ROLLINSFORD, N.H. — An hour before bedtime, every night, Jack Carroll plugs himself into a dialysis machine and tries to fall asleep. Over the next eight hours, nearly 170 ounces of fluid cycles though his body, removing toxins his failing kidneys leave behind.
This nightly routine is Carroll’s latest treatment for Dent’s disease, a rare genetic condition affecting only a few hundred families worldwide. Several men in Carroll’s family have died from the disease, which causes kidneys to age prematurely.
Carroll, 32, is battling stage 5 kidney failure. He can no longer work, and is hoping to get a kidney transplant. For now, dialysis keeps him alive.
“People with stage 5 renal failure have three options: They can go on dialysis, they can get a transplant or they die,” he said. “Those are the only options.”
Carroll’s friends and family have organized a fundraiser from 4 to 7 p.m. Saturday, July 8, at American Legion in Rollinsford. The benefit dinner will have food, music and raffles donated by local businesses. Tickets are available at Rollinsford Town Hall and at the door. They cost $10 for adults and $5 for children.
Carroll, who grew up in Berwick, Maine, has deep ties to the region. His family once operated a convenience store and deli in Rollinsford, and he is well known for classes he teaches through Wentworth Greenhouses. His mother is from the Redden family of Dover, and his uncle was former Strafford County Sheriff Frank Redden.
Family research has shown Dent’s disease came from the Redden bloodline. It killed his grandfather, Paul Redden, at age 30 and Frank Redden in his early 50s. Carroll’s brother, Patrick, also has Dent’s although it is advancing more slowly.
Carroll’s diagnosis did not come as a surprise. At age 3, complications from an E. coli infection led to acute kidney failure. He recovered, but the incident left his kidneys weakened. Dent’s disease, identified through genetic testing, has further eroded their capabilities.
In January, he learned he had stage 4 kidney failure and in April he learned it had worsened to stage 5 — which is considered “end stage.” Carroll’s kidneys are 90 percent less effective than someone with healthy organs.
“I feel in some way fortunate that I have known all my life,” he said in a recent interview. “It has caused a lot of stress, but unlike people who find out about it later in life I have known and had time to prepare.”
Nightly dialysis treatments filter toxins from his blood his failing kidneys no longer remove. The liquid enters and exits through a tube inserted into the lining of his abdomen. Without the treatments, he would likely die within six months.
Dialysis keeps him alive, but it also robs his body of nutrients. Sleep is fitful at best. Outwardly, however, there are few signs of serious illness. “Kidney diseases are very shadowy diseases,” he said. “Part of it is you don’t look sick.”
Carroll has worked at Wentworth Greenhouses for seven years but stopped working following his stage 5 diagnosis. Since then his family and partner, Shane Sprague, have helped with bills and medical expenses.
Carroll has health insurance bought through the Affordable Care Act, or Obamacare, exchanges. Before passage of the law, health insurance was difficult or impossible to get due to his pre-existing kidney condition.
Carroll has many relatives nearby who have known about his condition for some time. That doesn’t make it any easier to watch him struggle.
“Jack has always had a special place in all of our hearts,” said his aunt, Kate Nesman, who is the Rollinsford town clerk. “Jack is our little leprechaun. He has a continuous smile — even when he was sick at 4 until now — he will greet you with a beautiful smile.”
Patrick Carroll said his brother has demonstrated courage and strength despite his serious condition. He believes Jack’s “life of good deeds” will circle back.
“It is hard to watch your younger brother feel like his options are limited because of a disease,” Patrick Carroll said, adding that their mother, Cheryl Carroll, is the family’s true hero.
Carroll will ultimately need a kidney transplant to survive, although he can likely stay on dialysis for years. These days, he spends much of his time learning the complicated transplant process and working to get on the list.
A successful transplant, if it ever happens, is no panacea. Even in a best case, the organ will last about 20 years. It also means he can never work with plants again due to potentially life-threatening bacteria in soils.
He’s not worried about that now. Given his family history with Dent’s, he’s committed to breaking the cycle of premature death. “I want to be the first person in my family ever to survive this.”
Information from: Foster’s Daily Democrat, http://www.fosters.com