Like many couples starting a family, Sean and Carolyn Lilly Wilson had decided it was time to stop counting on youthful invincibility and sign up for life insurance.
“It seemed the responsible thing to do,” says Sean, founder of Fullsteam Brewery in Durham, of the couple’s 1999 decision to contact a broker. “We assumed it would be a good thing for our family. I never imagined it would so completely change our lives.”
That’s because a required routine health screening revealed a complication that would place him on an organ transplant waiting list. It was the start of a seven-year ordeal, beginning with a few prescriptions and building to acceptance that he would need a new kidney.
In the 11 years since, he received one – from Carolyn herself. After that, they have become champions for living donation, especially now, during National Kidney Month.
Otherwise healthy and with no family history of kidney disease, Sean was diagnosed with primary focal segmental glomerulosclerosis, also known as FSGS. The primary distinction means that the condition, which damages the filters inside the kidney responsible for cleaning blood, occurred on its own without a known or obvious cause.
Sean was symptom-free at the time of diagnosis, when he was a 28-year-old graduate student at Duke’s Fuqua School of Business. He later took daily blood pressure medication to manage the slow but steady decline of kidney function, which eventually required dialysis.
Kidney disease is the ninth-leading cause of death in the U.S.
Kidney disease is the ninth-leading cause of death in the United States. Because it can take a long time to move up a transplant list, which relies on organs from a deceased donor, Sean’s doctor suggested the alternative of seeking a living donor. This is not unusual among kidney transplants, as most people have two functional kidneys but can live a healthy life with just one of the fist-sized organs.
If fact, this type of surgery tends to be more successful because the kidney from a living donor usually functions immediately. A cadaver kidney sometimes requires a series of dialysis treatments to jump-start the organ. Also, tests to determine a safe match lessen the chance of organ rejection and make it easier for patient and donor to make plans.
These are among the facts that the National Kidney Foundation promotes each March as part of National Kidney Month. Another is that a genetic link is not required between donor and recipient, allowing complete strangers – or, in this case, spouses – to be compatible donors.
A few relatives offered to be tested for Sean’s transplant procedure, as did Carolyn. She and Sean share a common blood type and an acceptable amount of the antigens needed to induce an immune response in the body. Doctors didn’t completely sign off, however, until she passed a rigorous series of medical tests to ensure that she had no hidden medical issues.
Sean’s health began to deteriorate in 2006. “At one of of his regular visits, there was a major shift in his tests,” says Carolyn, who had never had major surgery or even been under anesthesia. “It was clear that we had to do something.”
Post-surgery, Sean recalls feeling an almost instant surge of wellness. He felt so good that he joined a friend eight days later to cheer the Carolina Hurricanes at their Stanley Cup victory parade.
If we can increase understanding around living donation, and make it easier, then we’re allowing people to live fuller, healthier lives.
Sean Lilly Wilson, who received a kidney from his wife, Carolyn Lilly Wilson
“I hadn’t felt that healthy in a long time,” Sean says. “But it was different for Carolyn, who was in pain. I’ll never forget her sacrifice.”
Sean and Carolyn make a point of presenting community-focused events at Fullsteam, which derives its name from its Chief Executive Optimist’s determination to live life at full steam.
They are especially keen on serving as advocates for kidney health and donor awareness. When Sean’s father died last year, corneal donations served to restore sight in an 83-year-old woman and help four glaucoma patients. They cherish a letter detailing the donations from the involved medical center.
“I decided early on that if our story can help one person, encourage them to be a living donor – or state on their driver’s license that they’re willing to be a donor – it’s the least I can do to say thank you to Carolyn,” says Sean. “If we can increase understanding around living donation, and make it easier, then we’re allowing people to live fuller, healthier lives.”
Want to know more?
For information on National Kidney Month or living donation, visit www.kidney.org.