long register story on UCI kidney bingo, reposted to bypass registration lameness

Waiting in the dark: Patients on UCI’s liver-transplant list
UCI liver patients weren’t told how likely it was that they would receive a transplant. Some were rejected and went on to get livers at other hospitals.

Stories by BLYTHE BERNHARD and CHRIS KNAP

The Orange County Register

For many patients, life on UCI Medical Center’s liver-transplant waiting list was defined by periods of fear, helplessness and, ultimately, abandonment.

According to interviews with more than two-dozen liver patients and family members, patients often were afraid to ask questions, feared losing their place in line, and rarely if ever saw a surgeon. None were told the program had struggled for years without a full-time surgeon.

Patients said the surgeons came across as arbitrary and autocratic. Auditors for the federal government said treatment decisions were made without telling patients. Leaders of a patient support group said hospital staff pushed them away, effectively ending their meetings.

The doctors who ran the program declined to be interviewed for this story, but Dr. Michael Drake, chancellor at UCI, defended their motives.

“This is people, regardless of what it looks like, working hard to help the desperately ill. … They were perfectly well-intentioned,” Drake said.

Like transplant programs at other hospitals, UCI required patients to take a battery of tests to establish the severity of their disease. Those who met the criteria – at the end stage of liver disease but healthy enough to survive a transplant – got a pager to summon them when a matching organ was available.

Unlike most other programs, UCI had failed since 2001 to meet the federal standard of 12 transplants per year. UCI doctors rejected organs ultimately used by other hospitals and performed as few as seven transplants a year – despite a waiting list that grew to 106. For every patient who got a liver at UCI, two died waiting. At other hospitals the ratio is the opposite: two transplants to every death.

When the hospital lost its transplant surgeon, federal officials said, it struggled on with two off-site surgeons – and continued to add patients to the list. Other hospitals have shut down their programs when faced with similar problems.

New interviews with 28 liver patients and their families, most of whom had never talked publicly, portray a program in which patients were bullied, kept in the dark about their actual chances of receiving a liver, and in some cases bluntly rejected – only to find a liver elsewhere.

Names on the waiting list are confidential. Most of the patients interviewed were those who contacted the Register after reading stories – patients who did not receive a liver at UCI. Five patients and survivors who spoke in support of the program received a liver more than seven years ago. UCI declined to help identify more recent recipients.

An official at one leading U.S. program said that UCI gave the people on its list “false hope.”

“Why would you add people on and have over 100 people on your waiting list?” said Susan Umerley, an administrator in organ transplants at Mayo Clinic in Jacksonville, Fla. “Those numbers are very telling. They shouldn’t have had a program. … Seven transplants? That’s unbelievable.”

Dr. David Imagawa, the current chief of transplantation, and his predecessor, Dr. Sean Cao, declined repeated requests to be interviewed for this story. However, in an interview Nov. 8 – two days before the transplant program lost its Medicare certification and was forced to shut down – Imagawa acknowledged that the program had not met expectations and added that “all transplant programs go through ups and downs.”

UCI officials blamed a shortage of liver surgeons and said they struggled to find new doctors.

“Recruiting the additional surgeons that we needed for the program simply took longer than we had anticipated,” Ralph Cygan, chief executive of UCI Medical Center, said last month. Cygan was placed on leave Nov. 16 while a panel investigates.

Despite placing Cygan on leave, Drake described him as “earnest, honest, hardworking and dedicated” and said he believed others in the program were also trying to do the right thing.

Told that patients reported feeling misled, and in some cases, mistreated, Drake said the panel will investigate that. “That would be something that would be intolerable to me,” he said.

THE ‘JESUS TALK’

Transplant surgeons must make life or death decisions almost daily: to accept or reject donated organs; to add or remove a patient from a list; to schedule a transplant surgery.

Those decisions determine not only who gets a liver, but in some cases, who lives and who dies.

If that sounds as if the doctors must play God, patients say, it’s not far off the mark.

Dr. Imagawa “just said, ‘You’re too old, and besides I don’t have a liver for you,'” recalled Beatrice Isabelle-Graves, who was 71 when Imagawa rejected her for the waiting list in 2002.

A nurse at UCI later pulled Isabelle-Graves to the side and quietly told her she’d never get a liver at UCI. Isabelle-Graves made an appointment at USC, and three months later she was on the operating table, receiving a new liver.

“They took such good care of me. They really wanted me to survive. It was so different from the way it was at UCI,” said Isabelle-Graves, who had contracted hepatitis C during a blood transfusion in 1984.

