TACOMA, Wash. – It was the moment that Vince Villano, 41, had spent his life dreading. From his hospital bed at St. Joseph’s Medical Center last Thursday, he watched as his blood was whisked through a newly implanted chest tube and into a dialysis machine, where it was cleaned and then returned to him.
For Villano, who has Polycystic Kidney Disease, it was day one of dialysis. Since he was diagnosed with the genetic kidney condition 11 years ago, he’d been hoping against all odds that he could avoid spending hours every week tethered to a machine to do what his kidneys no longer could. But last week, tests showed that he was at the point of no return. Toxins were building up in the Army veteran’s body and to survive, he’d have to start dialysis.
But, as the dialysis machine whirled, Villano knew that instead of facing years on the treatment as many do, for him it was temporary.
He needs a new kidney and he knows exactly where it is: “Right now it’s walking around drinking decaf coffee,” he joked from his bed.
Specifically, it’s inside Justin McNeil, another Army veteran and a man who, against all odds, became his friend, and, on Dec. 26, will become his kidney donor.
It all started with a cup of coffee.
For years, Villano’s routine had been to start his day with a stop at his local Starbucks before he headed to work at the Farmers Insurance agency he owns. On many days, Nicole McNeil, a barista at the DuPont, Wash., Starbucks he frequented, was the one who served him. While she knew his usual order, she didn’t know much else about him.
“I knew him as Trenta Vanilla Sweet Cream Cold Brew, full pumps,” she said.
But one day, about two years ago, he seemed particularly down. “I asked him, ‘What’s going on, Vince?’,” she said.
Deflecting, he muttered that it was a long story and he knew she didn’t have time. But, in a split-second decision that would be life-changing, she said she was off in a few minutes and suggested they talk before she had to go pick up her kids. “As a barista we can really tell when our customers are sad and when they’re hurting and so it was neat to have the opportunity to talk with him,” she said.
He decided to be honest. He talked. And she listened. Reallylistened.
He told her about the genetic disease that had affected each generation of his family as far back as he knew, reaching back to a great grandmother who died of the condition. He told her about how at age 30, he learned he had it too. And how, Villano, who served eight years in the Army before being discharged as a sergeant, who had been an emergency medical technician – a man who was used to helping others, now needed help himself.
“When I was first diagnosed, I felt like, ‘Well, I’m dying’,” he said. “It was not my first encounter with mortality. I had some situations in military. But this was really out of my control. There’s nothing you can do. It’s kind of black cloud that hangs over your head all the time.”
The disease had transformed his once-healthy kidneys into organs filled with cysts and swollen to the size of footballs. They were beginning to adhere to his other organs.
He was put on the waiting list for a kidney transplant but “a typical wait time is four to five years,” he said. “A lot of people die on the list.”
He’d always thought he had more time. Most of the people in his family didn’t become critical until later – their 50s or even 60s. At the time, he was just 30 and his daughter, whom he’d raised as a single parent from the time she was 2, was still in her teens.
He finished his coffee and he and Nicole went their separate ways.
That night, in bed, she told her husband, Justin McNeil, about her day and about her conversation with her customer and how he needed a kidney.
He said, “I have a kidney. He can have mine,” she recalled. She was stunned. She’d once had to convince her husband to register to be an organ donor after he died. He’d never really talked about it since.
But something about Villano’s story stirred him. Maybe it was that they were both Army veterans or dads. Or maybe, it just seemed like the right thing to do.
“I mean, before he knew anything else about the man that was his first thought,” she said.
Nicole McNeil began to invite Villano to family events, including a Memorial Day dinner to honor deceased soldiers they had served with. And Justin McNeil and Villano somehow just clicked, falling into an easy friendship. Villano got the three McNeil kids, ages 6, 9 and 12, into mixed martial arts, like he used to do himself when his body was healthy and he was made of muscle. Soon Villano was spending holidays with the McNeils and had become part of the family.
“It’s like brothers,” said Justin McNeil.
McNeil hadn’t forgotten his initial offer. He knew that chances were slim that he’d be a match for Villano but thought maybe he could donate as part of a “kidney chain” that would help Villano move up the list faster.
To his surprise, tests came back showing he was as close a match to Villano as possible without the two of them being related.
As Villano’s health declined, doctors picked a date for the transplant – Dec. 26, 2018, the day after Christmas, Justin McNeil’s 36th birthday.
In recent months, life has gotten smaller for Villano. He doesn’t complain, but copes with daily pain, written on his face in the circles under his eyes. Many days, it’s all he can do to go to work and then come home and crawl into bed.
He remembers another version of himself, back when he used to weigh 240 pounds and his main hobbies involved working out.
“I look in the mirror now and I don’t recognize the person I see looking back,” he said. Now, at 6 feet 2 inches, he finds it hard to maintain a weight of 195.
This week, a few days after being hospitalized for in-patient dialysis, he’s back at work, almost through force of will more than anything. “I can’t sit around,” he said. “It drives me nuts to admit this thing can beat me.”
