Breath of Life Elusive for Queens Woman — and Many New Yorkers

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Prasha Tuladhar and her husband Dipak Maharjan try to make life as normal as possible for their daughter Jolene.

When Prasha Tuladhar was a child in Nepal, her grandfather taught her a parable about a Buddhist monk who offered his arm to a starving tiger, so the tiger could live.

“Give what you can,” the story taught Tuladhar. “Even if it’s flesh, you can give.”

Tuladhar doesn’t need a sacrifice from someone who’s alive, but she is hoping that as someone is dying his or her lungs could save a life, maybe even hers. The 27-year-old Queens woman has been on an organ donor wait list since last December.

Her immune system is attacking her body, and scar tissue is filling her lungs, depriving her of oxygen. She has a progressive disease called scleroderma, and it’s getting worse.

“Many patients don’t want to think about the donor, but that’s the only option for me,” Tuladhar said. “I’m not trying to be greedy or anything. Many people are born every day, and many people die every day — so recycling yourself is a good deed anyone can do, and I’d do it, too.”

Tuladhar is one of roughly 10,000 New Yorkers on waiting lists for organs. In addition to their medical problems, they're challenged also by their geography: New York has the lowest enrollment rate for organ donors in the country. 

Nationally, about half of all adults are registered to donate their organs at death. New York is about half that — around 25 percent of New York adults have registered to share their livers, kidneys, hearts, lungs and more upon death. In Alaska, the state with the highest enrollment, the rate is 83 percent.

When Tuladhar went on the list, she was told the average wait time for lungs was five months; she's now approaching a year, and her health is deteriorating. Her breathing has grown more labored, and a gangrenous toe needs to be amputated.

"If Prasha doesn't get new lungs soon, we estimate she has less than six-to-12 months to live," said Dr. Selim Arcasoy, her pulmonologist and medical director of New York Presbyterian's lung transplant program.

Patients on the organ wait lists are scored based on their medical condition. The more their health declines, the more they move up the wait list. Arcasoy said between 10 and 20 percent of his patients died before lungs became available.

Exacerbating New York’s low enrollment rate and high population is the way the United Network for Organ Sharing allocates organs and manages the wait list. The congressionally chartered agency has divided the country into regions, and New York is large enough that it’s almost its own region. In theory, people on the wait list can get organs from outside their region, but because people in a region get first dibs, you can have someone in New Jersey getting lungs even though they’re not as sick as some New Yorkers.

“If the lungs were allocated not locally but in a more national or [larger] regional fashion, the death rate on the waiting list would be a lot lower,” Arcasoy said.

And even when people get new lungs, they can’t completely breath easy. New York Presbyterian has a better track record than many hospitals, but they still lose 50 percent of lung patients within five years of transplant. 

Better drugs, technology and surgical techniques have improved how long transplant patients survive, at least in the short run.

“Some of my patients go back to cycling or running or hiking or things they haven’t done in years,” Arcasoy said.

Tuladhar would just settle for climbing the steps to her apartment without gasping — and for having the joy of chasing around her two-year-old daughter, Jolene, who’s never seen her mom without oxygen tanks.

“I want to take my daughter to the park by myself, take her shopping by myself, hold her hand, walk around,” she said. “I just want to be normal.”

Tuladhar’s illness forced her to put her education at the Polytechnic Institute of NYU on hold, but it’s also given her a mission: she volunteers for LiveOn NY, the state’s organ donor, trying to enroll New Yorkers to be organ donors. Once a week or so, she sets up a table, hands out information and makes her pitch.

“You have to be your own advocate,” she said.