Isabelle-Graves, 74, said she feels 20 years younger.

“I’d like to emphasize that not even until this day has any of the doctors or nurses at USC even mentioned my wife’s age,” Robert Graves said. “Maybe (Imagawa) realized he was building up a waiting list that had too many people on it.”

Bioethics papers posted by the United Network for Organ Sharing, the Richmond, Va., agency that coordinates liver sharing nationwide, suggest that doctors should consider age, complicating factors such as obesity and a patient’s willingness to comply with treatment before approving a transplant.

But some UCI patients complained that surgeons’ decisions came across as punitive.

Earlier this year, 20-year-old Jenny Jessup came to UCI with severe liver disease brought on by a hepatitis-like syndrome. The young woman was scared and difficult, questioning every test she was given, her mother Billie said.

Imagawa came into her room. “He had his hands folded, and he said, ‘We’re having a Jesus talk and I’m Jesus,'” Billie Jessup quoted Imagawa as saying. “He said, ‘You are not going to get a liver transplant. You don’t deserve it; you treated my staff rotten, and you’re not getting a liver transplant.'”

Jenny Jessup’s liver recovered, but she is now waiting for a bone-marrow transplant at Cedars-Sinai in Los Angeles.

Billie Jessup said she complained to the office of the chief of the medical center, but no one responded. “The way we were treated at UCI was just a nightmare,” she said. “I couldn’t get her out of there fast enough.”

Transplant surgeons at other hospitals said it needs to be clear to patients that slots on the list are based on medical criteria.

“The very hard part is to tell somebody no,” said Dr. Daniel Katz, liver-transplant surgeon at the University of Iowa.

Katz said telling a patient they don’t deserve a liver “seems like a very unfortunate choice of words to me. … What’s wrapped up in that statement is some sort of judgment about a patient’s value. We don’t make our decisions for candidacy based on a patient’s value to society.”

Some patients who received livers said that beneath Imagawa’s blunt demeanor is a man who cares deeply.

Grace Shapiro of Fullerton said her husband, Arnie, who received a liver in 1997, was devoted to Imagawa, whose transplant gave him seven extra years of life. Arnie Shapiro died earlier this year, of causes unrelated to his liver.

“My husband called him ‘The great god Imagawa,'” she recalled. “Dr. Imagawa came across as an arrogant individual … but deep down he is a very caring person.

“I know for a fact Dr. Imagawa stood on a milk crate for 18 hours to do my husband’s surgery.”

LOSING YOUR PLACE

End-stage liver patients at UCI described a frightening tightrope walk. If their health deteriorated too far, UCI might cross them off the transplant list. But if they were too well, they wouldn’t qualify either.

Laura Ambriz’s mother, Helen, got her pager two years ago, after a diagnosis of liver cancer. A year later, Imagawa took it away, saying she weighed too much.

In a complaint filed with the hospital Nov. 3, Laura Ambriz described how Imagawa told her mother, “Do not even think about a transplant because you’re not going to get one. You are on the road of no return.”

Ambriz complained that Imagawa treated her mother rudely and made her cry.

“Why did they give her a pager? They were giving my mom false hope,” she said. “She’s been wasting part of her life waiting for nothing.”

In December 2003, Cheryl Rader’s husband, John, scored 38 out of 40 on a scale of transplant necessity.

Rader stayed at UCI for a month, thinking his new liver was on its way.

“(UCI) told me that they were getting (liver) offers but they weren’t right,” Cheryl Rader said.

Imagawa performed surgery on Rader to drain bile from his liver, Cheryl Rader said. As a result, Rader’s transplant score went down.

“We knew we would never get a liver at UCI. He was not sick enough to get high on the list again and too sick to not need a new liver. It was constantly a Catch-22,” Cheryl Rader said.

A live donor volunteered to give up part of his liver to John Rader. Surgeons at USC performed the transplant in June 2005, but Rader died from a bacterial infection three months later.

Cheryl Rader wonders if John would be alive today if he had received a transplant at UCI in 2003.

“They’re playing God with people’s lives,” Rader said. “If they weren’t qualified to be a liver-transplant center then they shouldn’t be one.”

AN UNSEEN SURGEON

Although patients had differing opinions about Imagawa, while chief of the program he was a powerful presence. His successors, by contrast, were almost invisible.

In 2001 Imagawa had a heart attack and stepped down as lead surgeon in the transplant program. Imagawa had been transplanting as many as 24 livers a year. Under his replacement, Dr. Sean Cao, the number of transplants fell to eight.

