In a room that once served as his office, Alfred Barbieri tore into a hefty cardboard box containing a tangle of medical tubes and a bag of dialysate fluid, which is used to draw toxins from the blood. He demonstrated his almost daily ritual of in-home hemodialysis, the standard treatment for kidney failure. He opened the cycler of his dialysis machine, inserted a filtration cartridge and affixed the transfer tubes to the corresponding ports. He input his weight, blood pressure and other data on an iPad hooked up to the appliance, and sat in a leather armchair as nine pounds of fluid were pulled from his body.
He does this for four hours a day, five days a week.
“I don’t know if you know anybody who’s ever been on dialysis,” he said. “You have to live it to know what it is. It’s an impossible task.”
On Father’s Day 2007, Barbieri, of Glenwood Landing, awoke in pain at 1 a.m. and urged his wife, Deborah, to take him to the hospital. Two days earlier, he had seen a doctor who believed he had a urinary tract infection.
After undergoing a CT scan, Barbieri was diagnosed with kidney cancer. Later that summer, doctors performed a nephrectomy, removing the organ, and despite frequent follow-ups and doctors’ visits, Barbieri continued to show up for work at the Glenwood Fire Company, where he has volunteered for nearly 40 years.
Barbieri, 55, joined the department in 1982, and served in many offices and on many committees during his tenure. He was lieutenant for seven years and a trustee for 10. Because of his loud, rambunctious, fun-loving attitude, he was nicknamed “Bubba,” though his friend and fellow firefighter Tom Granieri, of Glen Cove, said he believes Barbieri came to the firehouse with that moniker. “In his younger days he was a hulk of a man,” Granieri said, “and you could always get a laugh out of him, or vice versa.”
Barbieri also played bartender at the firehouse. “Any time there was a party or an event, everyone would come up to the bar to see Bubba,” Barbieri said with a heartened chuckle.
“If you know Al, that’s him,” Granieri said, referring to his friend’s infectious laughter, “and now’s the time he needs [laughter] the most.”
After his nephrectomy, Barbieri’s blood work began to show some signs of deterioration in his functioning kidney. He was referred to a nephrologist who prescribed different diets and a procedure to help improve the health of the organ, but despite the efforts, its vitals continued to decline.
Barbieri began dialysis in September 2016, when he was working as a fire inspector for the Town of Oyster Bay. Every other day he would start work at 6 a.m. so he could drive to a treatment center in Port Washington afterward. He would typically arrive home around 8 p.m. “It would wipe me out for the next day, and as soon as I started to feel better I’d have to go back and start the cycle all over again,” he said. “It just wears you out to the point where you can’t function.”
On his first day of dialysis, he was listed at Stony Brook University Hospital to receive a kidney transplant, and is now in the process of getting listed at a hospital in New Jersey. The wait time for a cadaver kidney, he said, is three to five years, but receiving a kidney from a living donor is “the best option.” “The survival rate for people with a living donor is a lot longer,” he said. “You can go 15, 20 years with a living donor; eight to 12 with a cadaver.”
Fliers appealing to potential donors have recently circulated around town and on Facebook. And while the search continues, Barbieri has the support of his wife; his daughters, Angela and Julia; and his cat, Honey, who sits on his lap during treatments, braving the unsettling sounds of the hemodialysis machine. “She keeps me company when I’m alone,” he said with a smile.
He also has his friends at the firehouse, who have been an unwavering source of support for his family. They shovel his walkway when it snows; they move supplies into and around his home; they drive out of their way to pick up his medical equipment.
They even made sure he had a chair to sit in. The leather armchair in Barbieri’s home treatment center was donated by the Glenwood Firemen’s Benevolence Association, which helps local firefighters in need. “Al has given so much to the community through the firehouse,” Granieri said. “He’s one of the most deserving guys I can think of, and assistance from the community is what he needs right now.”
Anyone interested in helping with Barbieri’s search for a kidney can call Stony Brook University Hospital at (631) 444-2209 and ask for the living donor coordinator. What’s almost as important as finding a donor, he said, is spreading awareness of the disease.
“This exists, and people should try to understand more about it and what people go through,” he said. “And the term ‘be well’ makes me nervous. I prefer ‘stay well.’”