The story of how Robert Leibowitz met his kidney donor, Richie Sully, through a T-shirt has been going viral for months, but it bears repeating. Not just because it shows the power of social media. Not just because of Sully’s selfless act. But because the two men hope they can make live kidney donation seem so commonplace that one day no one will care about a story like theirs.
Chronic kidney disease had made Leibowitz, a New Jersey father of five, one of the 100,000 people on the waitlist for a kidney in the U.S. His O-positive blood made it much less likely he’d be one of the lucky 19,000 who actually receives a kidney each year — that wait is usually seven to 10 years. Two of his sons have potential kidney issues as well, so a donation from a family member (the most common solution) was eventually ruled out. After four years on the list, he decided to put his background in ad sales to use on a trip to Disney World last September.
“Out of desperation, I said, ‘Shoot, I’m going to be at my favorite place on the planet; I’m going to be reaching hundreds of thousands of people in five different parks every single day; I’ll never get more exposure than this in my entire life,’ ” Leibowitz told Yahoo Lifestyle. He had his 15-year-old daughter, Shannon, design a T-shirt for him that said, “In Need Of Kidney O Positive Call…,” with his cellphone number emblazoned on both sides.
“The only deal I had with my kids, they begged me: ‘Just make sure you wash it every day,’ ” Leibowitz said. Sure enough, fellow Disney-goers Rocio and Juan Sandoval spotted the shirt and asked to post a photo of it on Facebook. Within a day, it went viral with 33,000 shares and hit 90,000 in the first week.
He isn’t the first person to try such an unorthodox method, but only about 3 percent of kidney recipients in 2014 had donations from a living stranger.
“There’s been some evidence that that may be on the rise a little,” Kelli Collins, the vice president of patient engagement at the National Kidney Foundation, told Yahoo Lifestyle. “That may largely be due to social media. It’s easy to go viral if you have the right story out there.”
One of the people who saw the post was Jessica Rutledge, a nurse who was trapped in her Houston home at the time because of Hurricane Harvey. She sent the link to her friend Richie Sully back in Indiana, because she knew he was O-positive.
“When she sent me the link, I thought, ‘The least I can do is call and tell her and make her feel better,'” Sully told Yahoo Lifestyle. “I was like, ‘Hey, my name is Richie. I saw your shirt. I’m O-positive. I have an extra kidney. You’re more than welcome to it. I’m not crazy — I’m sure you have a few of those calls — but I am from Indiana.”
Sully’s was one of 300 messages and texts Leibowitz received. He called every single one of them back to tell them his story, explain the process of kidney donation, and eliminate the “flakes,” as he called them. He gave 50 to 60 people an application, the first step of many to find the right match. Transplant centers want to know everything about a potential donor’s physical and mental health and medical history. Next, they undergo initial blood testing to make sure they’re a match, because being the same blood type doesn’t make that a given.
“Then from there it’s the most extensive physical that a person could ever have,” Collins explained. “They really test inside and out, not just physically but also emotionally, psychologically, to make sure that people are really prepared and willing to donate and do this very grand gesture for somebody else. To make sure their kidney health is good, but also that they don’t have any other diseases or ailments that could be affecting either their lifespan or their risk for potential kidney disease themselves in the future.”
As volunteers were whittled down in this process, Leibowitz said one bright spot was that some people, in their rejection, discovered underlying medical issues they didn’t know they had. Finally, four candidates made their way to New York, one by one, for an even bigger round of evaluation by his transplant team. The first three were denied.
Then it was Sully’s turn. After his testing, he met Leibowitz for the first time, and the two spent the day touring the city.
“I took him around the city — Central Park, the Dakota, Radio City, and Grand Central. Times Square,” Leibowitz recalled. “We figured out that if we had gone to school together or worked together, we probably would have been best buddies. We had so much in common, no awkwardness. We had the same common love of sports, love of family, love of music. It was such a great day.”
In his interviews, Sully doesn’t make a big deal about anything he’s done through all of this. For that first trip, he rode a Greyhound bus for 20 hours from Fort Wayne, Ind., to a hostel in Queens. He took Amtrak for a second testing trip. He set up a fundraiser on YouCaring.com to raise $7,000 to cover his costs.
Meanwhile, heeding the advice of his friend Rutledge, he decided to improve his own health by taking up running and losing 35 pounds. His co-workers at the Home Depot where he works did their part too. “Even before I was matched, I had some of the moms and grandmas at work follow me around with hand sanitizer,” Sully said. “Anytime someone sneezed, they would stare daggers at them.”
While Sully’s dad initially said he was crazy for donating a kidney, and his daughters had a lot of questions, he eventually earned his family’s support. So, on Jan. 18, the men went into surgery at New York-Presbyterian hospital. Within two days, Sully was discharged, and within four, so was Leibowitz.
“I was up and walking 12 hours after I got off the table,” Sully said, still shrugging off his sacrifice. “That’s what I hope this story brings out. … You will live a normal life with only one kidney, and it’s not a big deal to donate yours, but it is a big deal to the life that you save and the family around them. Otherwise, people will think that this is the greatest thing ever, and they will never be a good enough person to do that, and then people will never donate kidneys.”
The National Kidney Foundation is doing its part to make it even less of a big deal for people like Sully, who has to miss about five weeks of work to recover. The organization is supporting the Living Donor Protection Act, a bipartisan bill that’s been introduced in both the House and the Senate to ensure that donors will be included in the Family Medical Leave Act and not be penalized by life and health insurance companies for having undergone this procedure.
“It’s unfortunate that somebody who would do something, give away their kidney, give this huge gift to a stranger or a loved one, then … be negatively impacted by anyone,” Sully said.
Leibowitz is still a bit stunned by how well this all turned out.
“An amazing stranger took an organ out of his body and put it in my body to help me survive,” Leibowitz marvels. “It’s insane. I’ll be thanking Richie for the rest of my life.”
To learn more about live kidney donation, visit kidney.org.
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