Man in Need of Kidney Donor Turns to Social Media

Search for a transplant leads Ditmas Park retiree to the world of blogging, tweeting and Facebook.

Neil Jaffee was never a big fan of the internet. He had no use for Facebook or Twitter, used email because he had to and considers the youth of this generation to be full-fledged technology addicts. But lately his outlook on the Web has changed considerably.

"I didn't have much interest in social media before this," Jaffee, 69, told Patch.

The "this" Jaffee speaks of is polycystic kidney disease, or PKD, an inherited disorder that causes the kidneys to fill with cysts and become enlarged, making it difficult to breathe and other complications such as high blood pressure. The disease is broken into five stages, and Jaffee, who was diagnosed in 1997, entered stage four in October.

"If and when it reaches the next stage, it means dialysis," said Jaffee, who has an AV fistula in his arm that is ready for dialysis.

"It's not a very desirable situation for a father of two young children. Dialysis will keep you alive, but it's not as good as having a kidney."

Jaffee is registered with the Transplant Unit at Mt. Sinai Hospital in New York, but the wait for kidney in New York State can take four to seven years. Finding a living donor would be much more preferable, so Jaffee got to work on finding one.

With the help of his wife, Laura Warshawsky, and a good friend and web administrator Sam Merrell, Jaffee created a Facebook account, Twitter account, and most importantly, neil-kidneytransplantinfo.com, a website with information about his journey with the disease and the donor process.

"I started the web[site] to help increase awareness of organ donation and to indicate that I need a kidney," he said.

Finding someone willing to donate a kidney, even a non-matching one, would mean that Jaffee and the donor could enter into a matched exchange chain with the National Kidney Registry. "Incompatible pairs can generally be matched in the Registry in a week or two with donors that are highly compatible," the Registry's website reports.

In addition to reaching out to the community-at-large on his own behalf, Jaffee views his website as a vehicle to help others. "I'm composing a blog about exercising, swimming, and how it's helpful to maintain your health," he said.

Jaffee, who was a triathlete well into his 50s, still exercises regularly, lifting weights and swimming. "I'm 69-years-old and there's nothing wrong with me, other than my kidneys," he said. "I keep working out. I want to be in shape for surgery."

Exercising also helps him to breath, both physically and mentally. "This whole topic is sort of surrealistic in a way," he said. "You're going about your daily life and then all of a sudden [you think], 'Oh yeah, I need an organ.' I try not to think about anything else [when exercising]. I just think about swimming."

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He also has other interests that keep him busy, but Jaffee, a private person by nature, had to work on revealing those facets online. "I had to break down a lot of [self-imposed] resistance. You have to do that if you want to get a kidney."

"I need to reach out to altruistic donors who might not even know me, so I try to put in information [on the site] that people can identify with," he said.

So Jaffee wrote about all facets of his life, including his wife, the adoption of his two daughters from China, his 35-year-long career as a high school science teacher, his commitment to music and his chorus, the New Amsterdam Singers, as well as his family's history with the disease, which claimed the lives of his father, aunt and paternal grandfather.

"I try to put stuff online about me that people can identify with," he said. And identify they have; many have reached out to share their own stories with Jaffee.

"I have to realize that this takes a certain amount of time. I have to ask myself 'how many people can I reach? How can I improve what I'm doing? What more can I learn about?'"

It's his ability to see the bigger picture that has brought Jaffee this far, and continues to push him to remain on top of his game. "Everybody has a crisis, just growing older, realizing you can't do the stuff you used to; this [disease] accelerates those concerns" he said.

"The population is getting older, but our organs break down, so more people will be needing organ replacements. The nice thing about kidneys is you have two of them."

Anyone–male or female–can help Jaffee by registering to donate a kidney via Mt Sinai Hospital in NYC. Doesn’t matter if you’re a match or not, or in the same part of the country.

A non-matching donor’s participation through Mt. Sinai enables Jaffee to be paired with a compatible donor already in the National Kidney Registry, a nationwide chain for matching up transplant recipients and donors.

If that’s you, please call Mt. Sinai at (212)-659-8024 for an initial screening. Jaffee's family would be so grateful if, when asked, you give his name and date of birth–Neil Jaffee, March 21, 1943.

Laura June 08, 2012 at 03:07 PM
Suggest you keep the info flowing on how folks can become donors without fear of the "What if xxxxx happens in 20 years and I need my yyyy" . . . came across great blog on Aretha Swift in PA who did billboard ad campaign for kidney donor -- it gives valuable information to allay fears further down the road. Good luck!
Caitlin Nolan June 08, 2012 at 03:14 PM
Great idea Laura, thanks for the info. I'm sure that's a concern for anyone considering becoming a donor.
Yomi Daniel June 09, 2012 at 06:44 PM
Pls, i'm willing to help! Just call me on +2347064333408 or mail me : yekinikehinde33@yahoo.com
Caitlin Nolan June 12, 2012 at 03:11 AM
Yomi, you can always call Mt. Sinai at (212)-659-8024 for an initial screening. When asked, you can give Jaffee's name and date of birth–Neil Jaffee, March 21, 1943.
Sherri donovan September 21, 2012 at 10:40 PM
Neil is a wonderful father, friend and person. My daughter and I have known him and his family for 131/2 years now. He cares deeply about the world and those close to him. Just thought I would let everyone know how special Neil is. You are helping a good soul.


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