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Thursday, Oct. 14, 2010 05:54 am

Springfield man celebrates 25 years with transplanted heart

Childhood heart defect prompted state organ donation registry

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Ryan Louis survived an experimental heart transplant 25 years ago.
PHOTO BY PATRICK YEAGLE

For most people, taking second in a foot race would only be cause to try harder. For Ryan Louis of Springfield, it was a warning sign that would change his life.

“My mom asked me what happened, and I just said that I had gotten tired,” says the 32-year-old Louis, recalling a race that he ran near the end of kindergarten. “She had never heard me say that before; I was pretty hyperactive. But in her mother’s intuition, she said, ‘I think there’s something wrong with you.’ ”

She took him to several hospitals, where doctors discovered he had a heart defect that was expected to be fatal. His family set up a type of hospice environment in their home while trying to figure out what to do, until a neighbor suggested they visit Loyola University Medical Center in Chicago, which was experimenting with organ transplants in children at the time. Louis received a new heart at that hospital in 1985 at the age of seven. On Oct. 5, Louis celebrated his 25th year with a transplanted heart.

“I was the fifth-youngest in the world,” he says. “I can’t tell you how many of those survived, but it worked out pretty well for me.”

Louis says the knowledge gained by doctors from his transplant is used in organ transplants still today, but his influence reaches even further than that.

The neighbor who told Louis’s family about Loyola was none other than U.S. Rep. Tim Johnson of Champaign, who was a state representative at the time. Ryan Louis and his siblings were friends with Johnson’s own children, and Louis’s story prompted Johnson to push for changes in the state laws regarding organ donation.

“I saw Ryan as an example of why we needed to modernize and streamline our systems,” Johnson says. “His story individualized for me just how outdated our systems were.”

Because of that personal connection, Johnson helped pass bills to clarify eligibility for organ donation and outlaw the sale of body parts other than for research purposes. He also worked with then-Secretary of State George Ryan to create Illinois’ organ donor registry – the first state-run registry in the nation.

Louis remembers the disorganization and misunderstandings that existed before the registry.

“When I was in the hospital, there were kids dying left and right because there was nobody donating anything,” he says. “Nobody knew much about it or how to do it. People had the misconception that ‘If I’m on the table and they can use my organs, they’ll just let me die.’ It’s not like that at all, but back then there were a lot of horror stories about it.”

Johnson calls Louis’s story “heartwarming” because a family got to see their son “almost brought back to life.”

“Ryan’s family was and still is very dear to me,” he says. “His father (now deceased) was my best friend, and we (the families) still hang out whenever we can. My hope is that, through legislation and medical advances, we will allow heart transplants and other organ donations to continue to increase.”

Henry Haupt, spokesman for Secretary of State Jesse White’s office, which oversees the organ donor registry, says 5.4 million people have signed up as organ donors since Jan. 1, 2006, when regulations changed to allow Illinoisans to donate their tissues and organs without witnesses or their families’ consent, simply by indicating their wish to the Secretary of State’s office.

“I think it’s a wonderful testament to the generosity of Illinoisans,” Haupt says.

Ryan Louis says he lives life to the fullest because his late father inspired him to be strong and forego excuses. Louis does jujitsu, sings in two bands and is part-owner and manager of Hickory River Smokehouse in Springfield.

“One of the things that bugs me is people saying I’ve had a second chance,” he says. “Who hasn’t had two, three, even four chances at life? …Everybody has been given a second chance at some point. I’ve got a scar down my chest and medicine I take to remind me, but it happens to everybody, so when do you choose to live life?”

For more information on organ donation, visit lifegoeson.com.

Contact Patrick Yeagle at pyeagle@illinoistimes.com.

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