KIDNEY STORIES: FROM A DONOR’S POINT OF VIEW

http://www.app.com/videonetwork/2199931398001/A-kidney-donor-s-story

Sharing, caring Diverse leaders join forces to get word out on need for, benefits of  kidney donations

LAKEWOOD — After reading a Facebook post from a friend about the miseries of dialysis, Sharon Langert knew her life was about to change. Leah Topas, 43, of Lakewood was suffering from a disease that caused scarring on both kidneys and put her on dialysis to remove impurities from her blood.

Langert, a 44-year-old mother and social-media blogger who is married to Township Committeeman Steven Langert, decided to donate a kidney to her friend. But Topas had just found a match through Renewal, an organization that helps match kidney donors and recipients. She urged Langert to call Renewal if she still wanted to donate a kidney, because of the great need in the wider community. Topas had surgery in August 2011.
Recipients far outnumber kidney donors. Most patients end up on dialysis, waiting for a kidney transplant, said Rabbi Menachem Friedman, program director of Renewal, a Brooklyn-based Orthodox-inspired organization with an office in Lakewood.
 Searching for donors The introduction pamphlet for the organization discusses the special needs of the Orthodox Jewish community that go beyond “the actual referral of physicians and facilities.” While keeping traditions in place, the organization uses modern means to accomplish its goal of finding kidney donors. Renewal uses social media, newspaper, magazine and Internet ads and email lists of religious organizations to educate and localize the donor search, said Friedman, of Lakewood.
Several hospitals in the tri-state area do kidney transplants. Information is available from the National Kidney Foundation or through Renewal.
People feel comfortable to talk about illness within their own community, Friedman said. He said he believes that is part of Renewal’s success rate. During the past six years, Renewal successfully matched more than 190 kidney donors with recipients, predominantly  in the Orthodox community.
Cuban-born Pastor Glenn Wilson of the Restoration Family Worship Center in Howell said he hopes the black and Latino communities in the area can benefit from education about kidney donation. The Lakewood resident’s knowledge of kidney disease is personal. Kidney stones prevented Wilson from donating to his son, Robert, 29, who was near death and on dialysis, facing a six-year  wait for a kidney. Robert’s younger brother, Glenn Jr., 25, donated instead.
After reading an Asbury Park Press story about Wilson’s family ordeal with kidney disease and after seeing his wife’s sacrifice, Committeeman Langert led a recognition ceremony at the Feb. 7 Township Committee meeting, in which 16 donors, including Wilson Jr. and Sharon Langert, were honored, along with Renewal.
After learning of Renewal at the township meeting, Wilson hopes to use the Renewal model. Friedman and Wilson met Wednesday and now are teaming up.
“We have two kidneys, and medically we could live with one,” Wilson said. “When one person in your family is ill, the whole family is ill.”
Like birds of a feather, people suffering from a disease gravitate to each other. Wilson said he knows of many large families who have a member on dialysis, but have little knowledge about kidney donation. He believes fear from misguided religious beliefs and a lack of education prevents them helping each other. He wants to help the highest impacted population of kidney failure.
There are no costs passed on to a donor for testing or surgery, Wilson said. Insurance, including Medicare, pays all donor costs, Wilson said. Many people do not know that, he said.
Friedman added: “Kidney failure is like a slow, long death.”
“We chose to focus on the donor,” because it is harder to find donors than recipients, Friedman said. “We are not looking to push people to donate. We are looking to educate and inspire. People need to relate to someone that they trust.”
Though Sharon Langert was tested by Renewal to donate, it took several months before they called and told her about 34-year-old Orly Tyler, a Brooklyn mother in need of a kidney. Langert knew it was time.
“I could empathize with that. I am a mother,” Sharon Langert said.
“I really felt I was meant to do it,” she said. “The night before, my husband said I could change my mind. And I knew that I couldn’t, because this kidney was no longer mine. I was meant to nurture it in my body to help someone else.”
Two weeks after the surgery, she was caring for her family, shopping and working on her fashion blog. “It was amazing that I could do that,” Langert said. Lois Sutton, 58, of Tinton Falls said it was bittersweet, learning her 19-year-old son, Albert, was a perfect match for her sick 58-year-old husband, Sam, who needed a kidney and was on dialysis for a month. Only one family member, the couple’s son who was studying in Israel, tested as a good match.
“Dialysis was a horror,” Lois Sutton said. And yet, Albert “is my baby.” The family turned to Renewal, which helped the young man independently from his father. The surgery was done in July, with a good outcome.
“My heart went up and down. I don’t think I have thoroughly processed this yet,” she said.
Steven C. Rubin, 68, lives in Ocean Township and is a municipal prosecutor in Monmouth County. Every night his wife, who is a nurse, starts his 10-hour dialysis. It is not easy to conceal the disease and the quality of life lost to being hooked to a machine every night, he said.
Rubin learned about Renewal and is hopeful of finding a possible match.
“I am amazed by the number of people who are in the position I am in,” he said.

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