Updated: Apr 4, 2022
I’m writing this blog to be posted on World Kidney Day, March 10, 2022, and if all goes well, I’ll be summiting Mount Kilimanjaro to celebrate.
If you’d have told me five years ago I’d be an organ short summiting one of the tallest climbable mountains in the world, I’d have laughed hard and loud. Back then, I still had two kidneys and my usual hiking distance was about 3 miles. I’d been at the same job teaching nursing for 15 years and when anyone asked what was new, the typical response was about my latest vacation. A short five years ago I hadn’t met some of my best friends yet. I’m talking about the kind of people you meet and feel like you’ve always known. The ones who lift you up and you can be 100% yourself around. Not to mention I hadn’t met the Dalai Lama yet … but now I’m getting ahead of myself.
Twenty years ago, my sister, Sarah, told me she was donating her kidney to our then stepdad. He’d been on dialysis for a while and was so sick he couldn’t work. His marriage to my mother was terrible and he was miserable. I really couldn’t understand why my sister would give him her kidney. It was beyond brave. Right after he got her kidney, he had his color back, energy, and a new lease on life. For years and much to my sister’s dismay, I loved telling people we hardly knew that my sister donated her kidney. After all, she’s my hero. Not once while telling her story did I consider being a donor.
Fast forward 14 years. My sister and I were out at an event in Boulder, Colorado, called Ignite. One of the talks that night was by a woman named Sue who told the story of how her brother’s life was saved by a stranger who donated a kidney to him. I’d never heard of donating your kidney to a stranger. As soon as I heard it, I was compelled to do it. I’d like to tell you that I was overwhelmed by the thought of saving someone’s life, but it wasn’t like that at all. I just heard it and knew I would do it – that simple.
Just over a year later I became a non-directed donor (NDD). My kidney went to a stranger who had a donor that didn’t match them. That person paid it forward to someone in the same situation, and that happened again resulting in three people getting kidneys the day I donated. When you donate to a stranger, part of the screening process involves talking to a social worker to make sure you’re okay with never knowing who has your organ. In an NDD situation, both the donor and the recipient must agree to have contact to meet. In a situation like mine, the recipient had a donor and it’s not uncommon that they will never reach out. At first, I had a slight disappointment never hearing from my recipient, but that feeling was soon forgotten when I started on a trajectory I could not imagine.
The week I donated, I completed a graduate certificate in positive psychology. That’s that study of happiness. In that class, we learned about the benefits of habits such as kindness, gratitude, optimism, mindfulness, and forgiveness. Those benefits are for the person performing the acts, not for the recipient. Unbeknownst to me, the benefits I would receive from my donation would have a direct impact on my happiness for years to come. It would alter my life. Doors would open, friendships would blossom, opportunities would present themselves, and my life would change in unbelievable ways. For the sake of time, I’ll skip some of those details but a story for another time was when I stayed at a monastery in India to personally meet the Dalai Lama who thanked me for my donation. I’ll get to the very best part of the story … the friendships I’ve made.
Even before I donated, I started getting connected to donors. The first donor connection, made by my sister Sarah, was to a male model named Kristian. His story goes like this. He was working out at his college gym and saw someone he recognized (Dwight) come in that he hadn’t seen in a while. The guy looked terrible, and Kristian asked if he was ok. Dwight explained he had gotten sick and was in kidney failure. To be clear, Kristian didn’t know Dwight, he had just seen him around at the gym. Kristian gave Dwight his kidney and then started a non-profit called Go Save a Life to help others in need find kidneys.
Kristian decided he wanted to do a story about Sarah and me before and after my surgery and he connected us to a man named Chuck. Chuck was a filmmaker volunteering to help Kristian out. We met Chuck for interviews and learned Chuck needed an O+ kidney just like mine, but mine was already spoken for. Chuck was kind, personable, and eager to help raise awareness for donations. He came to my kidney’s going away party to film it, and he was at the hospital at 5 a.m. the day I donated to interview us. At my kidney’s farewell, a friend of mine named Toni sensed that Chuck needed something and asked about his story. The next month she stepped forward to start testing to be a donor but, sadly, Chuck died a few weeks later. I was surprised how hard we all took the death of this man we hardly knew. Prior to this, my sister didn’t really tell many people she was a donor. After Chuck’s death, advocacy took on a whole new meaning and we learned quickly that telling our stories was going to help people step forward to be donors. One of the first ways I did this was to give my own 5-minute Ignite talk about my donation.
In the next few months, I started connecting with other donors and talking to people interested in donation. One of those donors was a Wisconsinite Ultrarunner named Tracey Hulick. Tracey was moving to Denver and coming out for a visit to find a place to live. Like me, Tracey is a non-directed donor who heard about donation and decided she was going to donate. A big difference in our stories is that Tracey was in 7th grade when she heard about donation and thought about doing it – which still blows my mind. Before we even talked on the phone, I invited Tracey to stay with me while she was in town and the rest is history! We became fast friends with so much in common having nothing to do with kidney donation. Until I met Tracey, I could count on one hand how many times I’ve met someone I’ve instantly clicked with. Lucky for me she lived in Denver for a couple of years and that’s where we really started growing our donor community.
That summer, 2018, Tracey and I met another donor named Jose for happy hour margaritas. We had such a great time and one of us said we should try to get more donors to come next time. Well, we did and now there are over 100 local donors that connect in Colorado and 27+ “One Kidney Clubs” all over the world 3 years later. Clubs meet in person and on zoom for events and happy hour. I’ve made instant profound connections in this group of donors.
