Friday, August 22, 2003

AIDS inspires a Fight for life


Cleves woman determined to help others with disease through charity she founded

By Peggy O'Farrell
The Cincinnati Enquirer

[IMAGE] AIDS patient Kelly Chambers founded FACE after her daughter died of the disease.
(Steven M. Herppich photos)
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It's a pretty, sunny June morning and there's a breeze in the air when the phone rings in Kelly Chambers' office, a tiny room in the basement of the former Holmes Hospital. The office furniture is strictly bare-bones, but the place is packed with photos and stuffed animals.

On the line is a nurse at the University of Cincinnati Infectious Disease Center, where Chambers is enrolled in a clinical drug trial. She has good news: For the first time since she was diagnosed with AIDS in 1994, Chambers' viral load count is down, thanks to the new medications she's taking.

The test, which measures how much HIV, the virus that causes AIDS, is present in Chambers' blood, shows her count is only 687. In a healthy person, the viral count would be undetectable. The higher the number, the sicker the patient. It was only a few weeks before that Chambers' count was over 500,000.

The Cleves woman repeats the count like it's a winning lottery number.

"It makes me know that I'm not going to die," she says, hugging her mother. Her voice trembles, then grows stronger.

But a month later, another blood test shows the count has climbed to 57,000. For some reason, the new drug combination isn't remaining effective. It could be worse, but it's bad enough. Her doctor puts her on another new medication, and come August, the count remains unchanged.

But at least it hasn't gotten higher.

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"The higher the count gets, the closer I am to dying," she says.

Chambers epitomizes how far the battle against AIDS has come: Twenty years ago, people who got AIDS were usually dead within a year of learning what was causing them to waste away.

Chambers, who is white, isn't the most typical AIDS patient - more than half of new infections are people of color. Thanks to new medications that suppress HIV, she has lived nine years with AIDS.

Some people who are HIV-positive never develop AIDS.

But the disease is still out there and people still die of it, though not nearly as often. Prevention efforts have contained the spread of the epidemic, but about 40,000 Americans are diagnosed with HIV every year, and more and more of those people are women and minorities. When the epidemic peaked in the United States in the late 1980s, more than 90,000 new cases were diagnosed yearly.

[IMAGE] Kelly Chambers visits the grave of her daughter, Crystal, at Spring Grove Cemetery.
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Chambers has entered the wasting stage of the disease and has lost more than 100 pounds in the last year. She is gaunt, her thin face shadowed with exhaustion and pain. AIDS causes neuropathy, or nerve degeneration, and she routinely has severe leg pains.

"I usually feel pretty damn bad, to tell you the truth," she says.

Not that Chambers, 35, ever expected to live this long with the virus. She learned she was HIV-positive in 1991 and developed AIDS in 1994.

But Chambers has a daughter to raise and a charity to run. The former waitress can't work anymore and is on disability. Some friends disappeared when they learned she was sick. Some of the friends she made because of the disease have died of it. Many days, she stays home to rest. When she's well enough, she goes into her office.

Chambers is fighting AIDS as hard as she knows how. Some days she thinks she's winning. Some days she's happy to call it a draw.

"I thought I would have been dead seven years ago," she says. "By all accounts, I should have been."

Medicines regulate her life

To keep the virus at bay, Chambers takes from 18 to 30 pills a day, depending on how her health is.

"I live my life around my medicines," she says. Some have to be taken before she eats. Some have to be taken with food.

She wakes up, takes one round of medication and rests for an hour. If she's not nauseous, she eats and takes a second round of medication. The third round comes right before bed.

[IMAGE] Chambers works with her mother, Dixie Sucher, in the offices of FACE.
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Because HIV knocks out the immune system, AIDS patients routinely suffer pneumonia. Chambers has had pneumonia in both lungs 16 times since she developed AIDS. She recently went through a nasty bout of thrush, a yeast infection of the mouth that's usually seen only in babies. Babies are prone to thrush because their immune systems are undeveloped. AIDS patients get it because their immune systems are barely functional.

AIDS makes her tired; she has little energy and less appetite. Some days, just vacuuming the carpet exhausts her. On days she feels like eating, her medications make it impossible to keep food down.

A lesion on her brain - she doesn't know if it's AIDS-related - interferes with her memory.

"I couldn't tell you what happened last week," Chambers says. "I remember bits and pieces of things."

That's where her family comes in. When Chambers is too tired to fight, they do it for her.

