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After 20 years with HIV, he lives on, serves others

Saturday, June 09, 2001

By Anita Srikameswaran, Post-Gazette Staff Writer

Today, August "Buzz" Pusateri, a 62-year-old who lives in Friendship, will reach a personal milestone.

On June 9, 1991, he was admitted to a hospital with his first symptoms of AIDS. Not only has Pusateri survived the disease for a decade, but doctors say the human immunodeficiency virus, HIV, has been in Pusateri's body for at least as long as the recorded history of the disease, which marks its 20th anniversary this year.

August "Buzz" Pusateri, 62, of Friendship, has lived with HIV -- the human immunodeficiency virus -- for 20 years, which is as long as there has been a record of the disease. (John Beale, Post-Gazette)

His survival stuns people who remember, as he does, the early days of AIDS.

"I really am lucky to have lived as long as I have," Pusateri said. "This disease should have killed me in a few years."

The official start of the AIDS pandemic is often traced to a report on June 5, 1981 -- 20 years ago this week -- by the federal Centers for Disease Control and Prevention. The CDC noted that five gay men from Los Angeles had come down with an unusual form of pneumonia.

Since then, almost 22 million people worldwide, including more than 4 million children, have died from AIDS, and 36 million people are living with HIV, the virus that causes it.

Pittsburgh's gay men, like those in other cities, began whispering about the strange, lethal disease that seemed to be targeting their community in the early 1980s. Pusateri recalled hearing his friends saying that in five to 10 years, it would kill many of the people they knew.

"Of course, at that point, I thought they were exaggerating," he said.

Still, Pusateri took the danger seriously.

When researchers from the University of Pittsburgh launched a pilot program to study gay men to look for the secrets of AIDS, he and many others offered to be guinea pigs. Pusateri also joined the community advisory board of what would soon be called the Pitt Men's Study, the local arm of a national research project that still provides important information about AIDS and HIV.

In 1985, scientists devised a test to detect HIV infection. Men's Study blood samples, drawn in 1982, were taken out of storage. Pusateri wasn't surprised to learn that he had the virus even then.

But "I really had no inkling that anything was wrong with me," he said. The test result "didn't devastate me. It put a whole new perspective on my life and how I would conduct it."

That meant practicing safe sex, not drinking alcohol to excess and taking better care of his general health.

Pusateri and his doctors suspect that he was infected by 1980, although he felt fine until six years after the HIV test. At the same time, it seemed that every month, another friend or acquaintance died.

In 1991, while volunteering at a Memorial Day picnic for the gay community, he suddenly felt tired and weak. Almost two weeks passed before he realized that his illness might be connected to AIDS. By then, he'd lost more than 10 pounds and his blood oxygen level had become dangerously low.

Tests at Shadyside Hospital confirmed that Pusateri had Pneumocystis carinii pneumonia, the same infection that took advantage of the fragile immune systems of the first group of AIDS patients and many others who followed.

Pusateri gets out some of the 34 pills he takes every day in his fight against AIDS. Five medicines treat AIDS directly, and he takes prescription iron, multivitamins and more drugs for other aspects of the disease. (John Beale, Post-Gazette)

During his three-week hospital stay, an intern told Pusateri that he should spend all his money and live life to the fullest, because he'd have only a few years left. He thought she was crazy.

"I had no intention of dying," Pusateri said. "I never, ever thought I was going to die, as sick as I was."

From that time on, he has been taking medications to combat HIV. Even though he is a pharmacist, he cannot remember every name on the long list of drugs he has used. He retired from his pharmacy work in 1992. He had problems with throat ulcers and thrush, an oral yeast infection, but stayed physically active.

In 1996, Pusateri came down with another serious infection, this time with a group of bacteria called MAC, or mycobacterium avium complex.

The symptoms frightened him. He would suffer strange blackouts, in which he appeared to be alert and communicative to everyone around him, but would later have no recollection of what had taken place. He spoke of long-dead relatives as if they were alive, and told friends that he'd had no food, although his neighbor prepared and fed him three meals a day.

Right after he had finished hospital treatment of the MAC infection, he was admitted again because of a large blood clot in his calf. Doctors told Pusateri's sister and neighbor friend that he wouldn't live much longer. They stood in the hospital parking lot and sobbed on each other's shoulders.

'Going away' party

And then they threw Pusateri a spectacular surprise birthday party with more than 100 guests.

"I did not know [the doctors] had told my sister and [friend] that I was going to die," Pusateri said. "Somehow or other, I just kept getting better. I confounded everybody, including my doctors."

Around the same time, a powerful class of anti-HIV drugs called protease inhibitors arrived on the scene. Taken in combination, they cut the amount of virus in the blood and allowed immune cells to recover their numbers so they could fend off infections such as pneumonias.

Because of those drugs and other treatment advances, it is no longer unusual to find people who have been infected with HIV for more than 10 years.

Pusateri began taking the life-prolonging medicines. He's tried different drugs in a variety of combinations, and is now on a regime that works. The virus hasn't been detectable in his blood for almost two years. He is feeling better and doing more.

For a long time he has had neuropathy of the feet, a side effect of the medications.

"It makes your feet feel very heavy, like you're wearing leaded shoes," he explained. And they're oddly sensitive to the tiniest particle he steps on. Occasionally, pain shoots through them.

Drugs to control that pain are among some 34 pills Pusateri takes every day. Five medicines treat AIDS directly, and he takes prescription iron, multivitamins and more drugs for other aspects of the disease.

He has lipodystrophy syndrome, in which body fat is redistributed in a distinctive way. It's not yet clear if it is caused by the medications, AIDS itself, aging, or an interaction of those factors.

Pusateri has developed the so-called protease paunch, which he calls his baby, and has elevated cholesterol levels, but doesn't have a fat deposit on the upper back, known as a buffalo hump, that some patients get.

Tummy jokes

"Some of us guys will get together and talk about our stomachs," he said. "There's nothing you can do but joke about it. If you don't, you'll cry."

In 1997, Pusateri's older sister, whom he called the crutch he depended on, had a stroke and died. He decided that it was time to help others, so he began volunteering at Shepherd Wellness Community, which offers services to HIV patients and their families. He is now in charge of the congregate meals and has started new programs for people infected or affected by HIV.

The practicing Catholic is trying to say "Thank you, God, for snatching me from the jaws of death and giving me some extra time."

Pusateri is also starting the Alpha to Omega Fund to distribute grants for HIV prevention and education programs for young people. They don't remember the period when a community was decimated and may be taking risks that could kill them, he said.

"When you were 17 or 18 years old, didn't you feel like you were going to live forever?" Pusateri said. "People have sort of lost the message. We're going to have to start from square one."

He added that he would eagerly take opportunities to tell young people about the realities of living with HIV and AIDS, but no one has asked him to speak yet.

Pusateri thinks his positive outlook, large support network and religious faith have aided his survival.

"When I first became ill with AIDS, I just planned for a year at a time. I always say, 'This will probably be the last time I do this and that,'" he noted. "That's the funny thing about getting better. You start making plans for maybe five years or 10 years."

He recalled complaining to his doctor a while back of knee and shoulder pain.

Those are pains of old age, she said after examining him. Isn't that wonderful?

Pusateri thought about it for a moment.

Yeah, I guess it is, he answered.

Contributions to the Alpha to Omega Fund can be sent to the Lambda Foundation, P.O. Box 5169, Pittsburgh 15206.

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