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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on September 15, 2010, 11:03:28 PM
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MONTANAN FALL 2010
Alumni profile: A Father's Fight
Threat to daughter leads UM alum to create life-saving organization
By Nate Schweber
photos by David Savinski
Intense focus: UM alum Garet Hil started an organization that helps families find transplant donors for their loved ones.
Garet Hil remembers the moment he lost control. It was the day doctors said they couldn't cut him open and give a piece of his insides to his daughter to save her life.
Until that point Hil's life was distinguished by mastering his every challenge. As a teen he drew a bead on moving to Montana. He set his sights on being a Marine and graduating from The University of Montana. He honed in on a business career and became very successful.
But when his young daughter's kidneys failed, and he learned hours before surgery that she could not take one of his own, suddenly his most trusted assets, his focus, his work, even his body, couldn't save the day.
"You don't expect it; you don't see it coming," Hil says. "And then you wake up one day and your kid has kidney failure."
Hil, who graduated from UM in 1984, shakes his head and his brown eyes turn slate gray when he talks about what he calls that "devastating" time three years ago.
The experience inspired him to start a nationwide network matching kidney donors with patients. The National Kidney Registry, which uses the most efficient method yet devised to link donors with recipients, has saved scores of families the kind of pain that Hil's family endured.
It also has saved lives.
"Nobody was tackling the problem effectively, so my wife and I said, 'We've got to tackle this problem,'" Hil says. "I know what that's like-my daughter was on the other side of the equation."
Hil runs the National Kidney Registry from this West Islip, N.Y., office.
Hil, at age forty-seven, is fit and friendly, with a chiseled mug that an old college friend described as "like Errol Flynn's handsome older brother." He speaks in a matter-of-fact style. Even his name eschews redundant letters. He keeps his home and business headquarters in West Islip, N.Y. Gatsby country.
The first thing he remembers wanting more than anything was to live in Montana. Born in Severna Park, Md., Hil went on a family vacation to Montana when he was on the cusp of his teenage years.
He was spellbound. He remembers spending a week hiking the mountains around Missoula.
"It was just so beautiful," he says. "It was amazing."
The Treasure State left such an impression on young Hil that he decided he wanted to go west and work on a farm. Barely sixteen, he moved to Missoula and into a South Hills apartment with his cousin. He enrolled at Sentinel High School.
The farm fantasy didn't quite work out. Instead he sold fancy women's footwear at the old Thom McAn shoe store in Missoula's Southgate Mall.
After high school Hil joined the Marines and studied field radio operation at Parris Island, S.C. Months later he switched to the Reserves, bought a motorcycle, and took a coast-to-coast road trip that ended, once again, in Montana. He worked a landscaping job beneath his beloved Big Sky for a summer.
In the early 1980s, Hil transferred to UM from a community college in Maryland. He decided to kindle his entrepreneurial spirit and study business.
His close friend Richard Venola, who lives in Peoria, Ill., and works as a field editor at Guns & Ammo magazine, remembers how Hil was so dedicated to his major that he wore business attire to class every day.
"Every night he would press his clothes and step out in a suit and tie and sit in the front row in business class," Venola says. "Garet is intensely focused. When he told me he was going to start the National Kidney Registry, I knew it was a success already."
Michael Heitmann, a retired Marine and now an auctioneer in Colorado, remembers Hil's gung-ho attitude outside of class. On weekends when Hil wasn't running reconnaissance drills with the Marines near Billings, he, Venola, and Heitmann dove headfirst off the Deer Creek Bridge into the Clark Fork River and bounded around improvised obstacle courses in the valleys, firing rifles at pizza boxes. Another time, Hil entered an amateur boxing contest at the old Carousel Lounge and whupped every challenger, emerging with only a black eye.
"We read Hemingway and Steinbeck; we were tough guys," Heitmann says.
Hil keeps good memories of what he calls his "motorcycle days."
"I loved Missoula," he says.
When he received his bachelor's degree, though, Hil left Montana for good. He had business elsewhere.
Hil opted out of the Marines and charted a career in business. He went to the Wharton School, the University of Pennsylvania's business program in Philadelphia. A succession of jobs landed him in Omaha, Los Angeles, Seattle, and Virginia.
Around 1990 he moved to Boston, where he started a division of a mail processing company. There he fell in love with a New York woman who worked for Dreyfus Mutual Funds and was one of his company's best clients. Soon he married Jan Vilim.
"I made that sale," he says.
Hil moved to New York City in 1993, and three years later his first daughter was born, rounding out a family that also includes a stepdaughter.
In the late 1990s, Hil settled in Long Island, and in 2003 the company he helped build sold for more than a billion dollars.
All seemed on the usual up and up for Hil until that cold February day in 2007, when his ten-year-old daughter got sick and didn't get better.
