As clinical manager at the Fresenius Medical Care dialysis center in Parsippany, New Jersey, Barbara Miller knew first-hand about the hopes and challenges renal patients face while waiting for a transplant. What she was not prepared for was the joy and gratitude she felt when she decided to become a living donor. The Fresenius Medical Care Foundation aims to encourage more people to help change lives in this way.
When her grandson Danny was born with kidney disease in January 2010, Barbara Miller’s work offering professional, yet compassionate care as a nurse for renal patients at her dialysis clinic suddenly took on a deeply personal meaning. Her grandson required around-the-clock-care and spent the first five months of his life in a hospital before finally being allowed home. The newborn’s ordeal inspired Miller, clinical manager at the Fresenius Medical Care dialysis center in Parsippany, New Jersey, to volunteer to be a living donor for her newest family member. “Watching Danny struggle was definitely the catalyst,” she remembers.
Empowerment paves the way
After initial tests, it turned out that Miller’s sister, who is ten years younger, was better suited to give a kidney to the infant. Danny had to wait until September 2012 when he was almost three to receive the transplant. “The kidney worked immediately. He did really well, started crawling and talking – things he hadn’t done before,” the 63-year-old nurse recalls, still visibly moved. She composes herself and adds: “I still get choked up thinking about how incredible it was to watch this little guy, who had gone through so much, get better.”
This experience and her almost two decades of working daily with renal patients inspired Miller to help others and become an altruistic donor for a stranger. In December 2013, she underwent surgery to donate a kidney to a mother of four she had never met before. “I wanted to give something back and share the good karma. People with dialysis struggle every day,” she says. “It’s not an easy life for them, even though they may not complain.” Miller also knew from her work that most renal patients silently wish for a transplant but are often too shy or even embarrassed to ask family members or friends, for fear of being turned down.
I wanted to give something back and share the good karma.
The waiting list keeps growing
Miller’s story shines a spotlight on the uncertainty and psychological burden that comes with waiting for a life-saving transplant. There are close to 100,000 patients in the U.S. who need a kidney transplant, and every ten minutes another person is added to the waiting list. While an estimated 20,000 people received a kidney transplant in 2018, only about 6,400 of them came from a living donor. And, depending on where someone lives, they could be on the waiting list for an average of three to nine years. These statistics could be greatly improved if more patients were empowered and trained on how to ask, and more people were educated and inspired to donate.
The Fresenius Medical Care Foundation was created to help the patients, families, and communities most greatly impacted by kidney disease. Today, it is focused on raising awareness of kidney disease and transplantation as a life-saving solution. The Foundation has embarked on two partnerships to inform, educate, and attract potential kidney donors, and help patients to find a donor who can save their lives.
Easier testing for potential donors
The first grant provided by the Foundation went to Donate Life America (DLA), a U.S. nonprofit organization committed to increasing organ donation, to build the first national, universal living donor registry, which is scheduled to go live in the U.S. in 2020. The registry is intended to be a hub for anyone interested in becoming a living donor. As such, it would augment the procedure currently used by transplant centers and hospital networks around the country, which require potential donors to take the time to drive to a chosen location for initial consultation and tests.
With the Foundation’s financial support, DLA will also create an easy-to-use home testing kit for potential living donors, which is expected to be released at the same time as the registry. Using a saliva sample similar to those already offered by ancestry research companies, the kit is designed to provide fast, consumer- friendly screening that will be distributed to patients for use by friends and family members. Once the test has been sent in, the results can be converted to a possible match efficiently and safely. The kit stands to greatly expand the pool of potential matches and cut the average wait time to receive a kidney. The kit and registry combined have the potential to double the number of living donors within a year, estimates Jessie Newman, Fresenius Medical Care North America’s Director of Community Relations.
The courage to ask
But to really make an impact, a second approach is also needed: empowering patients and families by giving them the right tools, information, and a healthy dose of self-confidence so they can share their story and find an organ donor. “I didn’t fully understand the barriers that patients faced when it comes to talking about their need for a kidney – even to a close friend,” says Newman. To ease that psychological burden, the Foundation has partnered with the National Kidney Foundation to significantly expand its “THE BIG ASK – THE BIG GIVE” in-person training around the country.
Miller thinks this educational push for both patients and potential donors is long overdue. “A lot of people would give a kidney if they only knew about the need. Even my patients are often reluctant to discuss the topic with their own family members,” she says, as she plays around in her yard with grandson Danny, who turned ten in 2020.
One regular dialysis patient at her clinic in New Jersey finally mustered the courage to ask his son for a kidney. “He said yes, and they are both doing amazingly well. These are the stories more people need to hear so they can decide to do good.”
Fresenius Medical Care Foundation
“THE BIG ASK – THE BIG GIVE” (BABG) is the National Kidney Foundation’s free platform of programs, resources and support for kidney patients and their families. It helps them overcome their inhibitions to share their need with family, friends, and members of their community to find a living donor. BABG includes a four-hour, in-person training that teaches patients through seven strategies to tell their story and let people know how they can help. The National Kidney Foundation launched the BABG in-person training in 2018. Thanks to support from the Fresenius Medical Care Foundation, it was expanded to an additional 15 locations in the U.S. in 2019 and 2020. To learn more about the Fresenius Medical Care Foundation click here.