Dixie Sucher, Chambers' mother, keeps a written account of every medication Chambers has taken since her diagnosis.There have been so many that neither woman could remember them without the black notebook Sucher carries everywhere.

Whenever Chambers has to be hospitalized or start a new medication, Sucher drags out the notebook so the doctors will know what's worked and what hasn't.

Chambers uses a compartmentalized plastic case to keep her medication organized. She can't remember the name of every medication, but one look at the pill box lets her know at a glance what's left for the day.

'There is no cure'

When she can, Chambers talks to students at schools and colleges about HIV and AIDS and how not to get infected.

"The first thing people used to ask was, 'How did you get it?' " she says. "They wanted to know how much sympathy they should have." She believes she contracted the virus through unprotected sex.

She's shocked by how uneducated the kids she's talked to are about AIDS and how the disease is spread. "They don't think you can get it from oral sex," Chambers says and shakes her head.

She's more shocked by the attitude many people have that new viral-suppressing medications mean HIV is no big deal.

"That is so not true," Chambers says. "Just because there are medicines out there to treat HIV and AIDS, that doesn't mean there's a cure. There is no cure."

And Chambers worries that the students she talks to still think AIDS is something only gay white men get.

"You're not invincible. No one is. And AIDS is not prejudiced. It doesn't matter what color you are or what sex. I'm living proof. I'm walking, living proof that it can happen to you."

"When you're young, these kids say, they feel invincible," Sucher says. "Kelly really gets upset."

Charity helps

Chambers found out she was HIV-positive when she learned her infant daughter, Crystal, had been born with the virus.

"When they told me, I ran screaming through the ICU," she says. "All I could think was, I'll never see her graduate. I'll never see her grow up. My rights as a mother will be taken away.

"I didn't know anything about AIDS.

"I was scared to death. All I knew was my little girl's going to die because of my stupidity."

Crystal died in November 1991. She was 14 months old.

"I just wanted her to be a normal baby," Chambers says. "I just wanted her to be loved."

In 1992, Chambers founded FACE - For AIDS Children Everywhere - in Crystal's memory. The nonprofit charity provides financial assistance, food, clothing, household items, toys and treats for children and families affected by HIV and AIDS.

"When Crystal was alive, I was going to different agencies to try to find someone who would help me bury her," Chambers says. "No one would help me. There was no one out there specifically for women and families."

She never went back to her waitressing job because Crystal was always sick. Her husband, Clarence, is a farm laborer. He is not sick. Money was tight when Chambers could work, and it's tighter now.

The two met in St. Bernard "when she was about 15 years old. I saw that red hair and said, 'There's my wife.' I fell in love with her immediately," Clarence Chambers, 40, says.

Chambers lost her first daughter to AIDS; she gained her second daughter, LeAnna, through FACE. The 13-year-old also has AIDS, but her viral load now is so low it's immeasurable.

FACE's first clients were LeAnna's parents. As they were dying, they asked Kelly and Clarence Chambers to adopt their daughter, then 5.

Many more families need help - 76 on the most recent client list - but not many donations are coming in. FACE's coffers are nearly empty, and Chambers and her mother might have to shut it down.

"Without FACE, I have nothing more to live for, really," Chambers says. Her family and her faith keep her going, she says.

We've come a long way

Chambers learned a long time ago that AIDS doesn't stay secret for long.

"Ten years ago, I heard, 'Ew, she's got AIDS; walk on the other side of the street.' Mothers would come out and take their children off the sidewalk where I was walking so I wouldn't give it to them," she says.

When she learned Crystal was sick, her mother told her to tell people the baby had cancer. "Cancer was a socially acceptable disease," Chambers says. "I didn't want people to be afraid of her."

Sucher remembered the isolation that tuberculosis patients faced when she was a child. "Sometimes, I feel ashamed that I told her to do it, and then I think, 'Why should I?' " Sucher says. "Crystal had the right, in the time she had, to be treated like a child."

Chambers would like to think researchers will find a vaccine against AIDS or even a cure.

And she knows, better than anyone, how far medicine has come in fighting the disease. People can live a long time with AIDS.

But there's still a long way to go, she says. Some 40,000 new cases of HIV are diagnosed every year in the United States.

"From 20 years ago to the present, we've come a long way, but not far enough, because we still have people dying from AIDS."

But right now, Chambers isn't one of them. She's living with AIDS. She's fighting. For Crystal. For everyone who has it. For herself.

To learn more about For AIDS Children Everywhere, visit Web site or call (513) 584-3571.

E-mail pofarrell@enquirer.com.




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AIDS inspires a Fight for life
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