Tag Archives: polycystic kidney disease

Two Glendale residents searching for kidney transplants

| slicata@queenscourier.com

THE COURIER/Photo by Salvatore Licata

When the workday ends for Debbie Zeni, she returns to her Glendale home to her husband and two children, Ava, 8, and Dario, 9.

But before she can spend time with them, she has to meet with another member of the household: Nancy #3.

Nancy #3 is Zeni’s dialysis machine and its name was coined by her two children as it is now the third one to have taken residence in their home.

Zeni needs to use it each day for over two hours because she has a condition called polycystic kidney disease, a hereditary condition where cysts form on the kidney.

Both of her kidneys have been completely non-functional for almost two years, so she needs Nancy #3 to survive.

“It is a real hardship each day,” Zeni said. “But you just have to keep fighting and not give up hope.”

Zeni’s appearance would not cause anyone to think that she is fighting for her life each day, and many times when she breaks the news to people, they respond with a look of disbelief.

This also applies to James Deifel, one of Zeni’s friends who also is suffering from kidney complications. Deifel, a Glendale resident and father of two, has a condition called focal segmental glomerulosclerosis (FSGS), which has currently depleted his kidney function to about 16 percent.

Still, each day, he gets up and goes to work for Verizon in order to support his wife, Claudia, and two children, Julia, 9, and Michael, 13.

There is no cure for either Zeni or Deifel’s diseases. The only option for either is a kidney transplant.

Each has gone to family members and are on a transplant list, but neither has found a match.

But they are not giving up hope and neither is Deifel’s wife, who is now trying to up the chances to find a donor by using social media.

Last week, Claudia Deifel started a Facebook page called “Glendale Kidney,” where she has listed both her husband’s and Zeni’s conditions along with their case managers’ information. The page has already received more than 1,500 shares, and she is hoping that getting the word out to the community and beyond will better the chances of finding donors.

“I thought to myself, let me start with the community and get the word out to people,” Claudia Deifel said. “All I could do is keep putting the word out there and hope the right person sees it.”

Contrary to popular thought, with today’s technology, a kidney transplant requires only minimally invasive surgery. The donor would first have to take a blood test to see whether a match existed.

But both Zeni and Deifel understand the difficulty involved in kidney donation.

“We are aware it would really take a special type of person for a stranger to donate an organ to another stranger,” Zeni said, while holding Ava on her lap. “But if I get a kidney, I know I would live to a ripe old age.”

As they continue to fight, both are humbled with the overwhelming response they have gotten from the community via Facebook. They hope that as their story spreads, their chances of finding a match will grow.

“It’s great to see that friends of friends in the community have been spreading the word around,” Deifel said. “Remember, it only takes one.”

To find out more information, visit “Glendale Kidney” on Facebook.


Howard Beach mom on a mission to find a cure

| tcullen@queenscourier.com

THE COURIER/Photo by Terence M. Cullen

Nicholas Caligiuri for the most part is your average sixth grader.

He likes playing football, watching TV and banters with his mom, Erin Phillips, as he sits at the kitchen table of their Howard Beach home munching on Goldfish crackers.

When Nicholas, now 11, was five years old, he was diagnosed with polycystic kidney disease (PKD), a genetic kidney ailment that causes cysts to grow on the organ.

The disease, doctors say, is hereditary, and Nicholas’ father is also afflicted. “We kind of knew it was going to happen,” said Phillips.

It is something he’ll have to monitor for the rest of his life, especially as he gets older, said his mom. The cysts can prevent the kidney from doing its job properly, and can cause high blood pressure and kidney stones, among other things. As the number of cysts grows, Nicholas could potentially need dialysis or a kidney transplant by the time he’s 50.
PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia combined, according to the PKD Foundation.

At first it was one cyst on his left kidney and two on his right, but now, almost seven years later, there’s a few more.

“We just have to basically monitor it right now,” Phillips said. “Right now they have been growing, they have been multiplying.”

Phillips said her son can go about his normal day like any other kid, so long as he maintains a healthy diet that includes a lot of water. She is cautious, however, and said she’s taught him what warning signs to look for.

Nicholas, she said, knows to alert her immediately if there is blood in his urine or has a stomach ache, which might signal that one of the cysts has burst.

Because Nicholas has a cystic disease, Phillips said the rest of his body has to be monitored, including getting a brain scan every three or four years to ensure none are growing in his head. If he ever gets a headache, he has to alert his mom — just in case.

It has been Phillips’ personal mission to inform people of the disease and advise people with a family history of PKD to get tested. To raise awareness, she has organized a yard sale and a walk since 2006, when her son was first diagnosed. Between 2006 and 2012 she’s raised about $9,000 and taught more people about the disease.

“There’s lots of people with it that probably don’t know they have it,” she said.

The collected money has been donated to the PKD Foundation, which is the closest it has ever been to finding a cure or treatment for the ailment in its 30 years of research. The PKD Foundation is currently testing a new drug, she said, which could potentially stop cyst formations on the kidney.

While Nicholas is conscious of his problem down the road, he’s more focused on being a kid and one day playing football for either the New England Patriots or the San Francisco 49ers.