By Jamie Talan, Newsday, Melville, N.Y.
Mar. 14–Christina Cowan was one of 2,809 patients across the country waiting for a pair of donor lungs on the nation’s growing transplant list. Last week, the 16-year-old Massapequa teenager died after a five-month wait.
Yesterday at her funeral, family and friends recalled a spunky, outgoing, stubborn, compassionate girl who lived life without much compromise to cystic fibrosis.
“Her life was inspiring for a lot of people,” said Jeffry Wells, her pastor at the Community United Methodist Church in Massapequa, where the service was held.
Her father, Richard, told a story of Christina at the age of 10, only weeks before she received her first set of donated lungs. She was dancing in a recital as he sat nervously in the front row, holding an oxygen tank that was taller than the petite dancer. He would deliver oxygen if her lungs didn’t have enough. “Nothing could keep her from that performance,” he said.
That spunk captures the life of the teenager, who defied odds several times in the last several months during her stay at Children’s Hospital of Philadelphia. She withstood a ventilator when her lungs became too weak to support her body. She had a series of gastrointestinal infections she continued to fight.
Some transplant patients, like Cowan, opt to go out of state, where their chances may be higher for an organ match. Last week, her parents were about to transfer her back to a New York hospital, where, at 16, she could qualify for an adult transplant program. There is no pediatric lung transplant center in the New York area.
“She never gave up hope,” said her father. “Having cystic fibrosis never stopped her from achieving her goals.” But she was also realistic. Last year, in her backyard, she sat her parents down for a heart to heart. She told them that if she didn’t make it, she wanted to become an organ donor.
But her wish wasn’t realized. The damage to her organs made her unsuitable as a donor.
Nationwide, 95,000 patients are waiting for donor organs. Many, like Cowan, die while waiting. Last year, according to the United Network for Organ Sharing, more than 243 people across the country died waiting for a lung transplant. Ten of them were New Yorkers.
When she was 10, her family lived in North Carolina for nine months while they awaited a pair of lungs for Christina. During that stay, she found her passion for horses. When Cowan experienced her first fall from a horse, she got right back on and continued the lesson. Even a subsequent spine fracture didn’t stop her from riding, her father recalled.
And when life continued to throw her medical curves, she met the challenge with the same perserverance. “She always got back on the horse,” her father said.
Waiting is often a long game of chance. According to the United Network for Organ Sharing, the median waiting time for a lung in 2003 was almost two years. The number of lung transplants nationally has increased, from 931 in 1997 to 1,406 in 2005. A patient’s position on a transplant list depends on a number of factors, including the potential for long-term survival and the medical need.
“Deaths on the waiting lists have decreased,” said network spokesman Joel Newman, “but there remains a great need out there.”
The good news is that the message of the importance of organ donation seems to be getting through. Julia Rivera, director of communications for the New York Organ Donor Network, said there has been a 21 percent increase in the number of donor lungs between 2005 and 2006. The consent rate — dying people who choose to donate their organs — is now 56 percent, up from 48 percent in 2005. And of these potential donors, almost half fulfilled the medical criteria to donate their organs at death, a rate that also is increasing.
As he spoke at his daughter’s funeral, the importance of becoming an organ donor was Richard Cowan’s dominant theme.
For more information on organ donation: unos.org or locally at donatelifeny.org.
On the wait list
A breakdown of how long patients have been awaiting lung transplants nationwide.
Up to 1 year 27%
1-2 years 10%
2-3 years 15%
3-5 years 20%
5 or more years 28%
Total 2,809
SOURCE: UNITED NETWORK FOR ORGAN SHARING; NEW YORK ORGAN
DONOR NETWORK
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Copyright (c) 2007, Newsday, Melville, N.Y.
Distributed by McClatchy-Tribune Business News.
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