Teen with kidney disease is hoping for a living donor

[okarol]

Teen with kidney disease is hoping for a living donor

Getting kidney from a cadaver would lower survival chances

Posted by the Asbury Park Press on 04/22/07

BY NICK PETRUNCIO
FREEHOLD BUREAU

COLTS NECK — Nicholas Marone Jr. had no indication the kidneys inside his body were not functioning until he started to feel "annoying" cramps in his hands.

"I thought it was just cramps from going to the gym and stuff like that," said Marone, a 19-year-old who loves to play hockey and went to the gym three to four times a week.

But it was not only the cramps in his hands. He also felt cramps all over, was chronically tired and had no appetite.

Medical tests confirmed that these annoying symptoms were much more serious than a consequence of an active lifestyle. They were the result of toxins building up in Marone's bloodstream, toxins that his kidneys were supposed to be filtering out.

Tests revealed that Marone's kidneys are one-third the size they should be. He was diagnosed with nephronophthisis, a hereditary kidney disease, usually found in children, that destroys the organs.

Marone needs a kidney transplant. His father, also Nicholas, 59; mother, Phyllis, 56; sister, Lauren, 17; and others who love and care about him are hoping a donor comes forward. No one in Marone's immediate family is eligible to give him one of theirs.

Although Marone is on several transplant waiting lists to get a kidney from a cadaver, he'll have a better chance for survival if he gets one from a living donor, according to medical experts.

"A live donor is always better," said Dr. Sushil Mehandru, chief of nephrology at Jersey Shore University Medical Center in Neptune and clinical professor of medicine at the University of Medicine and Dentistry of New Jersey.

Mehandru, who is Marone's doctor, said the five-year survival rate for recipients of cadaver kidneys has improved from 45 to 50 percent to 85 to 90 percent because of new medications. However, the five-year survival rate of recipients of live donor kidneys from relatives is 95 percent and 92 to 93 percent for live donors who are not related to the recipient, he said.

The National Kidney Foundation reported on its Web site that the one-year survival rate for recipients of cadaver kidneys is 94.5 percent and 97.9 percent for kidneys from live donors. The foundation did not differentiate between relatives and non-relatives.

Mehandru noted that delays in transporting a cadaver kidney to a potential recipient could make the organ no longer viable.

There are approximately 70,000 people on the national waiting list for a kidney, and the average wait time is three to four years, said the elder Nicholas Marone, who added that his family has received quite an education from his son's situation.

Marone's father said putting someone on dialysis for a long period of time puts a strain on the person's body and shortens his or her lifespan.

Mehandru said: "The ultimate treatment of end-state kidney disease is not dialysis; it is transplantation, and he's end state."

Marone, who began dialysis in early December, goes for the four-hour treatment procedure at Jersey Shore three times a week.

"It's rough. It's painful. The overall word to describe it is annoying. That's the best word to describe it," he said, adding that the treatments can leave him feeling lethargic.

Marone, who studies business at Brookdale Community College in Middletown's Lincroft section, missed out on spring break with his friends this year because he has to go for dialysis treatments. He also has not been medically cleared to play sports, such as hockey, because he had open-heart surgery in March to remove a blood clot, which formed as a result of complications from initial dialysis treatments, according to his father.

Phyllis Marone said her son — about whom many would say is in the prime of his life — is a good kid and well-liked by his peers, has never been in trouble and has never asked "Why me?" about his disease.

"As a parent, you want to make everything right, and you want to take away all the pain," she said.

His father said his son has accepted his disease.

"He knows he's going to get a kidney some day," he said.

Mehandru called Marone "a perfect gentleman" and said the support his family has offered is unprecedented.

The family wants to thank relatives, friends, Mehandru and the dialysis center staff — including Rosanne Gerand-Cerchia, who runs the center — for their support.

Marone, who proudly wore a New York Rangers T-shirt during an interview Thursday, has Type O-Positive blood. If anyone matches that blood type and is willing to donate a kidney, he or she is asked to call a special line Marone's father has set up. The number is (732) 303-9698.

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