Susan Barton is an altruistic living kidney donor, who donated one of her kidneys to a stranger through paired exchange last year. This “kidney swap” that she was a part of saved two lives in one day. Written by Susan Barton; edited for publication by CC Cunningham, CKF Program Manager.
During times of deep transformation, something happens to you that make you realize your life will never be the same. I believe people enter our lives with the potential to change our hearts and help us become better versions of ourselves. When I become more open and vulnerable with others is when I feel most alive—a pathway to feeling human. I now choose to embrace my vulnerability and take the risk of opening up to my true self. About 4 years ago, I was struggling with my health and wellbeing, so I took action and met with a personal trainer, Matt Perdue. He taught me about nutrition and fitness to put it in a new light that, ultimately, altered my entire mindset: I became more focused on my relationship with food and exercise, which helped shift my priorities and the way I saw myself.
During one training session with Matt, he mentioned that his sister, Shannon, needed a kidney transplant and was having trouble finding a successful match. He mentioned that Shannon’s blood type was O and, almost instantly, I began wondering if I was the same type. I said to him, “If I could give your sis my kidney, I would.” It was within that moment that a “wave” of inner knowing hit me. I had never experienced anything like it in my life—it felt like I was receiving a sort of “life invitation” from him. Although he never asked me for help, I had an innate desire to help him and his sister.
I scurried home and rummaged through my files to find my blood donor card. Unfortunately, I wasn’t a match with my AB positive blood. Regardless, from that point on, I knew I wanted to help Shannon. It didn’t matter that I’d never met her before—Matt had touched my life and completely transformed my health and emotional wellbeing for the better; I wanted to pay it forward; I wanted to give back; but most importantly, I wanted Shannon to stay here, on earth, with Matt and the rest of their family.
I was exhilarated that I could take action. I did some research and learned more about the process of paired kidney exchange, in which a living kidney donor who is incompatible with their intended recipient can join a pool of other pairs of incompatible living donor/recipients. If the recipient from one pair is compatible with a donor from one of the other pairs, their kidneys are “swapped” to go to the compatible recipient. I could take this approach to help Shannon. Wow! It was a new beginning—not just for me, but as a way to bring the unseen, direct gift of life to a stranger. I always wondered what a new beginning felt like for other people—if it’s like the feeling an artist has when touching their paintbrush to a blank canvas—and now I was getting to experience it for myself.
I reached out to Matt and he connected me with Shannon and her transplant coordinator. Her transplant coordinator informed me that she currently had donors being evaluated and she was very hopeful that they’d find her a match soon. I was elated to hear that Shannon had so many people who interested in helping out, as I was. Her transplant coordinator assured me that she would add me to the list as a backup option, if they did not find a proper match.
Through my investigation of still wanting to support Shannon, I checked the RSVP box to start the testing process to become an altruistic donor. I knew I needed to be comparatively healthy prior to any sort of testing or donation—I was just an average 46-year-old woman at the time! I was already on this quest of finding ways to improve myself: through my personal training sessions with Matt and the guidance he provided me, I truly was aligning my mind and my body with my best self. Now, I wonder if this quest was really for me after all? Looking back on it, I believe this quest for better health was for a stranger rather than for myself.
While waiting to hear back from Shannon’s transplant coordinator about the status of her donation, I received my first orders for 24-hour urinalysis and lab work. I was so excited to start the living donation process.
I soon heard the news that Shannon had been paired with a donor and her transplant surgery was scheduled. She ended up receiving her new kidney on March 4th, 2020, at UT Medical Center. Without hesitation, I decided to continue the process of becoming a donor and I would donate to someone else “in honor of Shannon.” The day she received her transplant, I reached out to Matt and thanked him for sharing his sister’s story with me because, if he hadn’t, I wouldn’t be on the path to helping somebody else.
