Go window-shopping in downtown Mill Valley and you may discover a very odd display at Lando, a store where fashionable trousers and blouses share space with blown-up pages of information about, of all things, kidney transplants. The owner, Joan Lando, is a woman on a mission to save lives, and she’s using every means available.
A tall, slim, intense woman with long dark hair, Joan has a 31-year-old daughter, Soraya, who was born with a congenital heart defect. In 2003, an operation to fix Soraya’s heart went terribly wrong and she required many blood transfusions. Immediately, her kidneys began to fail. Soon she had to rely on dialysis to stay alive. “Dialysis was awful,” says Soraya, a former teacher in the school at Marin County Juvenile Hall. “I was throwing up almost all day long. I was way too tired to work.”
Her parents accompanied her to each treatment. “We saw what most families don’t see,” Joan said. “People curled up on Barcaloungers getting sicker and sicker.” Many dialysis patients live only two to five years, though some survive for longer.
Both Joan and Soraya’s father, Davood Kohanzadeh (who owned Davood’s Restaurant on Miller Avenue some years ago), offered to donate one of their kidneys to their daughter. But that wouldn’t work, her doctor said: because of all the transfusions Soraya had received, her body had developed such a high level of antibodies that it would reject a kidney even from her mother, the closest match. Joan felt that her daughter was dying and she was desperate.
Then a nurse told Soraya and her mother that some existing medical techniques might help. Going online, they learned about a procedure developed at Cedars-Sinai Medical Center in Los Angeles wherein certain drugs and immunoglobulin are employed to modify a recipient’s rejection mechanism, making it easier for them to accept kidneys from donors. Soraya found out that Medicare would pay for the procedure. They called, they registered, and in two weeks, mother and daughter were undergoing testing. Joan could be a donor.
The rest was easy. On May 16, 2006, a surgeon snipped a healthy kidney from Joan’s body and in five minutes another surgeon sutured it into Soraya’s. “Right away it was making urine; it was working,” Joan says. Both women are healthy and well.
After the transplant, Soraya’s Bay Area kidney doctor insisted he had not known about the Cedars protocol, known as IVIG or intravenous immunoglobulin.
The story doesn’t end there. Both Joan and Soraya want dialysis patients to know a kidney transplant might succeed even if their doctors have told them it won’t. Get in touch with Cedars-Sinai or Stanford, they advise, or visit their website, sevenluckystars.com
Dr. Dolly Tyan, codeveloper of the IVIG protocol and now at Stanford University School of Medicine, estimates that of the 70,000 people in the United States waiting for a kidney donor, perhaps 20,000 could be eligible for a transplant. There are currently 159 dialysis patients in Marin County, according to Allison Kregness of the Western Pacific Renal Network. About 1,600 Marinites are on disability because they suffer from end-stage renal disease.
Joan and Soraya have a theory as to the reason more patients are not told about the transplant: money. Since 1972, Congress has required Medicare to pay for dialysis for anyone in the U.S. who needs it—a per-patient expense of roughly $80,000 a year. Some kidney specialists have invested in dialysis clinics; others get fees for referring patients to clinics. While dialysis is necessary for some patients, transplants are usually a better option. “The great financial incentive is to discourage people from getting a transplant,” says Joan. “Doctors don’t want to talk about this conflict of interest. When they tell me about it, they say, ‘Don’t quote me.’ ”
While Soraya is well, Joan’s campaign to tell the world about IVIG continues. “There is so much unnecessary suffering and death,” she says. “If a nurse had not told us, Soraya would not be here.”