By Mary Robinson – I am social. I play tennis and guitar, sing with a big band, and volunteer with a disaster relief organization. One of these activities turned out to be my pathway to living donation -and for 8 strangers, a pathway to new lives.
Almost 20 years ago, Diane Brockington and I played doubles together in San Diego – and so I knew the story of her kidney donation to a friend in 2001. In this first encounter with a living donor, I thought, what a great story. And thought that was it.
On a summer day in 2014, I drove my neighbor and friend Char, who suffered from type 1 diabetes, to her first kidney transplant appointment. Char asked me to go in with her, and as we approached the exam room, the nurse asked if I was a potential donor. I said, “No” but inside the examination room I thought to myself, “Well, I guess I could be. I actually know a living donor and could find out more.”
I consider myself relatively well informed, but there was a lot for me to learn, myths to dispel, questions to be answered. I found the best people to help me were those who had gone through it. And what better person to ask those first and sometimes personal questions of than a woman friend? Something else I didn’t know: women make up two thirds of living kidney donors and the vast majority of transplant teams in the US. I’d found my source of information and inspiration, and decided to be tested.
Char and I were overjoyed when I was declared a match. Because of a family situation, Char needed to delay transplant surgery, a risky choice for someone who’d been on dialysis for 3 years. And then, time ran out. After a bout with pneumonia, Char suffered a heart attack and died months before the planned transplant. She was 63. I was stunned. The median expectancy on dialysis is 5 years, and I thought ours would be a story with a happy ending.
Char’s death hit me hard. I’d imagined my kidney saving her. But something happened in the year since I’d been tested. I’d learned about something most people outside of transplant don’t know: you don’t need to be compatible for your recipient to receive a new kidney. It just might not be yours. What?! Finally, we learned of a process many are unaware of – a matched exchange where patients with incompatible donors swap kidneys with other incompatible pairs. By exchanging donors, a compatible match for both recipients can be found. This can involve 2 pairs or long chains of pairs, every patient receiving the closest match. This only works if a single donor requiring no kidney in exchange starts the chain by altruistically donating a kidney – me! One after another the chain of transplants match donor and recipient until everyone has a kidney.
So I thought of all the people out there like Char – 101,000 in the US waiting for a kidney – called the transplant center, and told them I wanted to go start a chain. With my “universal donor” profile, I could be the one to set the chain in motion because I didn’t come in as a pair needing a kidney. And then things moved really fast.
As with most non-directed chain donors I was matched with a hard to match woman. Her antibody level was at 99% which meant that only one person in 100 would be a match for her. Me. We were a “go”. Her incompatible friend then donated… and on and on. From being denied the chance – and as many think, seemingly the only chance – to donate a kidney, I was able to start a chain that included 7 states, 16 surgeries, and 8 patients receiving new kidneys.
The story doesn’t end there. One of the people I met through Diane was Genene. Introducing us at a John Brockington Foundation event – and seeing us chatting like long lost sisters – was the impetus to form WELD (Women Encouraging Living Donation) – women adopting a cause poorly understood and using their personal stories to educate and inspire. Genene also participated in a chain, allowing her friend Bernie to receive a kidney – along with 11 other patients in the US and abroad. Two founding members of WELD, 20 patients receiving kidneys – all because we were brought together, shared, learned, and acted.
And this is why I’m sharing my story here… to demonstrate what can happen when women share theirs. There needs to be a place for patients, their families, and those who have just heard of living donation to ask questions of living donors. WELD is that place, the only face-to-face community of living donors in the US. Help WELD become the first line of contact for the public on living donation, to know the options, the solutions, the hope it offers – even if you don’t “match”.
It begins with stories. Genene and I helped rewrite the endings for 20 patient stories, an outcome we want to share with the public. The living donors of WELD, alongside social workers, coordinators, nurses, and transplant surgeons, work to dispel myths, humanize, and normalize living donation. We do it by tapping into the power of women to advocate for causes close to them – but we need your help.
With your support of our crowdfunding campaign, you can be a part of building the WELD community and most importantly… save lives.
Support the WELD Crowdfunding Campaign now
Lead image: Mary and her friend Char, courtesy of Mary Robinson. Published on Women You Should Know with express permission.