BERLIN CENTER New liver, new lease on life

By MARALINE KUBIK
VINDICATOR STAFF WRITER
BERLIN CENTER -- Matthew Kuebler wore No. 13 on his baseball jersey from the time he was a 6-year-old peewee player. He thought it was good luck.
In March 1997, his 13th birthday fell on Friday the 13th.
By then, Matthew's good luck had changed to some of the worst kind of luck any kid could have. He had been diagnosed with primary sclerosing cholangitis, a rare, life-threatening liver disease.
He was too sick to play ball. His only hope of ever playing again, or growing up, depended on a liver transplant.
After three years on a waiting list, Matt got a new lease on life with a new liver July 2, 1999.
He's finally well enough to play baseball again, but he's wearing a different number on his Western Reserve High School junior varsity uniform -- No. 2.
He got a second chance July 2 and he's playing second base.
Eventually, Matthew may need a second transplant, his mother, Linda Kuebler, said, adding that No. 2 is definitely his number.
She knows how lucky her son is.
His story: His time had almost run out. In December 1998, doctors predicted he would live only an additional three to six months. From that point, it was six months before a suitable liver became available.
Had Matthew's name been put on the list any later, he would likely be dead.
Kuebler, a nurse, knows her son was incredibly lucky -- his name was placed on the donor list a full six months before his symptoms became apparent.
The family discovered Matthew had liver disease almost by accident. He'd broken a finger, which made it difficult for him to bathe and dress himself. His mother helped him.
He'd been complaining about his pants fitting too snugly and she thought his abdomen looked swollen. Even though Matthew felt fine, his mom made an appointment for him with the doctor.
The diagnosis was far worse than they'd expected. Matthew's liver and spleen were enlarged; blood tests confirmed that all of his cell counts were low. He was admitted to Tod Children's Hospital immediately.
Put on list: A biopsy revealed the severity of his illness and in December 1996 his name was added to a national list of patients in need of an organ transplant.
He chose Children's Hospital of Pittsburgh for further treatment, the home of his favorite professional baseball team, the Pittsburgh Pirates.
Although illness put his game on hold, Matthew still enjoyed watching the pros play. When he felt up to it, he also helped his youngest brother's peewee team, pitching balls in practice.
During one of his hospitalizations, Kuebler noted, Matthew was released a day early just so he could go to a game.
Although he never lost hope that one day he would play ball again, Matthew's illness took its toll. "He was scrawny, jaundiced and getting sicker by the day," his mother said.
Because Matthew's blood type is the most common -- O positive -- the list of patients waiting for a liver from an O positive donor was 10 times longer than it was for patients with rarer blood types.
"Over the past few years, the number of people who need transplants has more than tripled, while the number of donors has remained relatively the same," said Debbie May-Johnson, executive director of LifeBanc, a nonprofit organization that coordinates the recovery and transplant of donor organs in northeast Ohio.
Statistics: Right now, more than 75,000 people are on the national organ transplant waiting list. Of that number, more than 1,200 are registered in northeast Ohio hospitals, she said.
Last year, LifeBanc found 83 donors in northeast Ohio, a 21-percent increase over the year before. In March, it set a monthly record of 15 donors; the previous was 12, set in May 2000.
Even so, the shortage of donor organs is critical. "Nationally, 15 people on the waiting list die each day because a compatible organ is not available," May-Johnson said.
Because Matthew still has the disease that caused his liver to swell to nearly three times its normal size, there is a chance that his new liver could eventually become diseased, his mother said.
Public awareness is important.
Promoting donation: Matthew has been promoting organ donation since he became ill. Even before he had his transplant, he entered a project on teen awareness at a science fair at Youngstown State University. He recently participated in Run for Your Life 2001 to promote organ and tissue donation.
"It's great to be back to being a normal, healthy kid," Matthew said. "But I'll always be different. I carry a gift of life that I must treasure not only for my own life, but in honor of my donator's memory and his family."
To honor his donor and his own second chance at life, Matthew urges others to sign organ donation cards.
Matthew is planning to get his driver's license this month.
Despite the 40-plus pills he takes like clockwork every day and the chance that he may someday need another liver, he's not intimidated.
Before his surgery, "I wasn't scared; I knew I was coming back," he said matter-of-factly. Afterward, he pushed himself to live life to the fullest, attending school with staples in his stomach and an intravenous line in his arm, all so he could be with friends and not get too far behind in his studies.
After five years, he's back on the baseball field, although with aches and pains, since he also suffers from arthritis and crohn's disease.
But he plays on, he said, because "everyday I'm so grateful for the caring support, hope and prayers that I received and especially for being given this second chance for life."