Durham, N.C. — It’s been more than four years since Sean Lilly Wilson slid open the mammoth red door to Fullsteam Brewery on Rigsbee Avenue. But the dream that was Fullsteam might never have come to fruition had it not been for his wife, Carolyn. Not just for backing his aspiration, but for literally providing him with the strength to create it. Seven years prior, Carolyn donated one of her kidneys to Sean, whose own kidneys were failing from a disease he’d been diagnosed with when they were just starting their family.
Sean considers himself lucky for receiving his diagnosis when he did, at age 28. He was still working through grad school at Duke, and he and Carolyn decided it was time to up the life insurance policy for their small family, which only included Ella, 2, at the time. A test to ensure he was healthy came back with concerning results, and a biopsy from a nephrologist confirmed Sean had a disease called focal segmental glomerulosclerosis (FSGS).
“Your kidney can function up to about 10 percent of total function, and you still wouldn’t know anything’s wrong with you,” Sean says. “You can feel light-headed or have some water retention, get dizzy, whatever, but not necessarily know what’s going on. And then – boom – you can be in major trouble.”
It was going to be a slowly debilitating disease. Sean spent about six years with gradually decreasing kidney function until it began to rapidly decline. He was placed on the national organ donor waiting list and started dialysis in early 2006.
Carolyn explored organ donation prior to Sean starting his dialysis. The doctors explained to the couple that a living donor is the ideal choice for transplant – the organ would take better and last longer that way.
“The only reason I didn’t jump into it right then was really just the thought of the two of us undergoing major surgery at the same time with younger kids,” Carolyn says. “What if something happens to either or both of us that day? I had to process that on my own and reconcile before saying OK. But that wasn’t very long.”
After months of testing, it was determined that Carolyn and Sean had three out of seven antigen matches, and that was enough. In June 2006, Carolyn gave Sean her kidney, and the doctors let her know that it started working within minutes. The transplant took place on a Monday, and the following Monday, Sean went to the Hurricanes celebration for winning the Stanley cup at the RBC Center.
“I was just jazzed,” Sean says. “It felt amazing to have a functioning body again.” He turns to Carolyn. “You were probably at home.”
Carolyn’s recovery took a few weeks. She had trouble standing up and moving around and would feel queasy at times. “I was at home, curled up in a little ball with a very uncomfortable stomach.”
“And you’re like, ‘I donated a kidney for this?’” Sean jokes.
“No, I was happy,” Carolyn says, smiling. “I was happy that you were feeling great for the first time in awhile.”
It’s one thing to donate an organ to a stranger or an acquaintance. But to be bonded to a person not only by marriage but also through the emotional and physical experiences they faced together before the transplant – that leaves a deeper impact.
“He thanks me,” Carolyn says. “He thanks me, just completely out of the blue. What he went through, not just from the physical standpoint, but emotionally – it was a horrible thing that he had to live through. Being able to give him a quality of life again, make him happy and be able to pursue his dreams, that’s great.”
“I’m able to do this, you know,” Sean says. “I wasn’t a brewery owner who got sick. I was sick and then coming out of it gave me renewed hope to chase my dreams. Fullsteam came out of that trying time.”
Carolyn and Sean have been married for more than 20 years. Daughters Sophie and Ella are now teenagers. Sean will be on anti-rejection drugs for the rest of his life, as well as a few other medications. Every so often, the occasional worry sets in of how much longer he has until his kidney will become a problem again.
“What I need to be mindful of is just the great blessing of this gift in this critical time,” he says, glancing over at his daughters. “I get to be healthy and see them grow up. We have a lot to be thankful for.”
Editor’s Note: Sean and Fullsteam are hosting a Burger Smashdown on Saturday, April 25 from 12:30-2:30 p.m. Burger chefs from Mattie B’s Public House, Tyler’s Taproom, Al’s Burger Shack, Buns and Only Burger will create one of their favorite burger and side duos for guests to eat and vote on. Sean will personally pair his flavorful beers with each burger/side combo (two-ounce pours for each burger). This is a family-friendly event that’s part of Taste 2015, a four-day food festival happening April 23-26. Tickets are available at tastetheevent.com.