July 30, 2010— -- John Nakata is only 37 years old, but doctors have told him he has only two years to live.
Plagued by a number of illnesses, Nakata is searching for a kidney donor in hopes that he will be able to see his 5-year-old son grow up.
Rather than sit and idly wait for his name to come up on a national list, Nakata and his family in Tamaqua, Pa., have turned to YouTube in search of a good Samaritan. However, some experts say seeking alternate means to find a donor is unfair -- that it is equivalent to skipping the line.
During the video, Nakata, his wife and his sister describe his illnesses, his need for a kidney, and his desire to see his son grow up. The video looks like it was shot in the family kitchen with what appears to be a picture of Nakata's son on the refrigerator behind him.
"I'm way too young to die and leave [my son] alone," Nakata says in the video. "My son means everything to me. He's the one thing keeping me here."
Nakata is diabetic and anemic and suffers from hypertension, coronary artery disease and renal failure.
"I go to dialysis, to a clinic, three days a week -- Tuesday, Thursday, Saturday -- and they hook me up to a machine to clean my blood for four hours each time on there," Nakata says in the video.
He has been on a national kidney-pancreas list for nearly four years, but recently was taken off that list because doctors said he is too sick to undergo the double transplant surgery, which takes about nine hours. Instead, he has been moved to a kidney-only list. His time on the previous list will be used to determine his place on the new list.
Family and friends have been unable to provide a match for Nakata. He has type O-negative blood, which means he can only receive a kidney from someone with type O blood.
"It makes it more complicated," his wife, Sherry Nakata, told ABCNews.com.
Networking to Find a Donor
While doctors have predicted that Nakata has less than two years to live, the average waiting time for a kidney is 1,121 days, or more than three years.
"They said we need to find a living donor and we need to start networking right away," Sherry Nakata said.
They began with local news outlets, and then her sister-in-law suggested that they make a YouTube video.
"I never in a million years thought it was going to turn out the way it did," she said.
Sherry Nakata said the response has been "overwhelming."
"I was just checking my voicemail and my box was full," she said.
The Nakatas also received more than 60 e-mails from people around the country offering to donate a kidney.
Sherry Nakata referred the e-mails to the doctors who evaluate potential donors. They have already identified some promising leads.
Despite the response, nothing is definite.
"It's a lengthy process," Sherry Nakata said. "You have to be prepared in case it doesn't work out."
The majority of donated kidneys come from cadavers. Roughly 40 per cent come from live donors -- close family members or friends. Only a small number of those live donors are found through social networking.
"Rarely, we have those altruistic donors who just want to donate an organ to someone to help save their life," Spry told ABCNews.com.
Patients have been known to use other means, like Nakata's YouTube video, to appeal for donors.
"People advertise on Craigslist," Spry said.
Others have been known to put up fliers or advertise around their towns.
One woman who donated a kidney altruistically has put together a website encouraging others to to do the same.
Matthew Holt, co-founder of Health2.0, which runs a conference centered on "user-generated health care," said he heard someone had recently found a kidney donor through Facebook.
"I think it's part of a larger trend of people looking for a wider community of friends of friends of friends that can help them with their health issues," Holt told ABCNews.com.
Though using social networking sites or other digital means to find a donor may seem enticing to patients and family members, Spry said it brings up touchy ethical issues of who deserves an organ more.
"They're trying to step to the front of the line," Spry said.
Purchasing organs is against the law in the United States for that reason, Spry said.
Dr. David Cronin, associate professor of surgery and director of liver transplantation at Wisconsin Medical Colleged, disagreed.
"There's not necessarily a fairness yardstick that we can apply to this," Dr. Cronin told ABCNews.com.
"It's all not fair. All these people need an organ to be transplanted and they're being resourceful within the rules that govern transplant," he said.
In fact, Dr. Cronin suggested that finding donors through alternate means like the Nakatas are trying to do is actually doing good for others waiting on the list.
"It's a win-win," Dr. Cronin said. "He comes off the list and the one behind him moves up the list."
The national registry introduces an element of everyday fairness that people can understand. Yet, Spry acknowledged that the list is flawed and could do a better job weighing factors like how long the donated organ could help someone, time spent waiting and other aspects of individual situations.
"They're trying to come up with a fair allocation system that takes into consideration all of those things," Spry said.
That system is yet to come into place, so the Nakatas are trying their hardest to find a match so Nakata can see his son mature.
"What we're doing here is for my son," he said. "I don't want my son to grow up without a father."
If you want to help John Nakata, you can contact Sherry Nakata at 570-436-5114 or send an e-mail to Donate2John@gmail.com.