University Daily Kansan / Tuesday, November 20, 1990
5
Transplant patient gives thanks during holidays
By Courtney Eblen
Kansan staff writer
Five months after she was told she would not live to celebrate Christmas, Carole Baker is counting her days.
She is home, getting her Overland Park house ready for more than 20 relatives who plan to join her.
In addition to the turkey and brisket, the potatoes and stuffing and the slice of pumpkin pie slathered with whipped cream. Baker will down her daily dose of Cyclosporin and steroids.
Since her liver transplant earlier this month, she must take the immunosuppressants daily for the rest of her life. They will help her combat rejection of the new liver.
Baker, a 43-year-old mother of five, came home last week from the University of Kansas Medical Center. She is the 10th patient to receive a liver transplant at the Med Center.
Baker's illness had been diagnosed as inoperable cancer in June, while she was living in Independence. Chemotherapy would have been ineffective against the tumor that had taken over her liver. She recalls being told that she had six months to live.
"When they tell you it is inoperable, it's as if you're given a death sentence." Baker said.
Months went by and more tests were done. The cancer still was there, but it had not spread. Her doctor told her she would be a prime candidate for a liver transplant.
"Then there was a sense of hope," she said.
Baker was put on a waiting list. She began chemotherapy treatment to keep the cancer from spreading, and she moved from Independence to Overland Park to be closer to the Med Center.
On Nov. 1, just 22 days after Baker had been put on the waiting list, a donor was found.
The liver transplant surgical team at the Med Center, headed by James Forster and Romano Delcele, removed the donor's liver and transplanted it into Baker during a 12-hour surgery.
Forster said Baker's transplant was the first at the Med Center that involved removing an organ containing inoperable cancer. The only complication in the surgery was cleaning out a blockage from Baker's portal vein, which leads out of the liver.
Liver transplants are becoming more common
but no less risky, Forster said. Since the Med Center's first liver transplant in February 1989, all 10 of the recipients have left the Med Center and are doing fine.
"You can't ever predict complications." Forster said.
"She sailed through." Forster said.
He said the worst complication was rejection, in which the body's immune system reacts to a transplanted organ as it would to an invading cell or has had no such problems, even during surgery.
Baker's stay in the Med Center lasted only 13 days—the shortest stay of any of the 10 transplant patients, Forster said. She was released from the Med Center on Nov. 14.
The opportunity to have Thanksgiving dinner with her family — and at home — had not even entered her mind until after the surgery, when she was told she could go home for the holidays.
Her children, brothers and sisters and their names will be driven from across the country for this reason.
Baker also will get to see her 1-month-old grandson for the first time.
KU researcher helps emphasize importance of independent life
By Yvonne Guzman
One morning last month, facilities operations workers began work on a routine assignment: preparing the ground outside the Dole Human Development Center for a sidewalk.
Kansan staff writer
Their plans changed later than morning when Mary Prewitt of the University of Kansas' Office of General Counsel got a telephone call questioning why there were no curb cuts in the sidewalk.
The sidewalk never was planned to have curb cuts, said Allen Wiechert, director of facilities planning. But after learning of the call from Glen White. Wiechert helped change the plans.
White, who uses a wheelchair, said he telephoned Prewitt not because of his own disability but because it was his job to look out for the rights of disabled people
"Here you have a $10-million building and a sidewalk that is inaccessible." White said. "They were going to pour the cement the next day, so I had to hurry."
The center is bordered by a sidewalk as accessible as the building, which was hailed as a landmark in research and service for people with disabilities.
It was not the first time White found problems before they were set in concrete. Since he came to KU in 1985 as a doctoral student in human development and a research assistant for the Research and Training Center for Independent Schools, he became a teacher as the University's watchdog for disabled people.
Bob Turvey, chairperson of the University's Architectural Barriers Committee, said White had an unusual talent for seeing how the University could improve accessibility — an important asset during a time when the University must, by law, meet the needs of disabled students and faculty.
The Americans with Disabilities Act, which became law in July, expanded the definition of disabled and, to a certain extent, redefined some of the obligations of the University, he said.
"And he's quick to point out what those responsibilities are at times when there are questions." Tullis said.
White is just as likely to point out responsibilities even when there are not questions.
A set of job fairs in October prompted swift retribution from White, who was the only person to tell the administration that the schools conducting the fairs were doing so in violation of federal law.
"It is discrimination clear and simple," White said. "We could have nailed them to the wall on that side."
Turvey agreed.
Overcoming tragedy
White was born in 1949 in Rochester. Minn
White was kidnapped in Rochester, Sault. He was disabled when he was in a car accident. He was 15, and the only one of the eight people in the car who was injured permanently.
"We hit the tree so hard the headlights were facing each other," he said. "It was really hard."
But White graduated from high school on time, with the help of an intercom that brought his class to a close.
He went on to do undergraduate and graduate work at Winona State University in Minnesota.
They were married in 1977. They adopted a daughter Filiha in 1979 and a son Feri in 1981
When he heard about some of the research opportunities at KU, he was interested almost immediately. He had begun to feel elated in his job as a recreational therapist at the Mayo Clinic, he said, because he was not able to advance and do different types of work.
"Within a space of two and a half months I quit my job, and I moved down here," he said.
White's doctoral work has allowed him to study the effects of housing changes on people with disabilities, both on their independence and on their ability to integrate into the community.
His work for the Office of Research and Training, the Center for Disease Control and various committees and personal projects have made him a crucial voice in an evolving environment.
During the course of his doctoral work. White helped secure wheelchair-accessible entrances for a man who had not left his home by himself since he was injured 12 years earlier. He's begun work to improve seating at Royals Stadium so that people can sit on the floor in any section, and he has convinced the University to adapt bigger bathroom stalls for wheelchair users in campus buildings.
"A lot tend to assume the problem is with the person with the disability." White said. "I think the problem occurs with the environment. By changing the environment you can enhance what the individual can do. If you can empower them, that's really an exciting thing."
"People with disabilities need empathy, but they don't need sympathy or pity," he said. "Many people with disabilities are fully independent. They deserve the opportunity to fail. We all make choices, sometimes not very well. Failure is part of the process of living; that's what independence
White said the key was trying to let people know that there was nothing wrong with people with disabilities.
But changing attitudes is just as important.
Doctoral student Glen White has helped bring about changes for disabled people.
is all about."
New choices for disabled
Attitudes about people with disabilities have gotten better. And White's work at KU and elsewhere has contributed to what James Budde, director of the Office of Research and Training, says is a new way of thinking about people with disabilities.
People with extremely limiting disabilities used to have two choices: a nursing home or dependence on family. That's not true anymore, Budde said.
"There's a new image of people with disabilities," Bouldie said. "The funny thing is, I think Glen was not one of them."
But White doesn't go that far.
His wife would add that he's a good father to their two children, who, when they're not doing their chores, are playing on the lawn in front of her and met cul-de-sac on the northern edge of Lawrence.
"I'm just an ordinary guy," said White, who plays raquette, reacts, plays the guitar, writes songs and cooks.
He said he wanted to do what he could to help, even if it might take him away from KU. After completing his doctorate in the spring, he may go to college and be able to disable people of acquiring secondary intakes.
Afterward, White said he would like to stay at kU for a little while, despite joie offers from a travel agency.
"One of my goals is to be a competent researcher." he said.
Not very many wheelchairs users are researchers, he said, and the research community may need more.
"I just want to make full use of what I have," White said. "I'll kind of be a radical in my old age, I guess . . . I really want to make a positive change in my world."
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