NY Couple Continues Social Media Search for Kidney for Husband

Since speaking to Ditmas Park Patch in June about his search for a kidney, there's something slightly different about Neil Jaffee, 69.

He still exercises regularly, still rehearses with his chorus, the New Amsterdam Singers, and is still continuing his daily routine with his two daughters and his wife, Laura Warshawsky. But now, it's all with an iPhone at his side. 

"I just got it," Jaffee said, lifting up the small gagdet sitting next to him. "My 16-year-old is helping me with it. Before this I had a regular phone that was an actual phone, which I'm told is the Stone Age."

For Jaffee, accepting technology as a daily part of life was slow-going. "I didn't have much interest in social media before this," he said. 

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 of 2011.

The disease takes its time, Jaffee said, noting that he's noticed a drop in energy as of late. 

"My breathing [also] isn't very good and my kidneys keep getting larger," he said.

It's the gradual but steady progression of the disease that has Jaffee searching for matches and reaching out into the depths of social media even more fervently. He maintains 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.

The experience has also been a learning one for Warshawsky, who has become very well-versed in the world of kidney disease and what to do to fight it. "I didn't know about much of this until last October when [we were] introduced to Neil's need."

"There are three types of kidney donor: dead, brain dead and living," she continued. "For a living donor, the testing is extensive. It takes three to five months. We had two family friends eliminated because of [pre-existing or the chance of pre-existing conditions]."

Warshawsky said what many people don't realize is that if they've been approved to be a donor, it's because they're healthy enough to be a donor.

"I think that some people don't know that if they were approved, they were approved because of health," she said. "And if in the future, if they needed a transplant themselves even 30 years from now, they go to the top of the list. That match would need to be found."

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, he said.

"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.

Warshawsky has also been playing a part in the social media search, reaching out to groups she is affiliated with the spread the word that her husband is in need of a kidney. 

She helped to organize a speaking engagement for Jaffee, who spoke at an Art for Life meeting in early November. "The number of people who are donating or connected to this particular project [extend] accross all economic and age brackets," she said. "It's a use of social media. If each woman has 50 contacts..."

Warshawsky is also looking into organizing a blood drive that would benefit an organization such as the Red Cross and be held in Jaffee's honor. "It's a first step," she said, noting this would give people something to do while spreading the news of Jaffee's need. 

Still, while as much that can be done is being done to improve Jaffee's chance to find a donor, he said it's important to remember to continue living life. 

"The day to day can't be preoccupied with this," he said.

"You have to find things that make you happy," he continued, and he can't help but proudly boast of his older daughter's upcoming performance with the New York Philharmonic and Josh Grobin, as well as his younger daughter's upcoming Bat Mitzvah. "You have to find things that give you joy," he said. 

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.

Editor's note: This article originally was published by Ditmas Park Patch in Brooklyn, NY.