Rare organ donation brings survivors together

Monday, September 29, 2003

ST. LOUIS -- A little lie almost cost LuAnn Schupp a chance at a rare lifesaving liver transplant and someone to share it with.

Last week, Schupp met 5-year-old cancer survivor Lucie Gleason, who received the remainder of the donated liver now inside her. The two exchanged gifts, enjoyed cake and smiled together, happy to be alive.

Earlier this year, the two benefited from a split-liver transplant. Schupp got about 60 percent of a liver from a deceased Missouri man, and Lucie received the rest.

But Schupp, 49, of Branson, nearly fibbed her way out of the long-awaited liver. She had been close to receiving a liver three times before a call came late one July night, when a hospital worker asked about her weight.

Schupp suffered from hepatic encephalopathy, a failure of the liver to process toxins such as ammonia, which then can pass through to the brain and disrupt thinking, much like it did on a road trip back from Texas. In that case, Schupp munched on a McDonald's hamburger -- and its wrapper -- and walked to her husband's side of the car when she was supposed to head toward a truck stop restroom.

"It's not fun," Schupp said.

When she received calls from the hospital, she usually was asked for her vital statistics -- not her weight. Doctors had told her to try to gain weight to better the likelihood she would survive a surgery.

"I was gonna fudge," Schupp said. "I said I don't see the doctors for months and I'll just put on the weight, then I just said, 'No, I'll tell the truth."'

It turned out to be to her benefit. Because she only weighed 101 pounds -- small enough that she could accept a partial liver -- she was told to head for St. Louis, five hours away.

Three teams of doctors worked to perform the transplant -- one to retrieve the liver, then separate teams on Schupp and young Lucie.

Dr. Will Chapman, director of abdominal transplants at Barnes-Jewish and St. Louis Children's hospitals, said Schupp's size was crucial because the procedure requires two recipients small enough to receive partial livers instead of entire organs. Schupp had struggled to gain weight because of her liver problems.

Only 159 transplants

The split-liver transplant has become more common in recent years, but is still rarely performed. Only four of the surgeries have been performed in the last 17 years at the St. Louis hospitals, Chapman said. Nationwide, 159 split-liver transplants were performed last year.

The procedure is possible because the liver is the only organ in the human body able to regenerate itself as needed.

Lucie was diagnosed in June with a malignant tumor on her liver. Although doctors believe it was present since birth, Lucie hadn't suffered any symptoms until late June. Her parents, Bill and Leah Gleason, say Lucie had a 104-degree fever and was noticeably weak.

After performing tests every several days, doctors finally found a lump near her liver. A chest CT scan confirmed the problem.

"The tumor just jumped out," Bill Gleason said. "Even I could see it. There's definitely something wrong there. That big thing in the middle of her body doesn't belong there."

Lucie's need for a liver was urgent enough that her mother was preparing to undergo surgery when the call came in with another donor.

Following the surgery, she was up and walking within four days. On her final day in the hospital, she shared a game of Monopoly with her grandmother.

On Thursday, Lucie spent much of the time before and after meeting Schupp running around with her 1-year-old sister, Jaime. After the meeting, the kindergartner was due for her third day at school, where she'd catch up with her 8-year-old sister, Alana.

"She's just becoming a regular kid again," Bill Gleason said. "She's all about just being a kindergartner and having a good time."

Lucie brought Schupp two roses and received "Stitch!: The Movie" in return. Schupp, who has 11 grandchildren, wasn't surprised that Lucie was a little shy to meet her among a large group of adults.

"She's a special girl and I pray that the cancer is out of her now," Schupp said. "She's got a long life to live. She's 5 years old, and that's just starting."

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