The Clinton Herald, Clinton, Iowa

May 4, 2013

Living proof that life's a gift

CNHI News Service
The Clinton Herald

---- — LOCKPORT, N.Y. — As a college athlete, Lea Sobieraski knew about odds and winning percentages. Just part of the game.

But when the “game” suddenly changed to life expectancy, it became a much more serious matter than playing for the Geneseo State College women’s basketball team.

Initially, the symptoms weren’t severe. Sobieraski had lost her appetite. But she became concerned when the problem persisted and sought a medical opinion.

The news wasn’t good. After rounds of testing, she was told she’d need a liver transplant.

With the onset of a rare genetic disorder called Wilson’s disease, Lea’s liver was destroyed, seemingly in a matter of months. The disease makes the body unable to flush out copper; the metal accumulates in vital organs instead, eventually causing physical symptoms including fatigue, bloating, loss of appetite, easy bruising and achy feet.

Pre-Christmas testing at Eastern Niagara Hospital led Lea to the first in a series of shocking discoveries, as the fit, trim, three-sport scholastic athlete was told that her liver looked cirrhotic, that is, “like a 60-year-old alcoholic’s liver.”

Wilson’s disease and the poor condition of her liver were confirmed by biopsy.

She was placed on a liver transplant waiting list. Some are fortunate and become a good match for a donated organ; others aren’t. Given her perilous condition, time wasn’t on her side.

Fortunately, Lea got the call from her liver specialist on March 2 indicating a match had become available, and she needed to get to Strong Memorial Hospital, Rochester, N.Y., immediately to receive it.

The surgery was a success marred only by a couple of “minor” treatable complications, according to Lea.

Fifty days after the transplant, she said she was enjoyed feeling “normal” again, easing her way back into a workout routine and looking forward to getting back to Geneseo— and basketball — this fall.

Sobieraski knew she was lucky – and blessed.

But that’s only part of her story. She knows she owes her life to a stranger. Some fellow patients needing vital organ replacement won’t have occasion to say the same. The odds are high that at least one of them will die waiting.

That is likely to happen partly because there are too few registered organ donors in New York state.

The New York State Donate Life Registry is a means by which people give legal consent to donation of their organs in the event of their death. When decedents are not registered, physicians/surgeons have to get permission from a closest survivor such as a spouse or parent.

Lack of information – and understanding – has been a roadblock to helping people get a transport and a new lease on life,

Sobieraski thinks that if people associated organ donation with “life” rather than “death,” the question of whether to register as an organ donor wouldn’t be one to avoid. She’s presenting herself as living proof that organ donation truly is “the gift of life.”

“If people talk about it before they’re in a crisis situation, then hopefully they’re more comfortable and prepared” to give consent for themselves or a loved one, Lea said.

In an effort to better educate young people, Lea’s mother, Wendy Lanfear, told seniors at Lockport High School recently about the registry and the benefit of joining it.

The Sobieraski clan is planning a benefit in May to educate people about organ transplants and the value in making a decision when there’s time to help others.

Odds are that with an advocate like Sobieraski leading the way more lives will be saved.

Details for this story were provided by Joyce M. Miles, a reporter for the Lockport, N.Y., Union-Sun & Journal.