While in graduate school at Duke University, Sean Wilson thought it would be prudent to purchase a life insurance policy.
It was 1999 and he and his wife, Carolyn, were expecting their second child.
A nurse came to his home to take his blood pressure, listen to his heart rate and collect a urine sample.
Peeing in a cup proved life changing.
Higher-than-normal levels of protein in his urine prompted further testing that revealed the 28-year-old had a form of kidney disease called Focal Segmental Glomerulosclerosis.
“I definitely was freaked out and concerned and moody and scared and all that stuff,” Wilson recalled of his diagnosis.
Still, he felt fine. The disease had been caught early, and he was immediately put on a medication regiment that helped regulate his kidney function. He had a number of years of relative health following the initial diagnosis, but by 2005 his kidney function was under10 percent.
This was a progressive disease, and that year he also was put on the transplant list.
The longest waitIn North Carolina, waiting on that list can be exceptionally difficult.
“By far the longest waiting lists are for kidney transplants,” said Sharon Hirsch, executive director of Donate Life North Carolina, a nonprofit that seeks to register Carolinians as organ and tissue donors.
Ultimately, Wilson would not receive a kidney off that list.
As the owner of Fullsteam Brewery, the kidney (he only has one) he walks around downtown Durham with was once inside his wife. When it comes to organ transplant, it is preferable to have one from a living donor – in Wilson’s case, his wife proved the best match.
In 2006, he found himself on dialysis. He and his family had to face the reality that his disease was going to require serious intervention if he was going to survive.
The only time Wilson broke down was during his dialysis treatment.
“I’d come home so exhausted, my head spinning and body this weird combination of drained and cleansed,” he said of the dialysis treatment.
“And I only did it for three months. There’s a large population of people whose outlook for a transplant isn’t that great.
“Exhausting as dialysis is, these machines keep them alive. My heart goes out to them.”
Around that time, a number of Wilson’s family members were tested as donors, among them his birth father. Wilson is adopted, but his birth father happened to reach out to him just a few months before his diagnosis.
“Perfect match is kind of something that’s made up in Hollywood,” Wilson said of organ donation.
He had few biological relatives to call upon, and in the end Carolyn’s makeup proved the most compatible.
Still, it was not a decision the couple entered into lightly. They had two children to consider and transplant surgery, like all surgery, posed serious risks.
“My biggest apprehension at the time was, honestly, what happens if something happens to us in the operating room?” Carolyn Wilson said.
Difficult decisionSean Wilson’s nephrologist, Dr. Eugene Kovalik, has seen other couples struggle with this decision, but in the end he has yet to see any forego the donation based on concerns for their children. For the Wilsons, knowing that transplant outcomes from living donors were often better ultimately made their decision easy.
“I’ve known them for almost 10 years now, they’re a great couple,” Kovalik said. “Very supportive of each other.”
In June 2006 the Wilsons, who live in Chatham County, underwent transplant surgery at Duke Hospital.
For Sean, the surgery was rather easy. He had been sick for so long that once he had the healthy kidney working inside of him, he immediately felt better. A week after the surgery, he attended a Hurricanes Stanley Cup celebration.
Carolyn, needless to say, did not make it to that game. Her recovery took quite a bit longer, as is often the case with the donor.
“I was jumping for joy and Carolyn was reeling from pain, so that was the hard thing,” Sean said.
As he healed and adjusted, however, Sean sometimes could be moody and irritable due to steroids he had to take – something the couple was able to joke about being a result of his “female” kidney, Carolyn said.
Eventually life simply went back to normal. Wilson opened Fullsteam in August 2010, and his transplant is not something that limits him on a daily basis, though certain precautions are necessary when it comes to his health.
He takes immunosuppressant drugs to keep his body from rejecting the kidney that is in fact keeping him alive, and with that comes a weakened immune system.
“There have been times when someone has been sick when I’ve looked like a crazy person spraying the Lysol,” his wife said.
Sean Wilson needs to maintain certain diet restrictions as well, such as no raw seafood and no grapefruit.
He happily obliges.
“My wife gave me a freaking kidney, got me off of dialysis,” he said. “The least I can do is honor that by not taking a risk.”
‘Bound by flesh’The average lifespan of a kidney donation is about 15 years, Kovalik said.
Sean Wilson, now 41, was only 35 at the time of the transplant, his wife 37, meaning the couple is aware that his kidney issues are likely not gone forever.
“I’ve had people have two, sometimes three transplants . . . sometimes even four,” Kovalik said.
But “Sean’s got a great kidney and it’s working pretty well.”
“I was – and am – concerned that the transplant won’t last as long as we hope it will; that her great sacrifice would be an ephemeral respite,” Sean Wilson said.
“But we’re six years in, and I feel pretty good.”
“I don’t feel I did some heroic act, I feel like I did what I needed to do,” Carolyn Wilson said.
“Sometimes out of the blue he’ll just look at me and say thank you for giving me a kidney.”
“It’s bonded us in a unique way; we truly are bound by flesh,” Sean Wilson said.
“I respect her more than ever, whether it lasts six years or 60.”