From the San Francisco Chronicle:
Victoria Colliver, Chronicle Staff Writer
Thursday, May 11, 2006
Pleasant Hill resident Bonnie Fadavi, a transplant candidate at Kaiser Permanente’s troubled Northern California kidney unit, has been waiting for a new organ for six years.
Now she has decided that’s too long.
On Wednesday, after Kaiser said it would pay for transplants at other hospitals, she started making arrangements to be transferred to UC San Francisco to get a kidney.
News reports about administrative problems and excessive delays in getting kidneys since Kaiser started the transplant program at its San Francisco hospital in 2004 have raised questions about whether the center is capable of caring for the 2,000 members waiting for new organs.
“I would much rather go to UCSF. If I go back over to UCSF, I think I’d be at the top of the list,” said Fadavi, 47, a former legal secretary whose kidneys were removed in 1992 due to severe kidney stones. She received a kidney in 1994, which functioned before failing in 2000. She now undergoes dialysis four times a week.
Kaiser kidney patients tell stories about lost paperwork, poor communication with staff members and problems transferring their seniority from other institutions. Some believe the new center was more focused on getting exceptional results than increasing their numbers of transplants.
Kaiser officials defend their program, citing a post-transplant success rate of 98.9 percent. Only one patient has died after a transplant.
“We are absolutely ready to address any concerns or problems that may have arisen in our program,” Mary Ann Thode, president of the Northern California region of Kaiser Foundation Health Plan and Hospitals, said in a news conference Wednesday.
While apologizing to patients who might have experienced communication and administrative problems at the center, Thode called it a “top-notch, quality program.”
Most dialysis patients recognize that the wait for a new kidney is long and fraught with uncertainty and complications. But the reports of problems at Kaiser prompted some patients to question whether their surgeries were unnecessarily delayed.
“I feel that I’ve been lied to. I feel the transplant department has put several obstacles in my path,” said Darlis Beale, 57, of Lincoln, northeast of Sacramento. Beale also called UCSF on Wednesday to see how to transfer. Beale, a retired teacher who has been waiting for a new kidney for eight years and four months, believes she’s been delayed for at least two years because she fell slightly short of being an optimal transplant patient.
“They were trying to build a reputation, and I was not going to be their best candidate to build a reputation with,” she said.
Dialysis patient Jessica Parker of Oakland has staged protests twice in the past two weeks in front of Kaiser’s main hospital in San Francisco.
“There needs to be major changes in the transplant process, and they need to make it transparent to the public. They have to make sure people get the care they need,” Parker said. At 31, she said she is young and healthy enough to protest for fellow dialysis patients who do not have the energy.
Parker said she plans to change her health insurance in July and seek care at UCSF. She said Wednesday’s promises of reforms haven’t persuaded her to change her mind.
Parker, who suffered kidney damage from lupus, said she has experienced numerous delays in testing at Kaiser’s transplant center to find out if her father could be a donor.
Most patients said they wanted to make sure they were getting a fair shot at a new organ. They cited prolonged kidney dialysis as not only a major disruption in their lives but as a great risk to their health. The blood-cleaning ability of mechanical dialysis is far inferior to that of real kidneys.
“It’s not really a life. It’s just pushing death back,” said Celia Scull, 60, who has been waiting for a new kidney for two years and said she would prefer being handled by a more experienced team.
Paul Whitney of Roseville (Placer County), who has been on dialysis for two years, said he has three potential donors with his same blood type lined up.
“Nobody has contacted them yet. All it is is a simple blood test,” said Whitney, 68.
Kathleen Wong of Oakland, who has been waiting for a new kidney since 2001, said she had special circumstances, and her doctors recommended she be bumped up on the list. But the transplant center knew nothing about her priority change. Wong said she has to advocate for herself because the center gives her the runaround.
“I am just waiting. I am supposed to be at the top of the list,” she said, speaking from a dialysis center in Oakland. “If their transplant services were not 100 percent operational … they never should have removed us from the other transplant list.”
After seven years of waiting for a new kidney, 74-year-old Corra Mayo is worried that she is running out of time.
“I kept saying they’re waiting for me to die so they don’t have to do me. I can’t do it at 100,” said Mayo, a former licensed vocational nurse who lives in Waterloo, outside of Stockton.
Mayo nearly got a kidney last week, but she said her kidney specialist feared she was a cardiac risk even after a cardiologist cleared her for surgery. She wants Kaiser to pay for a second opinion and surgery at UCSF.
“I think they’ve got dollar signs in place of their hearts,” she said.
Kaiser officials have maintained that quality of care, not money, was behind the decision to create its own transplant program.
San Francisco’s CBS 5-TV first reported problems in the transplant center May 2. The next days, the Los Angeles Times began a series of articles on the center.