JUNIATA TWP. – Life for Tom and Carol Hess may not seem uncommon in their pleasant home in the hills along Hardy Road in Tuscola County’s Juniata Township.
The husband and wife of 33 years, however, are no ordinary people in the world of organ donation. Each of the Hesses has donated a kidney, something hailed among those observing National Donate Life Month in April.
It’s not common for both spouses to donate kidneys, according to Marcie Gerlach, senior communications manager of the National Kidney Foundation of Michigan, based in Ann Arbor. “I would assume it’s unusual – it’s definitely not common, and I don’t know that I’ve ever heard of it before, but I’m sure somewhere in the country, it’s happened,” Gerlach said.
National Donate Life Month encourages Americans to register as organ, eye and tissue donors and to celebrate those who have saved lives through the gift of donation. As of Jan. 11 of this year, 121,678 people awaited organ transplants in the U.S., and 100,791 of those awaited kidney transplants, according to the National Kidney Foundation.
Carol Hess grew up in Lansing as one of five children in a family dealing with polycystic kidney disease, or PKD, an inherited disorder in which clusters of cysts develop in the kidneys. Carol Hess said she and her siblings “have a 50/50 chance of getting it,” adding she doesn’t have the disorder.
“As you get older, the cysts get bigger and bigger, and/or you get more that start,” she said.
Three of the five siblings have received kidney transplants. Carol Hess ensured one would happen, giving a kidney to a sister in 2007.
Tom Hess donated a kidney to a nephew – on his wife’s side of the family – in 2015.
Tom Hess, 56, a farmer, said he and his wife’s status as dual donors isn’t widely known.
“We didn’t go out of our way to share it with anybody, but there were friends that knew and people at church, so they did have a prayer for me, and showed thankfulness when we got back,” he said. “That’s not the reason we did it. But you do it when you realize there’s that many people waiting, statewide and nationally, and what a difference you can make.”
Functioning kidneys filter wastes from the body, Gerlach said. When kidneys don’t work, the wastes accumulate in the blood and the patient requires dialysis to remove the wastes.
About 15,000 Michiganders are receiving dialysis in Michigan, Gerlach said.
In the U.S., 4,761 patients died while waiting for a kidney transplant in 2014, according to the National Kidney Foundation. Another 3,668 people became too sick to receive a kidney transplant.
Tom Hess said his donation of a kidney gave a new lease on life to his nephew, who had been on dialysis and away from his job.
“Life had gotten really rough for him,” Tom Hess said. “He couldn’t work.”
Though the nephew wasn’t a blood relative of Tom Hess, the donation and transplant last year illustrate a point that Gerlach stresses for the National Kidney Foundation of Michigan.
“Over the years, as new technology has come out and different research has been done, it’s easier now to understand what makes a good match, and that no longer has to be a blood relative,” Gerlach said. “You can get a good match from a stranger.”
Kidney donations from living donors – as opposed to cadavers – are becoming more commonplace, Gerlach said.
Any donor considering a living donation of a kidney may visit the following link: http://www.nkfm.org/help-information/living-organ-donation.
An “altruistic” donor – someone expecting nothing in return for his kidney – can set off a chain of surgeries benefiting scores of people needing kidneys. In 2015, according to The New York Times, the donation of one kidney by an altruistic donor led to a chain reaction of dozens of surgeries providing recipients with kidneys as experts used software and computer algorithms to find the best medical matches for those in need of such an organ.
Carol Hess, 56, global category manager in the purchasing department for Dow Corning Corp. based in Bay County’s Williams Township, learned the hard reality of polycystic kidney disease, or PKD, at about age 10.
“My dad was in the hospital for about three weeks before he died, and he was really sick, so that’s when I became aware of it,” Carol Hess said.
The disease exists on Carol Hess’ father’s side of the family, and several years after her father’s death, her uncle received a kidney transplant, surviving for decades afterward.
“I had never heard of PKD until I met Carol, but I learned from her,” Tom Hess said. “I learned of her dad passing due to the disease, but her uncle surviving successfully for nearly 40 years after a kidney transplant.”
Twenty-two years ago, Carol Hess’ brother received a kidney from his wife. Carol’s brother “is doing great” today, Tom Hess said.
Though Tom Hess donated a kidney last year to his nephew, it wasn’t the first time Hess saw someone struggle while waiting for a kidney. Joel Oldenburg, husband of one of Hess’ teachers at St. Michael’s Lutheran School in Richville, died after several kidney transplants. The late Oldenburg’s wife, now Elaine Keinath, has since retired from St. Michael’s.
In 2007, Carol Hess underwent an array of medical tests before her kidney donation to her sister.
“We walked away (following the transplant surgery) about nine or 10 years ago now and I felt a little bit left out,” Tom Hess said. “I felt OK with it, but I told Carol my feelings. It was like I wasn’t part of that process other than bringing my wife home from the hospital.”
After three of Carol Hess’ siblings received kidneys – from three relatives – all six of the family members began gathering regularly.
“Every year or two we get together, usually at a fun place, and we have a lot of fun, and we jokingly call it the ‘kidney swap meet,’” Tom Hess said.
“It was all cumulative to me. When my nephew started to need a kidney, right away, I was thinking ‘I was very blessed,’ because my kids don’t have to worry about that. My grandchildren don’t have to worry about it, because (PKD) is not going to pass through Carol.”
About 600,000 people in the U.S. have PKD, which is the fourth-leading cause of kidney failure, Gerlach said.
Tom Hess said that following his surgery last fall when he donated a kidney, he was home from the hospital in two days, and back at work over the next few weeks, though work days were “very slow at first.”
“The recovery time for living donors has become less and the surgery can be done laparascopically (through the abdomen), meaning the person doesn’t have to be cut open all the way (as in the past), and it’s not as invasive,” Gerlach said.
Carol Hess said she and her husband had a reason for speaking out about their kidney donations.
“We’re not doing it because we want to be famous,” Carol Hess said. “We want to encourage other people to consider that donation because life (for a living donor) goes on, and it makes you feel good afterward to know that you did give this gift of life to somebody else, whether they’re a family member – and you love ’em – or it’s just somebody where you made their day, if you’re altruistic.”
Carol Hess said that with three of her siblings and her nephew living well following kidney transplants – and the fact her late uncle was healthy for decades following his transplant – the benefits of kidney donation are apparent.
“I think we have enough examples in my family that there’s been success with it, so why not (donate)?” Carol Hess said.
Outcomes have been good for family members donating kidneys, too, she said.
“My uncle, when he got his kidney, it was a cadaver, but then my sister-in-law donated to my brother and you realize ‘OK, she doesn’t feel any differently,’” Carol Hess said. “It kind of reinforces things.
“You think ‘Shoot, nothing really happened with your life, that’s fine.’ As a donor, you get a little bit more confidence.”
Tom Gilchrist is a staff writer for The Advertiser and can be reached at firstname.lastname@example.org