Immeasurable gift: A 2nd chance at life
Source: Wisconsin State Journal
On a recent sunny summer afternoon, the kind perfect for lingering at an outdoor lunch table, Dick Mueser sat at the Culver’s in McFarland and told his life — and near-death — story.
Mueser, a robust-looking 69-year-old with spiky gray hair, had biked the 10 or so miles from his summer RV home in Stoughton’s Viking Village. His red LeMond racing bike sat propped against a hedge, and a United States Marine Corps biking shirt hugged his chest.
Inside that chest beats someone else’s heart.
“We were literally making plans for my funeral,” Mueser said. “This was the last roll of the dice.”
The 2004 heart transplant brought him back from death’s door.
Kellen Binger shrugged a lot when asked questions about his health history, his family and his favorite sports. Not the indifference of a teenager — not yet, anyway; he’s 12 — but the sort of no-big-deal attitude of just a regular kid.
It was a busy morning at Kellen’s Fitchburg home. His aunt and three young cousins were visiting from out of town, two of his three siblings were in and out. His mom, Dinny, and dad, Tim, were cleaning up in the kitchen.
Amid the commotion, the Bingers had made time to talk about Kellen’s rare disease and the kidney transplant — Tim was the donor — that has helped him regain an energy and zest for life.
“In 2006, I had a transplant,” Kellen said in response to an opening question. “And then what, mom?”
Two transplant patients. Two athletes. Two of the hundreds of compelling stories that can be told by participants in the U.S. Transplant Games, the biennial event highlighting organ transplantation and donation that comes to Madison next weekend.
More than 7,500 people are expected to be in town for the games, including 1,500 transplant athletes from 46 teams who will participate in 13 sports, said Krista Flanagan, the Transplant Games event manager in Madison. First held in 1990, the games are organized by the National Kidney Foundation and include athletes from all over the country who have received an organ transplant. For many, the games aren’t as much about competition as camaraderie.
“It’s a celebration of their second chance at life,” said Cindy Huber, CEO of the National Kidney Foundation of Wisconsin. “It’s also a tribute to the donors who make it possible.”
Holding this year’s event in Madison will highlight the quality transplant care offered in Wisconsin, Huber said. The state has two organ procurement organizations, the Wisconsin Donor Network and the UW Organ Procurement Organization, and four transplant centers — Children’s Hospital of Wisconsin, Froedtert Hospital and Aurora St. Luke’s Medical Center, all in Milwaukee, and UW Hospital in Madison.
“All four are nationally known for their transplant excellence,” Huber said.
Games supporters also hope to draw attention to the new online Wisconsin Donor Registry,yesiwillwisconsin.com. The site, which went live in late March, goes beyond putting an orange sticker on a driver’s license and allows would-be donors to register with the state Department of Health Services. That way, in case of an accident, their wishes to be a donor are clearly known, Huber said.
“Right now, there are 1,500 people in Wisconsin alone waiting for some kind of organ,” she said, noting that the national wait list stands at about 108,000. “Nationwide, about 18 people die each day while waiting. The need (for donors) is great.
“It is our hope that by seeing and learning about the games, maybe friends or co-workers or people in (athletes’) communities will be made more aware of organ donation.”
‘A profound responsibility’
As a participating athlete, Mueser, who plans to swim and bike at the games, said the event is a chance to celebrate the gift of life and honor donors and their families.
“I’ve been given a profound responsibility to take care of this gift I’ve been given,” he said. “I want it to be natural for people to say, ‘Yeah, I’ve had a kidney transplant,’ or ‘I’ve had a lung transplant.’
“These games are an opportunity to help the community be aware of how wonderful the gift (of organ donation) can be.”
It’s also vital to remember the donors, said Mueser, who has met his donor’s family. “His name was Patrick,” Mueser said of the 54-year-old Michigan man who died in a motorcycle accident.
Mueser, who suffered his first heart attack at age 37 and desperately needed a transplant after years of declining heart health, vividly remembers the night of his transplant nearly six years ago. When he got the call that a donor organ might be available, he raced to the hospital and went through the whirlwind process, including a 7½-hour surgery.
But he paused during it all, he said, to remember one thing: “That somebody somewhere had just lost their life and their family had just been notified.”
Transplant at age 8
The Bingers’ story is a little different, because it involves a living transplant donor. Such donors also will be honored during the games.
Kellen, who is signed up to swim in the Transplant Games, was diagnosed with a metabolic disease called cystinosis at about his 1st birthday, his mother said. Because of the toll this damaging buildup of the amino acid cystine was taking on his young body, the family knew a kidney transplant would at some point be necessary.
In April 2006, when Kellen was 8 and much sooner than the family had anticipated, the time came.
“He wasn’t well,” Dinny Binger said of her son. “He had slowly gone from playing a lot of sports to just kind of hanging.”
Earlier that year, it had been determined that Tim Binger, a Madison firefighter, was the best match as a donor for Kellen. And so, Kellen got one of his father’s kidneys — a “plump and juicy” one, the family joked. While the transplant hasn’t cured Kellen’s cystinosis, it has given him new life in his fight against it.
Tim sometimes is asked by UW Hospital to speak to people who are considering organ donation.
“There’s lots of people that have a pretty big phobia about giving up body parts,” he said.
But Dinny Binger said now that the family has been involved in the transplant community, they all see what a difference donation can make.
“Once you meet these people who get these organs, how could you not be an organ donor?” she said. “Every story is just as amazing as the one you just heard.”
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IF YOU GO
What: U.S. Transplant Games
When: Friday through Wednesday, Aug. 4
Where: Various venues in Madison
Sports: Athletes will participate in 13 sports, including swimming, golf, volleyball, bowling, tennis and track and field.
Get involved: The public can take part in the July 31 5K Race for Organ, Eye and Tissue Donation, which starts at 9 a.m. at the Capitol Square, at the corner of Pinckney Street and East Washington Avenue, $30. The games' opening ceremonies, 6:30 p.m. July 31, and closing ceremonies, 7 p.m. Aug. 3, also are open to the public and are free. Both are at the Coliseum.
Wisconsin Donor Registry: State residents -- even those who already have placed an orange donation sticker on their driver's license -- are encouraged to register as an organ donor at yesiwillwisconsin.com.
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