In school, we’re taught that our kidneys look like beans, filter out waste, toxins and extra fluid from our body and are located below the rib cage on either side of our spine. After learning about them, we forget that they’re there. But for 29-year-old Jack Guida of Massapequa, kidney health is all he can think about.
“I was born with Alport syndrome, which is a rare kidney disease. It destroys your kidney function and damages your hearing, so I wear bilateral hearing aids,” said Guida. “By the age of 12 I was in end-stage renal failure, which means my kidneys completely shut down.”
Guida said he was lucky though, as he was only on dialysis for four months before he found a donor.
“That was because of my mother,” he said. “She broadcast it. The town, the church; she let people know I needed [a kidney] and I got lucky.”
After hearing of Guida’s story through a mutual friend, a woman in Virginia who had just lost her son in a car accident, got in touch and agreed to donate her son’s kidney.
Guida successfully lived with his new organ for 10 years.
“Excruciating pain,” he said as he recalled the day his body rejected his donated kidney. “I remember it so well. I thought it was stomach pain, but it kept getting worse and worse and there was no way I was tolerating it any further.”
For the past six years Guida has been on dialysis and is registered with the Montefiore Einstein Center for Transplantation. As an A blood type, he can receive either A or O blood type donations, regardless of positive or negative. He is currently on the New York State waiting list, which he said is anywhere between five and seven years long, for a kidney transplant.
In the hopes of speeding up his wait time, Guida’s transplant coordinator, Helen Rominiecki, recommended he contact the Flood Sisters Foundation. Jennifer, Cynthia and Heather Flood, the president, public relations director and vice president of the foundation, respectively, have now set out to find the perfect donor for him.
The sisters founded their organization after they lived through the struggle of finding a donor for their father during the summer of 2007. The trio used Craigslist to put an ad out, and after a high school acquaintance recognized their name, took on their story and gave them a radio interview, they received contact from thousands of people who wanted to help.
Since its inception in 2008, the nonprofit matching service has found a donor for 10 patients.
“We wanted a better way for people to get donors without the crazy waitlists,” said Jennifer Flood. “We want to make sure everyone gets transplanted. It’s not about quantity, it’s about giving them an intimate experience.”
Now Guida is working with the nonprofit group to find yet another donor to provide him with a kidney. For a fee of $2,500 that goes toward screening donors for both physical and mental health and administrative expenses, he is registered with the foundation and is hopeful that they’ll successfully find him a source of new health.
“I was a little skeptical at first, but I was like, ‘what do I have to lose other than some money?’ What’s a couple thousand dollars if it can get me my health back,” Guida said.
Through social media posts and reaching out to news outlets, the Flood Foundation is working to spread Guida’s story.
“It’s just been difficult,” said Guida, who has also dealt with the loss of both of his parents. “I was healthy when my mother passed away, but then not too long after that I got sick again. Then my father got sick shortly after that and passed away.”
As a kidney patient, Guida is on a restricted diet and needs dialysis three times a week.
“Treatment wears you down, it’s tiring. You can’t eat what you want, can’t drink as much as you want,” he said. “It’s very, very frustrating. I think the hardest part for me really is [not being able to] drink whatever I want as much as I want. That’s the hardest part. Just not being able to quench a thirst, it’s terrible.”
But despite the challenges he faces, Guida still makes a point to stay fit.
“I go to the gym, I work out every day. There’s no real physical limitations, it’s just as well as I’m feeling. If I feel good, then I can do more. If I feel not good, I don’t do as much. I do [have good days and bad days],” he said.
For those who are afraid to donate, Jennifer Flood said there should be no fear over living with one kidney.
“People don’t know they can do very well living with one kidney. Having one is perfectly fine if you take care of your health,” she said.
Guida said there isn’t as much recovery time, as large an incision or as dangerous of an operation as many people perceive there to be.
“I honestly think that everyone should be an organ donor because we would save a lot more lives that way,” he said. “Whether they’re alive or dead, everyone should be an organ donor.”
To learn more about the Flood Sisters Foundation, visit www.floodsisterskidneyfnd.org.
To reach out to Jack, call 516-528-9138 or contact his transplant coordinator, Helen Rominicki, at 718-920-6729 or hrominie@montefiore.org.
