One Woman’s Fight Against AIDS--a ‘Threat to Mankind’

Peggy Kendall held a crumpled paper napkin in her left hand. She eyed a small wastebasket 4 inches from her bedside. She concentrated. She made a faint tossing gesture, and the napkin rolled off the tips of her dry, delicate fingers and fell to the ground.

Frustration flickered across her face, but only briefly. Peggy Kendall had other things to worry about.

Just a handful of years ago, Kendall wouldn’t have thought twice about disposing of wastepaper. Or of cooking, cleaning, changing diapers or doing any of the things that went with being a mother and housewife whose husband was in the Navy.

Today she is dying of AIDS.

Kendall, 39, figures it all began in 1973. Until then, things were normal, or at least as normal as they could be for a young couple rearing two small sons and living in Japan. But when a run-of-the-mill childhood accident that year alerted the couple that their 3-year-old suffered from hemophilia, they moved back to the United States and learned to adapt to a new life style.

Soon afterward, Kendall learned that she also had hemophilia, and she later gave birth to a daughter who is also afflicted with the blood disorder.

Bleeding for Two Hours

“Bob was running around like a typical 3-year-old when he fell and hit his head on the edge of a wooden chair,” Kendall said. “It was a pretty good whack, and we knew he needed stitches.”

She and her husband, Bill, took Bob to a hospital where the doctor expressed doubt that the wound had been bleeding for two hours, as the couple insisted it had. The Kendalls took their son home and were surprised the next morning to find blood on his pillow. Bob was still bleeding.

The family flew home to the San Francisco area and, after a round of tests in hospitals there, learned that their son was a hemophiliac. They also learned that the disease is a genetic disorder usually passed to a child through the mother. Kendall underwent testing and discovered that she, too, had a form of hemophilia, known as Von Willabrand’s.

After that, the family’s world began to change. Both parents learned how to tell whether the simplest of childhood mishaps, such as a twisted ankle or a bump on the elbow, had resulted in dangerous internal bleeding.

“A small cut is actually less of a problem to a hemophiliac than a sprained ankle, for instance,” Kendall explained. “When your child comes to you and says, ‘Mommy, I don’t feel good,’ you have to put your hands all over the body, especially at the joints, and feel for the swelling and warmth that could mean internal bleeding.”

‘Teachers Were Afraid’

“When Bob started school, the teachers were afraid of him. They thought he was going to break or something,” she said.

Kendall dealt with the ignorance and fear of her son’s classmates by giving them a demonstration using building blocks, showing the children that a hemophiliac is simply a person missing some of the building blocks of the blood. Bob attended a special summer camp for hemophiliacs and, as the years passed, learned to give himself transfusions of a clotting factor whenever the slightest injury occurred.

For Kendall, the problems related to hemophilia didn’t appear until after the birth of her second child. When her menstruations began stretching to 10 and 11 days and longer, her doctors put her on birth control pills to control the bleeding. In 1978, while taking the pill, she conceived and gave birth to a third child--a daughter who is also a hemophiliac.

Kendall said she was overjoyed at the arrival of her daughter, Gloria. But complications she experienced after the birth led doctors to recommend a hysterectomy, which was performed in February, 1979.

Hemorrhaging from the surgery continued for weeks afterward, and Kendall made many trips to the hospital for blood. It was during that time, she believes, that she received blood contaminated with the AIDS virus, which the medical community was only just beginning to discover.

By 1986, the Kendalls had moved to Spring Valley. A typical middle-class family with strong ties to their local church, they were normal in all respects except for the intermittent problems caused by the hemophilia.

They considered themselves part of the hemophilia community and read books on the disease, kept up with medical research and took part in special activities for hemophiliacs.

Thus, they were aware when medical research first began to make the connection between blood transfusions and the frightening new disease. Like many hemophiliacs, Kendall braced herself and, as soon as reliable testing became available, was examined for exposure to AIDS.

She learned that her life, complicated enough by one disorder, was to be transformed by an even more serious illness.

