Kidney to share - Explore Transplant

Introducing Martha Gershun, New Living Donation Guest Blogger

In 2018 I donated a kidney at the Mayo Clinic to a woman I read about in the newspaper (1). Deb Porter Gil was in her mid-50s; the mother of two young adult daughters; a retired attorney, raised in Kansas City, where I lived; who had recently moved to Ft. Lauderdale, Florida. Decades before, while still in law school in Kansas City, Deb had been diagnosed with insulin dependent diabetes. Several years later her kidneys began to fail from unrelated chronic kidney disease. In 1999 she received a combined kidney/pancreas transplant from a deceased donor. When that kidney began to fail 18 years later Deb reached out to the community to find a living donor.

Her story spoke to me. In 2001, my beloved cousin Ann was put on the national transplant list after beginning dialysis. Polycystic kidney disease, one of the most common genetic disorders in the U.S., had caused her kidneys to fail. Ann was in her mid-50s, with two young adult daughters – just like Deb.

Many family members offered to donate to Ann, but none matched. Friends also offered, and one special family friend, Cheryl, matched and was able to successfully donate (2). We enjoyed many more happy years with Ann thanks to that generous gift, years filled with family visits and celebrations and traditions. I knew firsthand what living organ donation could mean – to a recipient and their family.

The timing was also good. I had concluded my career as a nonprofit leader that year, most recently serving as Executive Director with Jackson County CASA (Court Appointed Special Advocates), helping young people in the child welfare system. I was looking for a new project, another way to make a difference.

Donating my kidney was one of the most profound experiences of my life. Medically, the process was safer and much less scary and painful than I expected. My surgery went well, and I recovered quickly. I was released from the hospital after two nights, and drove home to Kansas City four days after that. I was out walking around my neighborhood within the week, and by the end of the month felt well enough to accompany my husband on a trip to New York City, where I saw two Broadway shows and walked for miles. Now, 3 1/2 years later, I remain strong and healthy at 65, with excellent kidney function, and no long-term side effects.

But practically, the process was much harder than I expected. There were numerous complications caused by my distance from the transplant center (Kansas City is a six-hour drive from Rochester, MN); limited scheduling options for certain specialists at the clinic; and logistic snafus. There were significant out-of-pocket expenses for travel (we estimated over $5,000, which my recipient reimbursed). My husband missed 16 days of work in his role as my caregiver.

We jumped over every hurdle, determined to save Deb’s life if we could, but I began to think about how difficult these barriers would be for potential donors without our available time (I was retired, our kids were grown), financial resources, and organizational skills. My educational background – I earned an MBA from the Harvard Business School, where I studied service operations, customer experience, and marketing – and my long career in corporate and nonprofit management led me to think about the many ways the system might be improved.

Determined to learn more about transplantation and advocate for reducing barriers for living donors, I joined my regional advisory board of the National Kidney Foundation, and I invited my good friend Dr. John Lantos, a doctor and bioethicist, to collaborate on researching and writing a book about living organ donation. In 2021 Cornell University Press published Kidney to Share (3), and we embarked on a virtual book tour, speaking at over 30 transplant clinics, bioethics centers, and medical schools. With every presentation, I learned more from the clinicians, recipients, and donors, who joined the discussion. I have been privileged to meet many others working on these issues, and I recently joined the Kidney Transplant Collaborative as a Special Advisor to contribute to their important work (4).

I am excited to share my personal experiences and the information I have gleaned about living organ donation with the Explore Transplant community. In the process, I hope we can work together to lower barriers to living donation, allowing more people to experience this miraculous process and helping save the lives of more kidney patients around the country.

Martha Gershun is a nonprofit consultant and writer living in Fairway, KS with her husband Don Goldman. Her most recent book, Kidney to Share (Cornell University Press, 2021), with co-author John Lantos, MD, details her experience donating a kidney at the Mayo Clinic to a woman she read about in the newspaper.