One family, five transplants
Costagliolas talk about organ donations during National Kidney Month
BY JENNIFER KOHLHEPP Staff Writer
Every day, about 18 people awaiting an organ transplant in the United States die because no organ is available.

ERIC SUCAR staff Mary Costagliola speaks of her children's battle with kidney disease at her Millstone home on March 18. Siblings Louie, 33, Theresa, 22, and AnnaMarie, 32, have all undergone transplants and numerous other treatments for medullary cystic kidney disease.

Consider the emotional and physical toll of those waiting, such as AnnaMarie Costagliola, 32, who has been struggling to survive without kidneys since she lost a transplanted kidney to a virus in 2001.

Having dialysis for four hours, three times a week has taken a toll on her body. Scars cover her arms where tubes have been inserted time and again and where she has had to have multiple surgeries to graft fissures. To replicate what kidney function does, she has to live on a restricted diet and had to succumb to a pero-thyroidectomy to keep her calcium and phosphorous levels low. In 2007, she was hospitalized under near-death circumstances when she started bleeding profusely due to calciphylaxis complications.

PHOTOS BY ERIC SUCAR staff Clockwise from top left: AnnaMarie Costagliola totes around a bag of various medications that have helped her sustain living without kidneys since 2001. She tops the organ-transplantrecipient list, but doctors have yet to find a matching kidney. Theresa Costagliola talks about her struggle with kidney disease at her family's Millstone home on March 18. Louie Costagliola, who has had three kidney transplants, discusses the importance of organ donation.

AnnaMarie has been at the top of the organ donation recipient list for six years. Six of her family members and numerous nonrelations have been tested, but finding a match for her is difficult due to the numerous antibodies she has developed from kidney failure, blood transfusions and medications

While the Costagliolas wait for the day when doctors find AnnaMarie a matching kidney, the family celebrates that others have stepped forward as organ donors to save the lives of Louie, 33, who has had three kidney transplants and Theresa, 22, who has had one.

Three of the four Costagliola children have medullary cystic kidney disease, a hereditary disorder in which cysts in the center of each kidney cause the kidneys to gradually lose their ability to work. Their mother, Mary, said Louie was 8 years old when he became very frail and developed sores all over his body.

"He looked dead and you could literally see his heart pounding in his chest," Mary said.

Doctors diagnosed Louie with the rare genetic kidney disease in 1983 and by 1984 he had received his first transplant. However, when a common virus caused complications that resulted in the loss of the donated kidney, Louie waited a year before he got a second transplant.

"Transplants don't last for more than nine to 10 years," Mary said. "When a person gets a kidney, the body treats it like a foreign body and they have to be on anti-rejection medication that is very strong and makes for a weakened immune system."

Five years after the second transplant, Louie got the chicken pox, which resulted in the loss of 50 percent of his kidney function. Although he lived like this for the next 13 years, he had to have another transplant in 2004.

"Louie was easy to match all three times," Mary said.

Finding a match for Theresa didn't come that hard for the family either. Diagnosed with the same disease her siblings had at the age of 14, she went on dialysis for five weeks in December 2002 before getting the call in January 2003 that doctors found a matching kidney.

Today, Louie and Theresa have to take certain safety precautions and get regular checkups, but otherwise live happy and healthy lives. Louie holds a third-degree black belt in Black Cat Kenpo karate. He has earned the title of sensei and leads classes at Art Beins' Karate Center in Howell. He also works at Vesuvio's Pizza, the family's business, with his father Nick. Theresa attends college where she studies psychology and social work. She interns in the Millstone Township School District and plans to have a career in human services.

While AnnaMarie awaits a match, she and her husband, Cliff Brunt, keep a positive outlook on life despite the dialysis, diet and medication hassles they have to cope with in the meantime.

"You can't change things," AnnaMarie said. "You have to live. You have to fight."

The family shares their story and promotes organ donation so AnnaMarie and others like her have a better chance at survival.

"There are ads for cancer, diabetes, and everything else, but do you ever see a TV commercial about people needing transplants," Louie said.

Mary said donors do not pay any costs to donate.

"If everyone just checked the organ donor box when they got a driver's license, people wouldn't be waiting for organs," Mary said. "Such a little thing could make a world of difference in someone's life."

Millstone resident Elaine Landy, who has retired from a nursing career specializing in nephrology, said the number of people who develop chronic kidney disease and end stage kidney disease continues to grow as does the need for dialysis services and organ transplants.

"In New Jersey, there are 113 dialysis centers and five transplant centers," she said.

Lundy said any healthy person could contribute a kidney, as the body only needs one to function.

According to the Kidney and Urology Foundation of America, diseases of the kidney and urinary tract affect over 70 million Americans each year.

There are currently over 3,000 people awaiting an organ transplant in New Jersey and 2,700 of those are awaiting a kidney transplant, according to the foundation.

"Don't take your organs to heaven because heaven needs them here," Mary said.

To help raise money and awareness of the importance of organ and tissue donation, the Kidney and Urology Foundation of America, which is committed to the treatment and cure of hypertension, prostate, kidney and urologic diseases and improving the health and wellbeing of those affected by these ailments, will host its 10th annual "Walk the Walk for Organ and Tissue Donation" at 9:30 a.m. on May 3 at Memorial Park in Point Pleasant Beach.

Shirley Baer, executive director of the foundation, said, "With the help of those participating our annual walk we will raise money to help those people in New Jersey who suffer from kidney disease and urological diseases through our patient and professional programs. Over the past years over $750,000 has been brought in."

For more information about the walk, call the Kidney and Urology Foundation of America at 1-800-63-DONATE or visit www.kidneyurology.org.

To find out more about being tested to potentially donate a kidney to AnnaMarie Costagliola or others in need, contact the Hahnemann University Hospital in Philadelphia at 215-762-7000.