Needing Livers, Needing Answers

When they placed him on their waiting list for a new liver more than five years ago, UC Irvine Medical Center officials warned Wayne Beeman that his chance for a transplant could come with a moment’s notice.

“They said it could happen real quickly -- have your stuff packed and ready to go,” he said.

He’s had a bag waiting at his Fullerton home ever since.

Each morning, Beeman -- who finds a flight of stairs exhausting and worries that life-threatening complications could hit at any time -- clips on the pager officials gave him, loath to miss a potentially life-saving call.

On Thursday, he got another sort of call, one he never expected. It was the leader of one of his support groups, asking if he had heard the news: The UC Irvine program Beeman had counted on was closing.

As soon as he heard, Beeman, 59, a soft-spoken former school psychologist whose main hobby is singing in his church choir, sought counseling from a minister.

“I’ve been sitting in the foxhole now for five years,” he said, “waiting for the cavalry to come to the rescue.... It’s kind of like nobody showed up.”

UCI’s 12-year-old liver transplant program was disbanded Thursday amid revelations that it had refused inordinate numbers of livers offered for its patients. While UCI patients continued to die on the waiting list and others were added, many of the supposedly unsuitable organs were accepted by other liver centers and transplanted into their patients.

Interviews and documents obtained by The Times showed that UCI had not employed a full-time liver transplant surgeon for more than a year, and that the staffing shortage and other troubles dated back at least four years.

The program closed with 106 patients still waiting for new livers -- two of whom were hospitalized at UC Irvine’s medical center in Orange.

One of those patients was moved to UC San Diego on Friday to await a liver; the other is being medically stabilized before transfer to another center, according to hospital Chief Executive Ralph Cygan.

Many of the rest, like Beeman, must also find a new medical center willing to take them. Since UCI had the only liver transplant program in Orange County, they now may face longer commutes for medical care -- a significant obstacle for seriously ill patients who may require weekly or even daily care.

News of the scandal and closure has left patients and their families reeling.

Donna Wills, 62, said she’s been “numb” ever since her husband called her to the television late last week for a news report on UCI’s woes. Don Wills, 64, had been waiting for a transplant at UCI since June 2002.

“I just felt like people put a hole in the middle of the Earth and we were dropped off,” she said.

She takes little solace from the fact that her husband already is on the waiting list at UC San Diego, a move they made last year on the advice of one of his UCI doctors. How much time did he waste, she wonders, waiting for UCI to come through?

“It’s hard,” Wills said, her speech interrupted by sobs. “It’s hard when you have a terminally ill husband and every little minute counts.”

Now she is concerned about who will provide her husband’s regular and emergency medical care. She said trips to San Diego from their home in Lake Elsinore are arduous, taking as long as two hours.

She said her husband has consistently high ammonia levels in his blood -- a result of the cirrhosis that is destroying his liver -- and is often confused. The medication he takes to keep his blood pressure low makes traveling difficult. On top of that, she said, he has had heart trouble.

“I’ve always heard that UCI has some of the best doctors in the world; otherwise I wouldn’t have been there,” said the grandmother of eight.

“We put all our trust into you people,” she said of the program officials. “Why didn’t you tell me you are turning organs away? I wouldn’t have gone there.”

Because transplant candidates are prioritized regionally according to medical need, transferring to another center does not mean that UCI patients will sink to the bottom of those hospitals’ waiting lists.

But many are, for now, going from long waits to limbo, since they can’t get livers without being assigned to one of the active transplant centers in the Southern California region.

Perhaps complicating matters, St. Vincent Medical Center, with 75 patients on its list, announced its closure last week, after a separate scandal. That brings the number of centers serving adults in the region to four.

So far, about half of St. Vincent’s patients have been transferred to other hospitals’ waiting lists.

At UCI, Beeman was one of 48 registered candidates who had been waiting more than three years.

He suffers from cirrhosis of the liver caused by hepatitis C, a chronic viral infection that he contracted through a blood transfusion he needed after breaking 12 ribs in a 1988 car accident. His health has been declining, although he is more stable than many on the waiting list.

“I had heard some very good things about UCI,” he said. “They did good work. They seemed to have their ducks in a row.”

Many staffers at the program knew it had significant problems, but Beeman, like many other patients, was never told.

Although he said he had noticed staff turnover in the program, Beeman was “shocked” to learn about the lack of a full-time surgeon since last year.

He didn’t know the program had fallen far below state and federal guidelines requiring a minimum number of transplant surgeries each year to maintain proficiency. And he didn’t know that the few patients who obtained transplants were dying at a significantly greater rate than at other programs in the region.

From 2002 to 2004, UCI surgeons transplanted eight livers each year, less than half the 18 required by the state to maintain proficiency, and four fewer than federal requirements. So far this year, five liver transplants had been performed.

“I wish they would have told me,” he said. “It definitely might have changed what I did. I would have been talking to my HMO about my options, because there are financial considerations for me. I wish I could afford to go anywhere but I can’t.”

Beeman said he had been told that a patient without insurance coverage might be charged $300,000 for a liver transplant.

Lawrence Eisenberg, an Irvine attorney representing clients in current litigation against the liver transplant program, said “UCI had an ethical obligation to give full disclosure to the patients it was accepting into the liver transplant program.”

Added Eisenberg, who also represented clients in the UCI fertility clinic scandal in 1995: “If you were a liver candidate and needed a transplant for survival, would you sign up with a center that did about half of the federal minimum guidelines on an annual basis?”

Beeman said he had faith all along that when his need became desperate, UCI would get him a new liver.

Asked how he feels now, he is brief: “Depressed,” he said. “Stress is bad for someone with my condition, so I’ve really tried not to get angry.”

On Friday, Beeman got a call from a UCI transplant program staff member, someone “I’ve gotten to talk to a lot over the years.” He broke the news Beeman already knew. And he said UCI would help him get a transfer elsewhere.

But “it’s not an overnight process,” said Paul Silva, a spokesman for St. Vincent’s, which is still seeking other centers for more than 30 of its former patients.

“They have to be accepted, evaluated. Records have to be filed at the new center. We started with the patients who needed a liver in the next couple of weeks and worked from there.”

UC Irvine officials say they too are hard at work arranging transfers.

UC Irvine Chancellor Dr. Michael V. Drake on Friday said hospital officials had contacted the 50 sickest patients on the waiting list and given the top cases to managers “to make sure they can be in touch with a proper transplant facility.”

Beeman and his friends now look back regretfully on his years of waiting. He was at the ready every day. He never felt he could take a European vacation. He was always anxious about being any distance from the hospital.

“His whole life really revolves around his condition,” said Linda Safford, a friend who has known Beeman since before the car accident and fateful blood transfusion.

Beeman said he had been doing all he could to help his cause. He took meditation to stay calm while waiting for test results. He joined support groups to talk to others in the same situation. He went regularly for checkups and testing.

Now he is troubled by doubt.

Is it possible that UCI declined a liver suitable for him?

Beeman closed his eyes, and thought.

“I guess I’ve learned that life can be unpredictable,” he said. “Now it’s going to take some scrambling and faith that things will work out.”

Times staff writer Charles Ornstein contributed to this report.