Logging on to life
December 31, 2007
Walter Bunn, 25, and a cystic fibrosis patient at the University of Utah, says his laptop keeps him sane.
A decade ago, doctors learned cystic fibrosis patients could infect each other on contact with a diverse militia of diseases. In addition to pancreas failure and debilitating lung congestion, those who inherit cystic fibrosis have weakened immune systems. Patients like Bunn therefore need to be sequestered for as long as they require hospital care for weeks, and sometimes months.
Being connected to the Internet makes a big difference. Bunn says online he can keep up with comics, watch YouTube and connect with friends on the virtual community, MySpace giving him the ability to be a part of something bigger than the room he is assigned to at the university’s Intermountain Cystic Fibrosis Center. "It helps me maintain something closer to the semblance of a real life," he says, "and I really appreciate that."
Bunn’s computer bears the stamp "In Memory of Christopher," dedicated to a young Park City High School graduate, Christopher Whitteron, who died of complications of cystic fibrosis in 1999. He was 20 years old.
Less than a year ago, Whitteron’s father, Jim, and his wife, Cheryl Fine, started "Christopher’s Closet," a foundation at the center that collects computers, games and crafts for cystic fibrosis patients at the hospital.
"Being in the hospital is almost like prison for these kids and adults (and) I had this dream that something needed to be done," says Fine. "So I started collecting computers last summer, calling friends, e-mailing people I know."
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Today, the Intermountain Cystic Fibrosis Center in the University of Utah Health Sciences Center and Primary Children’s Medical Center provides care to 425 pediatric and adult patients from Montana, Wyoming, Idaho, Nevada and Utah. There are 22 rooms for adults at the center, and Fine says she wants to equip them all with laptops because it’s a luxury item the families of cystic fibrosis patients often can’t afford, due to the high price of medical treatment. One week of medicine can cost as much as $10,000 for one patient, according to nurses at the unit. So far "Christopher’s Closet" contains 12 computers.
Jody Jacobs, the recreation therapist for the center, calls "Christopher’s Closet" a miracle. For years, she says she and nurses had been bringing in their own diversions for patients.
"My budget is so drastically low were so lucky to have them," she says of Fine and Whitteron. "It’s like an answer to a prayer Patients can’t believe it when they get a computer. They say, ‘Are you serious? No way.’"
Isolation from other patients, combined with progress in treatment and medication, have played a big role in keeping Kirsten Riley alive for 31 years 10 of which she confesses she didn’t expect to have. The time has allowed her to become an adult and get married, be a mother to stepchildren, act in community plays, and to create a near-normal existence in the larger world of Rock Springs, Wyo. and it’s given her something to miss when she leaves, especially when she must return to the center.
Growing up, Riley remembers playing with other cystic fibrosis patients in her ward at the Intermountain Cystic Fibrosis Center. They challenged each other to wheelchair races and to foosball in a room they designated as "Club Med," or bothered nurses for takeout orders instead of cafeteria food. "It was like a big slumber party," she says. "I could sit and talk to someone who could understand."
Riley notes that, ironically, this week she is residing in the old "Club Med" room. The other day she says she laughed when she realized she showers in the old game closet.
"It’s a lot different I don’t know anyone here anymore," she reflects. "Now I’m really just trading one room for another."
But with her access to the Internet, Riley can keep in touch with a greater community of friends and family or other patients in the next room or even in other parts of the country. Riley says one of her most important connections has been a kindred spirit named Kevin from South Carolina, whom she met in an online cystic fibrosis forum. Like Riley, Kevin is part of a new generation of older patients living longer lives, and she says she finds comfort in the fact that they share similar experiences. "He’s someone I can talk to about all of it the angst, being in adult relationships, everything," she says. "The biggest change in my life has been having this life outside."
In the afternoon, before leaving the ward, Jim Whitteron stands outside the old "Club Med," listening to a respiratory therapist rapidly pound on Riley’s back. It’s a 20-minute drumming that can leave bruises on some patients, and one of five daily "chest percussion" treatments Riley is prescribed in order to loosen the debilitating congestion in her lungs.
Whitteron knows the sound well — he says he used to perform the same treatment for his son at home in Park City — but he hasn’t heard it in more than eight years. This weekend is the first time he has visited the center since his son died.
"Instead of laying your hand flat against the back, you cup it," he explains, pulling his fingers together to illustrate his point. "So what you’re hearing is the echo of air. It’s very distinctive."
Whitteron and Fine say they hope to eventually expand "Christopher’s Closet" to other cystic fibrosis centers. The University of Utah estimates 1,000 new cases of cystic fibrosis are diagnosed each year and that there are 70,000 cystic fibrosis patients worldwide, 40 percent of whom are 18 or older. According to the hospital’s Web site, many can expect to live into their 30s, or 40s.
"It’s the opportunity to increase the quality of life for kids and adults," Whitteron says. "Treatment is so exhaustive and financially draining and families can’t afford much after hospitial and drug bills. I have first-hand knowledge of what they’re going through and it’s nice to be in a position to help them out."
To support "Christopher’s Closet," make donations to the University of Utah Cystic Fibrosis Unit. Mail donations to the University of Utah Cystic Fibrosis Unit at 2055 Bear Hollow Drive, Park City, Utah, 84098. For more information or to have donated laptops picked up, call (435) 649-8581.