Rethinking what makes an organ donation successful
Clark’s experience is featured in “Abundant,” a new documentary about an uncommon form of organ donation: giving a kidney to a complete stranger, known as nondirected kidney donation. Of donors who give kidneys, less than 5% give a nondirected donation, according to the National Kidney Registry.
The film takes audiences through the experiences of people who choose nondirected living kidney donation, exploring what lead them to donate and the physical and emotional realities that come before, during and after the procedure.
The film was screened in Philadelphia at the AMC Fashion District on Friday, followed by a panel discussion on living organ donation, kidney disease and the barriers that can prevent people from considering becoming donors. Clark was among the panelists.
In an interview after the screening, Clark said donors understand the risks but also have to believe things will turn out well.
“You have to hold on to that … that the outcome will be good,” Clark said.
After Jim’s death, she began to see the outcome differently.
“I wanted my recipient to do well. I wanted [him] to live a long time,” Clark said. “But maybe that isn’t the only thing that matters.”
Clark said she became less focused on the outcome itself and more on the process, what she learned and what the experience meant to her.
Her story is one of several featured in “Abundant,” which explores what the film describes as “extreme altruism” through people willing to give an organ to someone they do not know.
Through donors like Clark, “Abundant” examines why people choose to donate, the outcomes they can experience and how much the public understands about living organ donation.
Public understanding of organ donation also became a focus of the discussion following the screening.
The panel, moderated by Dr. Anthony Watkins of Jefferson Health, also included Dr. Kirk Campbell, president of the National Kidney Foundation; Rev. Marshall Mitchell of Salem Baptist Church; and Naja Killebrew, who works in multicultural affairs for Gift of Life Donor Program, a nonprofit organ procurement organization serving the Philadelphia region.
Killebrew said misconceptions remain a challenge in her work in communities of color. Among the concerns she hears are that someone can be too old to donate, that doctors will not try to save a registered organ donor or that organ donation conflicts with religious beliefs.
She said addressing those concerns requires conversations that give people an opportunity to express their fears and learn how the process works.
“Most of the time when you give a person the time to talk and express what their fears are, you can turn it around,” Killebrew said.
Mitchell said community institutions such as churches can help connect people with information about donations that may not otherwise reach them.
“What we need to do is close this canyon, this great divide between what medical professionals know and what the church can know and then communicate that,” Mitchell said.
Campbell said that education should also include greater awareness of kidney disease. He said 90% of people with kidney disease do not know they have it and stressed the importance of detecting and managing the disease before patients reach the point of needing dialysis or a transplant.
“As much as we want to transplant as many people as we can, I think it’s even more important that we take the steps for patients to recognize the disease timely so it can be managed accordingly and hopefully never need a transplant,” Campbell said.