Vivian Jepp – a Port Washington resident, mother of triplet boys and former school teacher of 21 years – began her long battle with kidney disease just after graduating from college when she was diagnosed with lupus.
Four years ago, her kidney from a transplant she had 20 years ago failed, which resulted in Jepp’s return to dialysis treatments, forcing her to quit her job, she said. She currently undergoes treatment three times a week for four hours a day.
But Jepp is not alone in her search for a kidney; this time she has the help of Rhoda Schneider, an organizer who has helped more than a dozen people find living organ donors over the course of 18 years.
A living donor is willing to donate one of his or her two active kidneys. Schneider said she knows about 40 living donors, all of whom she follows up with and have been good health since their donation. Schneider is a living donor herself, having donated a kidney to her husband 20 years ago.
Schneider, a Roslyn resident and a former teacher at Manhasset public schools for 30 years, sets up individualized campaigns for the people she helps.
“What an advocate,” Jepp said. “She just works so hard. We just met a week ago.”
For Jepp, Schneider and her team created a flyer displaying the Jepp family, which Schneider said would be handed out at book fairs, PTA meetings and South Salem Elementary School events. Another member of the group plans to walk through town to spread the word, Schneider said.
Schneider and her team also passed out flyers at the Greek Festival on the Harbor over the weekend at North Hempstead Beach Park.
The central message of the flyers is to spread awareness about living kidney donations and list websites to learn more about becoming a donor or Jepp’s story.
“I never ask for a kidney,” Schneider said. “We tell the story, we tell about living donation and you spread the word.”
She said none of her campaigns accept money donations because she said that many people often think they are off the hook after giving money. In this case, she said, she only wants people to spread the word about living donors.
Schneider said a living donor could be anyone. When asked to detail the profile of a living donor, Schneider said it is anyone who is made aware that he or she only needs one kidney and responds to the call to action.
Jepp, a mother of three 8-year-old boys at South Salem Elementary School, had a tough year last year where she was in and out of the hospital, Schneider said, and cannot wait four-plus years for a deceased donor.
“She waited patiently on the transplant list thinking that this would happen,” she said. “It doesn’t; you really have to go out.”
Jepp has Type A blood and therefore can receive donations from fellow Type A blood types or those with an O blood type. Schneider said that means Jepp can receive a kidney from about 80 percent of the population, but because of her previous transplant Jepp has antibodies.
The transplant would take place at New York-Presbyterian, a hospital that Schneider said is highly experienced in living kidney transplants with over 265 transplants conducted last year.
She said the hospital is also part of the National Kidney Registry, which pairs donors and recipients.
Schneider said Jepp’s antibodies could pose an issue and the registry will give her a “much, much better chance of getting one that will last until she is at least 90.”
“That would be great,” Jepp said.
More information on living donations is available on www.lkdn.org. Those interested in learning more about donating to Jepp can call New York-Presbyterian Weill Cornell Medical Center at 212-746-3922 or can email [email protected].