22 LIers in competition help showcase organ donation

Dec. 20, 2007. Feb. 6, 2008. April 1, 2007. March 18, 1975, and Sept. 8, 2005.

For some, the days are quietly observed. For others, there are big parties. But always, these dates are acknowledged.

For Gretchen Hagerty, Dylan Page, John Acquaro and Kathleen Gerlach, these are what they call their "second birthdays" - the dates on which they received an organ and a new lease on life.

"Some people call it an anniversary but I call it my birthday because it's a rebirth of me being alive," said Gerlach, 55, of Greenlawn, who had two transplants.

The four people will celebrate the second birthdays by competing at the 2010 National Kidney Foundation U.S. Transplant Games, which began Friday and continue through Wednesday in Madison, Wis. They are competing in events such as swimming, cycling, and track and field at the biennial Olympic-style games.

There are 22 Long Islanders competing on the 112-member Team Liberty, which includes New York City, Westchester, northern New Jersey and parts of Connecticut. There will be 1,240 transplant recipients from all over the country, as well as 97 living donors, who are allowed to take part for the first time this year, said foundation spokeswoman Ellie Schlam. There are 12 sports, and ages range from 2 to 85 - the young ones compete in a "diaper dash," she said.

The games are used to showcase the success of transplants of donated organs and tissue. This is exactly why Hagerty, 60, of Baldwin, is running in the 5K race. Hagerty was diagnosed with kidney disease and in 2007 her sister Karen Beeken offered her a kidney.

"I got this transplant so that I could do more, and I think it's important for people to see that," Hagerty said. "I run because I can."

According to the nonprofit Donate Life America, 86.3 million people were enrolled in state donor registries at the end of 2009. In 2009, only 13 percent of those 18 and older in New York were registered. This is the fourth lowest rate in the country, according to the data.

Julia Rivera, spokeswoman for the New York Organ Donor Network, the largest organ procurement organization in the state, said the enrollment system is cumbersome - people either sign up when their license is renewed, or print and mail the form from a website. She hopes the problem will be solved through state legislation passed in June to allow sign-ups online with an electronic signature.

Dylan Page, 24, of East Patchogue, hopes his participation in the games will help erase misconceptions about donation.

"We really need to bring awareness to this and show that organ donation can help people such as myself, who was pretty much at death's door," he said. "Now I'm back playing basketball and swimming and doing things I was doing before I was sick, things I never thought I'd do again."

For Page, organ donation started with a lingering cough. A virus had left his heart functioning at just 7 percent, he said. When a matching heart was found - a 17-year-old male's - his family was elated, but Page's mother, Marie, said she began thinking of the donor's family. "I was surprised at just how terribly sad I felt," she said. "They must have thought they lost everything, and to be thinking of other people at that time is an amazing thing."

The games have become a "sorority" of sorts for donation families, Schlam said; a safe place to discuss lost loved ones.

The games also bring together recipients, though they often stay in touch by e-mail, Gerlach said. "You get each other, you understand," she said. "There is an unspoken bond."

Ronkonkoma's John Acquaro, 57, said along with promoting organ donation, his mission in life is to honor his donor family by taking care of his heart.

At age 31, he was diagnosed with heart disease. Over the next 25 years, he underwent more operations than he can count and couldn't walk more than 20 feet without tiring.

But since his transplant in 2007, he has started doing triathlons. He placed a picture of his donor, a 23-year-old woman named Shakonna, on his bike. "Whenever I get up to a tough hill and have a long, hard four-mile climb, I look down at her and I say, 'The two of us can do this,' and it really pulls me through," he said.

ORGAN TRANSPLANTS IN U.S.

104,748 patients are waiting for an organ transplant

4,000-plus new patients added to the list each month

18 people die each day waiting for a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow

Because of the lack of donors, 4,573 kidney patients, 1,506 liver patients, 371 heart patients and 234 lung patients died in 2008 waiting for transplants.

Nearly 10 percent of those waiting for heart transplants are under 18

SOURCE: NATIONAL KIDNEY FOUNDATION, ORGAN PROCUREMENT AND TRANSPLANTATION NETWORK

*****

John Acquaro
Ronkonkoma, 57, heart recipient
Retired carpenter
“One of the toughest things for me is to realize that somebody had to die for me to receive the gift that I got. It’s something I struggle with every day. But all I can do is take the best care of it that I can, that’s all I got left.”

Kathleen Gerlach
Greenlawn, 55, kidney recipient
High school art teacher
“They gave up something to give somebody else a new life, so they really are the heroes.”

Gretchen Hagerty
Baldwin, 60, kidney recipient
Speech pathologist at a special education preschool
“It was just a miraculous event in my life. The fact that can bring attention to organ donation, I find just to be a really positive thing.”

Dylan Page
East Patchogue, 24, heart recipient
Studying to be a teacher
“When they took that last IV out, it was the best feeling in the world, to finally be free. I feel lucky that someone would give the gift of life.”