Yolanda Lopez of Garden Grove, who suffers from hepatitis C and got on UCI’s waiting list in 2000, said patient care seemed to slip when Cao took over.

“Dr. Cao, it seems like he wasn’t really into you,” Lopez said. “Dr. Imagawa is a caring person. You could feel him from his heart. I didn’t feel that with Cao.”

Dr. Jorge Ortiz, a surgeon at UCI from 1998 to 2000, said Cao performed many other surgeries and might not have had the time and support to do transplants.

Lopez has since transferred to the waiting list at Cedars-Sinai.

“The coordinators were much nicer,” she said. “They explained more to me than the coordinators at UCI ever told me. The social worker was really nice. He told me if I need anything that he’s there. I never met the social worker at UCI.”

In November 2002, UCI officials brought in two outside doctors to investigate why the number of liver transplants at the center had fallen and why survival rates were below average. UCI officials have so far declined to say what that inquiry revealed.

But the hospital continued to add people to the list.

Patients said Cao’s transplant coordinators warned them they could get bumped down the list or placed “on hold” if they didn’t obey the hospital’s rules. That atmosphere scared some patients, who hesitated to ask too many questions.

At about this time, in 2003, a support group for liver patients steered by Arnie and Grace Shapiro was forced out of the hospital, patients said.

Grace and Arnie Shapiro said they were printing 130 fliers a month, and bringing them to UCI for mailing. Between 50 and 100 people, most anxiously awaiting a liver, would attend the meetings.

“The people in charge did not feel comfortable with that many people,” Grace Shapiro recalled. “In late 2003 they said they weren’t comfortable with us having the (patient) list. Then they said no meetings until after the holiday. Then they said they only wanted the meetings for those on the list; not people who had received a liver.

“After we were asked not to be there, and not to participate, that was the end of the meetings,” Shapiro said. “We felt bad about it…. We felt that what we were doing was a way to give back…”

Jim Hines is grateful to Imagawa for the liver transplant he received eight years ago. But he confirmed that Cao’s transplant coordinator stopped the support group meetings.

“I can understand why she canceled them. So patients could not cross-talk about their cases and wait time,” Hines said.

Today, many patients believe UCI misled them about the program.

“We didn’t know they were rejecting livers. We didn’t know they didn’t have the staff to do it. We were in the dark,” said Rasmi Ihmed, whose brother, Ribhi, 51, died this year waiting for a liver.

“We were under the impression that my brother was going to get a liver.”

In 2004 Cao left the program to go into private practice. Dr. Marquis Hart was named director.

UCI’s Web site states that Hart “comes to UCI from UC San Diego Medical Center.” In fact, Hart was still working full-time at UC San Diego, but had agreed to help out at UCI. The Register was unable to ascertain how many transplants Hart performed at UCI. Hart did not respond to repeated requests for an interview.

“All of a sudden Dr. Hart was involved but you could never reach Dr. Hart,” said Jim Smethers, 58, who applied for a transplant in 2004. “That entire program, and I was on it for a year, it wasn’t being run by any doctors at all.”

Experts interviewed for this story said it wasn’t fair for UCI to add to its list as the transplants dropped.

“They should have never taken these people and put them on the list. They should have stopped the program altogether and said, ‘We’re not able to provide you with a liver,'” said Kindra Ruocco, who interviewed transplant candidates for her documentary, “Silence is Deadly: Living with Hepatitis C.”

Chancellor Drake said UCI officials had hoped to rebuild the program, and had already recruited a new surgeon, who was scheduled to start next year. Using Hart as an interim director, and adding more patients to the list, are reasonable actions when viewed in that light, Drake said.

But Richard Farmer, 53, who applied for a place on the transplant list just three days before the program shut down, disagreed.

“I find it very hard to believe they couldn’t see the hammer falling,” Farmer said. “They gave me a false feeling that everything was moving well. They were playing with my life.

“It’s a travesty that these people would do this, to mislead not just me but I don’t know how many others,” Farmer said, his voice shaking. “To lead them down the path of hope, knowing at the end that they’re toast.”

Comparing programs

Hospital	Transplants performed (2004)	Transplant surgeons	Waiting list	One-year survival rate
UCI Medical Center	8	2 (part-time)	106	69%
Mayo Clinic, Florida	245	6	65	91%
University of Iowa	17	2	50	97%
USC	81	6	282	83%