After taking one of the final tests to qualify as a living donor, I decided to go for a celebration run along the San Francisco Bay. The air was cool and the soft, gentle breeze was empowering. Along the way, I discovered a piece of artwork, titled “The Wave Organ,” an acoustic sculpture made up of a collection of organ pipes that feed directly into the ocean. Sound is created as the waves crash against the pipes and the water flows in and out of the structure, which creates both a unique place to explore and a beautiful thing to experience, as you hear how the water interacts with the pipes to create music. I was the only one there and I quietly reflected on everything that I had gone through and that laid before me. How lucky am I to have this opportunity! I felt so blessed.
On October 7th, 2020, it happened: I received one of the best phone calls I could ever hope for. My transplant coordinator at UCSF confirmed that I had passed all the tests and I was officially able to donate my kidney. I felt truly alive as my body radiated with joy…it was happening! And I believed it! To be capable of changing someone’s life for the better—a total stranger—was the gift of a lifetime. And to think of the profound impacts my decision would have—on the person’s family, friends, and loved ones—I realized it was more than just a singular gift I was giving. It was one of many. I thought back to my run along the SF Bay and, in a strange way, I felt deeply connected to The Wave Organ.
My donation surgery was scheduled at UCSF for Tuesday, November 24th at 7:30 AM. Finally, the day of my surgery was here! The day I’d been thinking and praying about for 11 months. I don’t think I slept the night before and my 4:30 AM alarm couldn’t have come sooner. I was extremely excited as my husband drove me to UCSF—it was like the feeling of driving to Disneyland!
Everyone from the surgical team came to visit me prior to the surgery. They introduced themselves and shared what their role would be during the operation. This brought a lot of comfort to me and, as I was being escorted down the hallway to the operating room, I was in a state of incredible peace. I can’t properly articulate the sensation, but I can tell you with confidence that it was the best feeling I’ve ever experienced in my life.
I remember waking up after the surgery and my doctor saying to me, “All went well. Your kidney was so healthy, it practically jumped out of you!” I was over the moon. I had donated my kidney to a 65-year-old gentleman at the Mayo Clinic in Phoenix, AZ. I thought about my transplanted kidney enjoying the new landscape in Phoenix—I’d always wanted to visit AZ, I just didn’t think it would be in that capacity (wink)! My non-direct donation was part of a swap between 4 patients that day. Moreover, all 4 patients are doing well. My heart is forever full.
The experience of my kidney donation was an unparalleled event, unlike any other adventure in my life. It was the most empowering and rewarding gift I’ve ever given. What if you’ve always wanted to deep sea dive, but you’ve always been too scared to give it a try? You’ve even gone out and purchased the scuba gear and, day after day, you go out to the sea, but you never go beneath the surface. You never discover the beauty that lies below the water, that’s within your reach, but your fears hold you back. If you live in fear of the water and never find your inner courage to take the plunge, how will you ever know what you’re truly missing? Our lives are filled with so many uncertainties. Ever since I was a little girl, I’ve always been shy, with low self-esteem, and never had enough courage to take any real risks. However, when I began to take care of myself and my wellbeing improved, it helped me overcome my lack of confidence. And, when an opportunity arose to take a chance—something I truly believed was the right thing to do—I was confident enough to step back and ask myself, “Why not take that risk? Why not take that plunge into the waters of uncertainty to do what’s right?”
Last year, I embarked on a journey of a lifetime. Through my decision to donate my kidney to a stranger, I realized when I live in the open space of vulnerability, I feel most alive. Since then, it has become my best intention and hope to heighten the level of awareness around living donation and encourage others to donate as well. I believe we all have something to contribute in life, whether that’s donating an organ to save lives or inspiring others to accomplish what they believe in. No matter how big or how small, what you do always has the potential to create a ripple effect—just like throwing a stone into still water. You never know where the end will be.
“May I have the courage today to live the life I would love. To postpone my dream no longer, but do at last what I came here for and waste my heart on fear no more.” ~ John O’Donohue