Immediately after Kendall learned that the AIDS antibodies were present in her blood, she visited her mother in Santa Rosa. Carolyn De Pauw recalled that it was during those two weeks that her daughter began experiencing the neurological problems that are almost always a result of the disease.

“She was having some strange seizures,” De Pauw said. “Mentally, she was off in space somewhere.”

Wants to Go Home

Today, Kendall spends her time in a local hospital in the near-constant company of her mother, who moved south to help keep the Kendall household running.

De Pauw said her daughter knows she is dying and wants to spend her final days at home, but doctors are hesitant to release her, fearing the risk of infection would be too great from the catheter she would have to use.

Still, Kendall looks forward to going home and to attending an upcoming party to be held in her honor at her church.

“A celebration of her life,” her mother calls it.

But going home would present its own worries.

Kendall’s 15-year-old son, Keith, apparently reacting to the stress on the family, ran away on May 20. Frantic that she might die without seeing him again, Kendall turned to a local television station for help. The next night Keith visited the hospital while Kendall slept, and left a note promising to contact her.

‘It’s Out of My Hands’

Bob, 17, tries to be philosophical.

“I try not to worry about things because it’s out of my hands,” he said. “Mostly I try and have lots of fun, because there’s not much more else in life to do.”

Bob, who has just finished his junior year of high school, said that he has missed some school while visiting his mother in the hospital, and his grades have dropped.

He believes that his younger brother may have run away because of conflicts with their grandmother, who has taken on the care and feeding of the children.

“She’s sort of angry, so she sort of takes out her anger on the family, bits and pieces, here and there,” he said. “It’s nothing really direct.”

He said that the family meets with a psychologist once a week and that such difficulties are just now beginning to be discussed.

“We just live moment by moment,” Bob said. “Days are too long a time period to think about what’s next.”

‘Like There’s Nothing Wrong’

Bill Kendall, a chief photographer’s mate with 21 years in the Navy, was refused permanent shore duty when he learned of his wife’s illness, according to De Pauw. He retired from the Navy in 1986 and now works in the National University audio-visual department.

“It seems like sometimes he shows some compassion, but again, at other times, it’s like there’s nothing wrong really,” Kendall said of her husband.

“During times when I’m home from the hospital, he says, ‘OK, now you can get back to doing 17 loads of laundry and cleaning house,’ just like everything was normal,” she said with a small laugh.

In fact, Kendall can hardly move. She cannot walk unassisted, and her handwriting, she said, has deteriorated to “a kindergartner’s scribble.”

As Kendall spoke, a nurse arrived with a small plastic cup of green liquid. Slowly, and with immense concentration, Kendall placed a straw in the cup and sipped her daily dose of morphine-laced medication.

Experimental Drug Tried

Her treatment used to include the experimental AIDS drug azidothymidine (AZT), but she stopped taking it because the side effects made her feel worse. Now she takes morphine for the pain and antibiotics to combat a recent staph infection, which followed on the heels of a type of pneumonia, pneumocystis carinii , that is common among AIDS patients.

With the assistance of her mother and two hospice volunteers who stopped by for a visit, Kendall slowly reclined from her sitting position. Her voice, surprisingly strong and determined when talking about her family, dwindled to a near-whisper.

“I’ve been through a lot of pain,” she said. “My legs hurt; I can’t stand up by myself. It’s a very painful existence.”

Kendall said she prays that people will reach out to help others, and begin reading about the disease and how quickly it can permeate a group of people.

She said her husband has tested negatively for the presence of the antibodies, but added matter-of-factly: “That doesn’t mean he won’t get it. He may be one of those silent carriers.”

Friends and her faith have helped her through the illness, she said. One friend, a young woman named Debbie who shared a hospital room with her, died of cancer last Christmas.

Within weeks of their meeting, the two became fast friends, giving round-the-clock support to each other.

“There were times when one of us was really in pain and we’d call to the other one, and just reach out and hold hands in the dark,” Kendall said. “We had different problems, but yet we were just so close.”