San Francisco Chronicle - Friday, October 23, 1992
Reynolds Holding, Chronicle Legal Affairs Writer

After almost six years of taking painful drugs, clinging to hospital care and waiting to die, he said he found out this summer that it was all a mistake. Doctors who had told him in 1986 to prepare for death from AIDS were suddenly saying he did not have the disease or HIV, the virus that causes it.

"It was as if I had been in prison for six years and the warden came up to me and said, 'Well, buddy, we made a mistake -- go and live your life,' " Kuivenhoven said yesterday.

Getting on with life is proving to be hard for the shy and gaunt Kuivenhoven, 53, of San Francisco. He still thinks of himself as an AIDS patient, suffering from painful side effects of the drug AZT. He struggles to get by on a government check of $600 a month.

So he is taking Kaiser Permanente Medical Center to binding arbitration, the only legal recourse under the Kaiser contract, in which the right to sue is limited.

Spokeswoman Kirsten Cherry says Kaiser "just got the claim" and will need more time to review six years of medical records before commenting on Kuivenhoven's case. Beyond that, she says only that the tests for determining the presence of HIV have changed significantly and frequently during the past six years.

SIMILAR CASES

Kuivenhoven is not the first person to contend that he was told mistakenly that he had AIDS or HIV. Kaiser is facing arbitration with two other patients who claim that they were victims of AIDS misdiagnoses, according to Cherry. Last year, a San Francisco jury awarded 45-year-old Mitchell Welenken $228,000 for a false diagnosis of HIV in a case that did not involve Kaiser. Faulty tests, mixed-up blood samples and inexperienced doctors have yielded several similar cases since AIDS was first recognized in this country more than a decade ago.

But such mistakes typically are discovered within weeks or months.

Kuivenhoven's ordeal began in August 1986, when he entered Kaiser affiliate Santa Teresa Hospital in San Jose complaining of shortness of breath and weight loss. After a battery of X-rays and blood tests -- but, he says, no test for HIV -- doctors told him that he had pneumocystis pneumonia, considered at the time a sure sign of AIDS.

'FELT GUILTY'

"I was overwhelmed. I felt guilty, because I thought I had exposed myself to that virus and had shared it with my partner," said Kuivenhoven, whose lover of 10 years, Jeffrey James Meyers, died of AIDS two months ago at age 32.

According to Kuivenhoven, doctors ordered him to stop working as a skin-care specialist in San Mateo and to "eliminate all stress in my life, because I was dying." So he sold $10,000 worth of professional equipment for a couple of hundred dollars, moved from San Jose to San Francisco "and waited to die."

His treatment began immediately at Kaiser in San Francisco. He says the pentamadine he was given intravenously created welts on his veins. When he was switched to pills, they infected his lungs.

In 1987, he started taking the newly released drug AZT. He says it gave him high blood pressure, throbbing headaches and shooting pains in his feet. To dull the pain, he took a slew of pain-killers. When they kept him up at night, he said, he was forced to take sleeping pills, bringing on an addiction he is still fighting.

Through it all, he suffered in silence. "I didn't really share with people, because having AIDS is a stigma in itself," he said. "It's like V.D. You don't walk around letting people know you have it."

As time passed, there were no revelations for Kuivenhoven, no frantic urges to make the most of remaining time. He and his lover scraped by on a few hundred dollars a week, moving from apartment to apartment as the rent became too high to pay. He remained mired in depression, afraid even to venture more than a few minutes beyond the hospital, where he received treatment at least once every two weeks.

Then, on June 12 of this year, he got "the letter" from Kaiser. "I thought it was bad news again. It usually is," he said.

Instead, the letter asked him to come in for tests, because a routine check of his T-cell count, which drops precipitously in AIDS patients, had risen sharply.

Several days after the tests, Kuivenhoven said, his doctor called to say there had been a mistake. Subsequent tests confirmed that Kuivenhoven does not have the AIDS virus, according to his attorney, Paul Wotman.

The doctor "told me I should rejoice," Kuivenhoven said.

"I didn't know how to respond. I was more angry than happy. And now, most of the time, I'm just grieving."

CAPTION: PHOTO John Kuivenhoven says he needlessly took painful drugs/BY BRANT WARD/THE CHRONICLE

Always watch for outdated information. This article first appeared in 1992. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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