"It just blindsided me," he says.
The problem with kidney transplants is that if a person in need tries to get a kidney from a friend or relative willing to donate, the odds of them being compatible is around one in ten. If that doesn't work, the pair try to find one other pair with whom both donors and both recipients are compatible. This is called a "paired exchange." The odds of it working out are around one in a hundred.
Hil learned fast that this is how most transplant programs work.
His daughter, whose name he asked not be printed for the sake of her privacy, had a rare genetic condition that made her kidneys shut down. Hil hoped he could give her one of his, knowing that kidney transplants from live donors last twice as long. But doctors called off the swap thirty-six hours before the operation because they discovered an incompatible antigen in Hil's blood.
"You're the dad; you know you can control things," Hil said. "Once I was out, we'd lost control."
Hil launched an urgent search for a donor. He contacted every plausible hospital in the nation. None helped.
"I couldn't understand why I couldn't get a match for my daughter," he says.
Hil and his wife lived by their daughter's hospital bed for a month, working to cheer her with arts and crafts projects. When she came home, they brought her to dialysis three times a week, their hearts heavy with the knowledge that the longer she spent on the machine, the shorter her life expectancy.
At that point Hil's existence was distilled down to finding a transplant for his little girl. His daughter's kidney became his business. His Marines. His Montana.
Friend Venola says he lost track of Hil during this period.
"He was completely closed down; he went into combat mode," Venola says. "All he did was rescue his daughter. When I finally got an e-mail from him, I was like, holy cow, he's been through a journey."
In July 2007, five months after the ordeal began, one of Hil's nephews stepped up. The twenty-three-year-old donated his kidney. The transformation in Hil's daughter was extraordinary. She unplugged from dialysis and resumed her normal life. Her embattled body grew again.
"It was miraculous," Hil says.
The transplant was both a milestone and a crossroads. Hil achieved his goal and could have gone back to his business career. But he still reeled from the experience of hunting for a kidney.
"There had to be a better way," he says.
Hil had a vision to start a nationwide database of kidney donors. That way, instead of just paired exchanges, kidney swaps could include numerous people, boosting the odds of finding a match.
From that germ of an idea, he took what he called "the big leap" and founded the National Kidney Registry. His wife says it made perfect sense.
"Garet and I always felt that it was important to make a positive difference in the world," says Jan Vilim. "The National Kidney Registry was a natural choice for us to accomplish this because it touched us so personally."
A report on transplant "chains" that can include numerous patients
In 2009 the registry facilitated sixty-two transplants. By mid-2010 that number more than doubled and included several donor chains comprising more than ten people.
"We are facilitating five times the number of transplants as the industry standard," Hil says, adding that the registry has shrunk the average wait time for a kidney from more than six years to less than one year.
Dr. John Milner, director of living donation at Loyola University in Chicago, says Hil is revolutionizing kidney transplantation.
"He's matching some of the most difficult to match transplants in the country that before were almost impossible," Milner says. "You combine a loved one who needs a transplant and a brilliant man and things start to happen."
Impressive as the statistics are, they pale compared to testimonials from people around the nation such as Kimberly Wagner, forty-three, a teacher in Glenshaw, Pa., whose life was turned around by her kidney transplant in February.
"I thought it was never going to happen," she says. "I'm just so thankful."
Melissa Clynes, nineteen, a student in St. Louis who received a new kidney in March, calls the registry "a blessing."
Though the registry's reach is nationwide, its roots are at UM. Hil learned the basics of the complicated computer programs used to match donors with patients from statistics Professor Patrick Shannon, who taught at UM during the 1980s.
Shannon, now dean of the College of Business and Economics at Boise State University, marvels at Hil's accomplishments.
"The fact that he's making an impact on people and the fact that he remembers that course and what he got out of it, that's what it's all about in our profession," Shannon says.
The most important fact is that Hil's daughter, now fourteen, is healthy and active. She jogs with her dad on the beach in the mornings, and Hil takes great pleasure regaling her with tales from his motorcycle days.
"She knows more about my time in Montana than any other," Hil says.
One day she might even run the National Kidney Registry. She's expressed interest, Hil says, and he is adamant that the registry be shepherded by "someone who has been there."
That's a long way off, though. She still needs to grow up. Also, since Hil wrested back some of the control he lost during those dark days, he doesn't plan to let go of the National Kidney Registry anytime soon.
"I plan to run it for a long time," he says. "It's my passion."
About the Author
Nate Schweber is a freelance journalist who graduated from UM's School of Journalism in 2001. His work has appeared in The New York Times, Rolling Stone, Budget Travel, and The Village Voice. He lives in New York City and sings in a band called the New Heathens.
http://www.umt.edu/montanan/f10/A%20Fathers%20Fight.asp