That same summer, Tracey thought more about the fact that she struggled to find other athletes to connect with prior to her donation. She knew that she could find a way to support other potential donors by increasing visibility around the fact that you can still be athletic and active after donation. So Tracey participated in a couple of ultramarathons and she started a non-profit called Kidney Donor Athletes (KDA).
Three years later, KDA has gathered 1000+ athletes from all over the world and it’s the only organization in the world that focuses on what you can do with your body after donating a kidney. Without even looking for them, the connections kept coming. Next up was the fabulous journalist Jen Reeder, founder of Rock 1 Kidney. Jen’s story was even more different than mine. When her husband, Bryan, was suddenly in kidney failure, it was a no-brainer for her to donate. After her donation, she made it her mission to spread the word about organ donation and tell the stories of people who have donated to destigmatize being a donor. That’s when she started Rock 1 Kidney. Jen and Bryan are two of the funniest and kindest people I know. If you’ve ever seen “The Grinch” you’ll remember at the end when his heart grew all those sizes. I swear to you, that’s the everyday heart size of these two. As fate would have it, I had recently moved to Denver only blocks away from Jen and so the first time we ever met was down the street at a bar for – you guessed it – margaritas.
That fall I was traveling to Seattle for vacation and somehow, I got connected to a man named Bobby McLaughlin who was set to donate in January 2019. I suggested we meet for coffee and that he bring others connected to donation. What we didn’t know then is that would be the first One Kidney Club Seattle meetup. Even though Bobby wasn’t a donor yet, he invited another awesome NDD named George, which made it official. That day in a Seattle Starbucks I couldn’t have imagined that Bobby would end up being one of my best friends. Bobby did in fact donate his kidney to a stranger in 2019. His story started with a bike accident where he needed surgery and he was given donor tissue. It was then he learned about organ and tissue donation. Eventually, he met his recipient who, thanks to Bobby’s kidney, lived three more years to raise his kids before he died of COVID19. A fact about organ recipients you may not know is that they spend the rest of their lives on anti-rejection meds and immunosuppressants, so their body doesn’t attack the foreign organ. For this reason, they are immunocompromised, and even though they can get vaccinated, their medications cause their antibodies to go down quickly making them susceptible to infection.
Bobby is one of the most compassionate people I’ve ever met and he hikes like a mountain goat. It’s not abnormal for him to hike 20+ miles in a day and think nothing of it. He joined the KDA group immediately and was part of the formation of the board of directors. In no time, he was visiting Colorado, climbing our mountains, and making donor connections. That’s around the time Bobby, Tracey, and I joined the team at National Kidney Donation Organization (NKDO, formerly Donor to Donor). NKDO is a donor-led organization with the mission of advocating for the rights of donors and raising awareness about donation. All three of us began volunteering with them and were there at the start of their donor mentor program. Now we help mentor potential donors from all over the country. I love being a mentor, but what I love even more are the friends I’ve made through that organization. People who are not only passionate about saving lives through organ donation, but who are full of love and kindness. One thing I would say about all of them is that they’re all your everyday extraordinary people. None of them would consider themselves heroes or special.
(Kilimanjaro training climb with 8 of the 22 climbers)
I could go on and on and on telling stories of the twists and turns my life has taken since I donated, like how it led to me quitting my college teaching job after 20 years, but I’m going to jump ahead to how I got here, ready to summit Mount Kilimanjaro. That part is easy. When some of your best friends embark on the advocacy trip of a lifetime, you tag along! You join them even if you don’t like camping or being cold. You sign up even if you aren’t a climber. You say yes even if you live in a state with 50+ peaks over 14,000 feet and you’ve only climbed the easiest one once (and didn’t enjoy it). You jump in even if you previously had no interest in even climbing anything close to that high. You go even if you prefer beach vacations. You raise money, get a packing list, and you make it happen. You do this because, just like when you donated your kidney, you’re compelled by something much bigger than you.
Giving away my kidney was a small price to pay for the profound impact it’s had on my life. It’s helped me learn to trust in the goodness of others and in myself. It feels like the ultimate proof that kindness benefits the giver more than the receiver. My life is much more meaningful, rich, vibrant, and the connections I’ve made are more profound than I could have imagined possible. Grateful doesn’t begin to describe how I feel. I am in awe every day that I get to live this life with the most incredible people in it … and it only cost me a kidney.
Right now, around 100,000 people are on the transplant list and around 13 die each day waiting. There are even ways you can help without donating a kidney. If you’re looking for a way to be an advocate for donation, check out the National Kidney Donation Organization (NKDO). It’s free and easy to become a member and the more members we have, the more we can advocate for donors and donations.
If you’d like to learn more about becoming a donor, check out the National Kidney Registry website. They have lots of amazing initiatives – one being that you can donate your kidney to a stranger and get a kidney voucher in case a family member or loved one ever needs one.
If you have questions for me, please reach out at email@example.com
In 1972 blood donation became an all-volunteer bank. Prior to that time, people were paid to donate, and giving blood was considered outside the realm of normal behavior. Now giving blood is an ordinary way of helping others have better health. We need to make kidney donation ordinary. We need to stop labeling donors as heroes and normalize that helping others is part of our role here on Earth.
(All of the KDA climbers in Tanzania preparing to climb Mt. Kilimanjaro)
“Be kind whenever possible. It is always possible.” – Dalai Lama
Here is the LINK to the segment on Good Morning America!
Patricia Graham RN, MSN, CNE