The list of what he hopes to be able to do after he gets his friend’s kidney is endless. On the short list is to eat steak, which he hasn’t been able to eat due to medications that make his stomach sensitive. He’d love to live long enough to see his children, Savanna, now 20, and Kanton, 18, someday have children. He also wants to use the time and health the new kidney will give him to help others, just like Justin McNeil.
Getting a kidney transplant will be “like night and day” for Villano, said his nephrologist, Dr. Partha Raguram at CHI Franciscan in Tacoma. “It’s very documented in literature the improvement in everything from cognitive ability to physical energy to the ability to have gainful employment and a productive family life.”
People who have dialysis three times a week have about 30 percent kidney function, he said. But when you have a transplant, you get nearly 100 percent function.
Raguram (whose patients call him “Dr. Ragu”) understands more than most what a transplant means to someone with Polycystic Kidney Disease like Villano. The genetic condition also threads through his own family and he has seen family members die waiting for a kidney. In the United States, about 80,000 people are on a waiting list for a kidney at any point, he said. Only about 16,000 get them each year. The number of unrelated living donors, such as Justin McNeil, has increased over the years from about 1 percent in 1996 to about 26 percent now, he said.
Justin McNeil’s kidney should last Villano at least another 20 years, Raguram said. “It’s truly the gift of life – of a second life.”
Justin McNeil, who began teaching seventh-grade English after leaving the Army as a sergeant, and now serves in the Army National Guard, is less sentimental about donating a kidney. For him, it was simple. Villano had a need and he could help. So he did.
“I felt like (offering to donate) was a pretty easy answer,” he said. “There wasn’t a lot of thinking about it. It was let’s do this. I can do that if I got two, right? I can give one so that was it.”
But it’s not something most would do for a stranger, said Villano.
“I would say that there are not many people that would doing what he’s doing,” he said. “I don’t know that I would do it.”
Justin McNeil is just that kind of a person, said his wife. “He cares about people almost more than any anybody I’ve ever met,” she said. “He’s the kindest person I’ve ever met. So, when he said, ‘I’ll give my kidney,’ it seemed like, ‘OK, sure. Yeah, you will.’”
He sees it as part of simply being a responsible person on this planet.
“But in the end, it really is a life-or-death question. And so it makes it a non-question,” Justin McNeil said. “We’re all called to give and attempt to make a difference and to do it unselfishly and if you can do that, if you can do your small piece and just be satisfied with it. The point is just to simply attempt to make a small difference and then you’ll probably find that it’s bigger to somebody out there.”
He deflects any concerns about his own health to focus on the sacrifice others around him will be making as he recovers. He won’t be able to pick up his kids for a few months while he heals, and he’ll miss some time working in the classroom. But in the end, “this is it’s not a sum zero equation. There’s nothing about it that I walk away with less and he walks away with … with a lot more. And I’m going to come back up to whatever level of health that I had. I’ll just carry on with my life but he gets 20 good years out of this.”
A true family bond
Like true brothers, Villano and Justin McNeil’s relationship is rooted in a lot of teasing. On a recent evening at the McNeils’ house, they were comparing notes on going through caffeine withdrawals and having to switch to decaf coffee in the weeks before the surgery. (“It was terrible,” Justin McNeil said.) And Villano ribs him about being accident prone, like when McNeil cut off the tip of his finger when making a project, and the unlikely summer when McNeil repeatedly stepped on nails when doing yard work. He showed a photo he took when he was there to document it when a wasp stung McNeil’s lip, causing it to swell well beyond Angelina Jolie proportions.
“I tell him ‘Hey, just don’t mess up my kidney,’” Villano said.
If something happened, and McNeil hadn’t been able to donate his kidney, they’d still be close friends, Villano said. That friendship is the true gift. Villano said the McNeils are as much family to him as his biological one.
For their part, the McNeils say Villano has felt like part of their family for so long, they can’t even pinpoint when it happened. He’s someone they know they can rely on, whether it’s picking up their kids or sitting in their kitchen making mashed potatoes for Thanksgiving dinner, as he did last month.
“I’m not the guy giving him a kidney and he’s not the guy receiving a kidney, he’s just Vince,” said Justin McNeil. Still, that’s not going to stop him from taking advantage of a fee pass to rib Villano about his kidney. “I can make fun of him and just be like, ‘I’ll take that back.’”
Next week, Villano and the McNeils will spend Christmas together at the family’s DuPont home, opening presents under the tree. And the next day, when Justin McNeil’s kidney is transplanted into Villano, life will begin anew for people who began as strangers, and in the end, became true family.
“He feels like part of the family. It wouldn’t quite feel like a holiday or get-together without him,” said Nicole McNeil, the barista who put this all in motion. “Every stranger is a potential friend,” she said. “Not everyone is going to turn out to be one, but you never know. He’s ended up being like a best friend.”
Update, Wednesday, Jan. 23: Nearly a month after surgery, Vince Villano’s new kidney is functioning better than even expected and he’s returned to work. For the first time in a long while, his appetite has returned, his energy is coming back and the circles from fatigue and stress that had been under his eyes have faded. Donor Justin McNeil is also well on his way to recovery and has returned to teaching in his classroom. The two continue to be fast friends, scheduling their follow-up up medical appointments at the same time so they can drive to them together.