Football-sized kidneys could kill this Toms River man who needs a donor. Can you help?
The typical kidney is about as big as a fist. John Cusmano’s could swell to the size of footballs.
The 65-year-old Toms River resident has polycystic kidney disease, an inherited condition that can cause kidney failure. It’s killed five of his uncles and an older brother. Another brother, Rick Cusmano of Lyndhurst, underwent a transplant after his kidneys grew to weigh more than 30 pounds apiece due to cysts that balloon and sometimes burst. It was like lugging around four bowling balls.
“Can you imagine?” Rick Cusmano said. “Nobody believes you until you show them the pictures.”
So far John has avoided the worst and is not on dialysis — yet. But that's probably coming. Last month, NewYork-Presbyterian/Weill Cornell Medical Center in New York City declared him medically cleared for its living-donor transplant list. He’s seeking a match with a B or O blood type. With so much kidney disease in his family, he has to look outside for help.
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“It’s scary that at any time, he could go into complete kidney failure,” his wife Jane Cusmano said.
The condition slows him down. John retired recently after 40 years in the heating and air conditioning business.
“It’s uncomfortable,” he said. “You have to lay down a certain way. You can’t do a lot of running around.”
John stays active as best as he can, gardening and doing work around the house — though Jane won’t let him lift anything. He’s on a strict diet.
After watching what his brothers went through — Rick was on dialysis for five years — John has plenty of motivation to keep the condition from progressing. He’s done well so far after being diagnosed with polycystic kidney disease in his late 40s.
“There are so many of us who need kidneys,” John said. “If you look at the amount of people in the dialysis centers, it’s unbelievable.”
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Close to 100,000 people in the United States are awaiting a kidney transplant, with a typical wait window ranging from three to five years. In the meantime, life is on hold.
“I’m debating whether or not to get a job,” Jane Cusmano said. “But if I get a job and in two months he gets his kidney, I’ll need to be home with him, and going back and forth to New York with him for treatment.”
The father of two grown sons, John Cusmano volunteers each spring as a handyman at Resica Falls Scout Reservation in East Stroudsburg, Pennsylvania. As a former Boy Scout, it’s something he’d like to continue, kidneys permitting.
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“I keep busy, trying not to think about it,” he said of his disease. “But it’s there.”
He’s enlisted the assistance of the Flood Sisters Kidney Foundation, a New York-based nonprofit that helps those in need of kidney transplants. If you're interested in potentially saving a life by donating a healthy kidney, the foundation can be reached through its website at https://floodsisterskidneyfnd.org.
Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.
This article originally appeared on Asbury Park Press: Toms River man needs kidney transplant to save him from family disease
