband what I had done. He never tried to talk me out of this and gave me his full support though he admitted it did sound crazy. Testing took about 4 months and it was in the fall of 2014 that I was cleared to donate. My name would go on the National Kidney Registry list and about two weeks later I would get the call. I still remember the day so clearly as I was listening to Full Force Gale by Van Morrison (if you don’t know this it is about finding faith in the Lord and though I don’t consider myself to be a very religious person, I have to say I felt “Lifted up again” as the song says, to make this decision).
Though I had my husband’s support, it was discouraging that some of the reaction I got from others close to me was not positive. I am a dietitian who manages a surgical weight loss program and one of my bariatric surgeons strongly encouraged me to not donate and even sought out my husband out to encourage him to dissuade me of this “crazy” idea. I understand her though, because surgeons, as a rule, don’t advocate for unnecessary surgery due to risk. Another friend was strongly against this decision so I felt like I couldn’t really speak to her much about it. I lacked the words when trying to tell people why I wanted to do this, which probably didn’t sell the idea well.
Compared to many who share their stories here, I hadn’t really considered myself an athlete. I have never done an ultra and the one mini-tri I attempted, I nearly drowned (panic attack in open water). I have done 5 marathons and multiple (cycling) centuries in my past but my marathoning days are over due to some back issues. In my mid 40’s I had settled into a pattern of a few half marathons a year with some long-distance biking events. Knowing I was going to donate and that my physical activity would be curtailed for many weeks, I was strategic about my pre-op exercise. I tried to get in the best shape possible with pushups, pull-ups and half marathon training. I ran a half marathon 2 weeks before my donation and did a 5-mile run the day before surgery but that was mostly to calm my nerves.
Coming back to running, in Maine, in the winter was rough. I had come back from running after two pregnancies, but they were not C-sections. I read on Facebook about a few donors who did 5 K’s and half marathons within 2-3 weeks of donation. That wasn’t me! I was still tired, having gone back to a desk job at 2.5 weeks postop. My kidney surgeon didn’t know why I would need any more time off. In retrospect, I really wish I had taken a month off. But I had a great friend who met me every day for my first two weeks home to walk with me. It was mid-December in Maine and cold. There were days I didn’t want to go but there she was at my door. Thank God for her. I am a notoriously fast walker and it was in the second week that we were up to 3 miles daily at a good clip where she was asking me to slow down. Still, it would not be until 6 weeks postop when I could take a few steps running without feeling a tugging on my incision. I had been seriously warned by my surgeon to avoid too much activity for fear I would get a hernia and need a second surgery.
I thank Hal Higdon for his beginner training plan for half marathons but honestly just getting to being able to run 3 consecutive miles without being a bit winded took a few months. Fast forward to May of that year and I would run, though I had only intended to walk, the Shipyard Half Marathon in Biddeford Maine. This has got to be one of the most scenic half marathons and I strongly recommend you consider a trip to Maine to do this. My 22-year-old daughter had planned to run with me but had gotten mono that spring so she wasn’t able to run more than the last 4 miles with me. The actual day was my 6-month kidney donation anniversary and she met me and told me how proud she was of me. My time was only a few minutes slower than my usual half time. So, I am a firm believer in getting into the best shape possible before surgery so that it is a bit easier on your recovery.
Five years later I am a bit slower, but I relate that to my age and not my lack of a kidney. I completed my second Millinocket half marathon two weeks before Christmas, a day the temperature in Maine at the start was a balmy 10 degrees. This is a free half or full marathon designed to bring runners to an impoverished former mill-town and has been written about in Runner’s World. The only goal is to have fun and spend money in the community. I am proposing that as many rugged kidney donors come to Maine for 2020 (12.5.20 for more information find them on FB “2020 Millinocket marathon and half”).
Millinocket half marathon with a view of snow-capped mount Katahdin
My husband and I have signed up for Bike Maine, a week-long cycling event that changes location each year and this year will focus on the Katahdin region, home to Mount Katahdin, the tallest mountain in Maine and site of the northern end of the Appalachian Trail. Though I never aspire to hike the AT on my 50th birthday in August 2 years ago I hiked Mt Katahdin (5267 feet) which was much harder for me than anything I have done since surgery.
Five years later most days I forget that I donated a kidney. I am grateful for my good health and think that being an athlete helped me to get back to daily living so much quicker after donation. I am inspired by the stories of other athletes who challenge themselves daily and encourage others in the process. Thank you for letting me share my story. See you in Maine soon!
