By Sabina Mollot
For the past 40 years, Stuyvesant Town resident Barbara Levin, an occupational therapist, has helped sick and disabled children develop the basic skills they need to maintain their independence, including many of her own young neighbors. However, because of a birth defect that left Levin with kidney disease — and now an imminent need for a kidney transplant — Levin is turning to the community she’s worked with for help.
Levin, who reached out to Town & Village earlier this week, said she’s been on the waiting list for a kidney from a cadaver for two and half years, but the waiting list is 7-9 years. Meanwhile, she’s already exhausted her options from friends and family. Fourteen family members as well as friends have already been tested to see if they’d be a good match and all were rejected for various medical reasons. Getting a kidney from a living donor would be ideal, she explained, because on average those last twice as long as the ones from cadavers, and they start working sooner with less of a chance of rejection.
As a child, Levin’s trips to the hospital for her kidney disease were endless. However, through close medical supervision, eating well and making other healthy lifestyle choices, Levin said as an adult she’s been able to lead a full life. She’s lived in Stuyvesant Town for 20 years which is also the age of her daughter, who she had and raised alone by choice.
Levin began her career as an occupational therapist at Kingsboro Psychiatric Center, then moved onto NYU Medical Center, helping infants and toddlers with cerebral palsy, autism and a host of other issues. Currently, she works at a public school on the Upper East Side, where she sees around 12 kids a day.
Although the health and function of her kidneys has been slipping over the past few years, Levin said she’s been able to continue to live mostly normally.
“It leaves me tired, but I don’t feel sick,” she said. She did, however, recently come down with shingles, because her immune system is weakened. She also developed Bell’s Palsy, a conditions that weakens the muscles on one side of the face, though that seems to be improving. Another effect of her condition is that she’s always cold.
“I couldn’t go swimming this summer,” she said. “I’d do three laps and I’d have to get out and warm up. My hand went numb when I tried to go swimming.”
Still, she feels it could be worse. “It’s a double edged sword,” Levin added of her relative good health, because that of course means she’s gotten pushed back further in the wait for a kidney.
“If I was on dialysis or I was diabetic or a very young child, that would bump me up. But because I’m fairly healthy I’m on the bottom of the list,” she said.
The time-sensitive nature of her request, however, is due to the fact that she’s supposed to start dialysis soon, which she said can cause the patient to become sicker.
As for all of those rejections of her would-be donors, Levin explained that there are many reasons that could make a person not a good match. Women who’ve had children sometimes have too many antibodies in their system, which would make a recipient more likely to reject their kidney. This meant one of Levin’s friends, who had four children, didn’t work out. Another friend was rejected due to high blood pressure. Her sister was rejected because she’d had breast cancer. Her daughter was rejected for having a pre-diabetes condition, since diabetes can damage kidney function.
“They don’t want to take risks for donors,” said Levin, “which I’m down with. I don’t want them to have any problems later on.”
As for her condition, Levin said one issue about it is that people don’t realize how serious it is.
“It’s sort of invisible. People I work with know I’m looking for a donor and say, ‘Wow, you look great.’ I say, ‘well, it’s all on the inside and it’s going downhill.’ Everybody’s got something they’re dealing with and you don’t know just by looking at them.”
Levin said she also wanted people to know that having just one kidney doesn’t affect people’s health or longevity and getting tested to see if someone would be a good match isn’t necessarily a commitment to go through with a donation.
Nevertheless she’s hoping to “cast as wide a net as possible” by approaching her neighbors with her request.
Of her daughter, Yona, Levin said, “I’m her only parent and she’s my only kid and she needs me. I have to be there for her and for the kids I work with and keep on keeping on.”
For more information about Levin and her search for a new kidney, visit her blog. Anyone considering becoming a donor is asked to contact the Mount Sinai Living Donor Program directly at (212) 659-8024 or visit the donor website to learn more about the screening process.