A physician ruminates on the new longevity of her AIDS patients.
My old patient Nancy phoned me last week. She just wanted to say hello, tell me the good news about her latest blood tests, see what I thought about a stomachache she’s been having.
If anyone had told me a dozen years ago that at the dawn of the new millennium I would still be getting phone calls from Nancy, I would have laughed. It would have seemed impossible for our relationship to last this long.
Nancy and I first met in a tiny Bronx clinic in 1988, in the very dark days of AIDS. The blood test for HIV had been available for about three years; the first antiretroviral drug, AZT, was just out. Most of the patients in our waiting room had been diagnosed with AIDS after a catastrophic infection of some sort and lived for only a year or two longer. Implicit in one’s first handshake with a new patient was the understanding that the doctor/patient relationship was going to be very intense—and very brief.
Nancy was one of the first identified cases of the heterosexual transmission of HIV in the Bronx. She could date her infection to 1984; by the time we met, she had survived for four full years and assumed that her time was running out. Other than the nightmare of her husband’s short illness and death, she didn’t know much about AIDS, but she did know that her husband’s doctor, my boss Jerry Friedland, was the only doctor she wanted at her bedside when she died. When she discovered that he had lightened his patient load and bequeathed her to me, she was beside herself. She wouldn’t look at me, wouldn’t sit in my chair, and slammed the door on her way out. I thought I would never see her again.
But she came back and we eventually became friends, or at least friendly enough for her to call about once a week with a new symptom that she was confident was the beginning of her final illness: spots in front of her eyes, a feeling that she was about to have a seizure, an episode of faintness on the subway. I would tell her not to worry; she usually didn’t believe me, and sometimes I didn’t believe myself. She had more than one unnecessary CT scan, I confess. Her T cells dropped below normal, she went on AZT, and she waited for the end.
One year passed, two years, three. The end came for almost everyone else, but not for Nancy. The other patients were transients in the waiting room; Nancy was permanent, solid as ever, wondering when the other shoe was going to drop.
“Come on, you can tell me, how long? Just give me a hint,” she would ask like clockwork once a month in the clinic. She thought I was holding out on her, and so I was. A lot of scholarly estimates of the median survival time for people with HIV infection were flying around in those days. Coincidentally, they were always about the same as the duration of Nancy’s infection. So I left it as, “I don’t know.” She still looked skeptical.
It is probably not at all surprising that of all my sick, complicated patients from that time, the one I really came to dread seeing on Wednesday afternoons was Nancy—healthy Nancy with the incessant barrage of questions that couldn’t be answered.
The Second Decade
Now, ten years later, caring for people with AIDS in this country has become a lot like taking care of many Nancys. It’s not as sad as it used to be, and people aren’t as thin as they used to be, but every year brings an even more intense barrage of complicated questions we don’t know how to answer.
The first era of AIDS drew to a close in 1996. Before then, while the other clinics down the hall were operating in the twentieth century, we in the ID (infectious disease) clinic (or the special care clinic, the virology clinic, or any of a dozen other euphemisms) were practicing the medicine of a millennium or two ago, right back to the era of Hippocrates. We had little in the way of treatments; we focused instead on diagnosis, prognosis, doing no harm, and plugging leaky dikes as best we could. Our clinics were drenched in classical tragedy, with overtones of La Bohème and Love Story. Everyone died in the end—except Nancy.
Everything is different now. More than a dozen drugs are on the market that, used in combination, can work miracles in reversing the complications of AIDS. Sometimes the drugs cause such severe side effects that they can’t be used, sometimes they don’t work, and sometimes they abruptly stop working. But even though the drugs are far from perfect, AIDS death rates continue to fall, and all of the old AIDS-related infections and malignancies we used to see so much of are becoming rare.
Some researchers predict that the current respite will be brief and the bad old days will return. Others think that the change may be permanent. They wonder if strains of virus that have been exposed to the new drugs may be less fit than they used to be and less able to cause disease. Either way, the epidemic is clearly different. Fewer people are dying of HIV infection, so more people are living with it. Clinics are getting crowded with patients who track their blood tests with the focus and ferocity of hard-core gamblers at the track.
Two of my patients are salesmen—one sells golf clothing at an elegant department store in midtown Manhattan; the other sells T-shirts, stuffed yellow ducks, and a little Xanax (a prescription tranquilizer that is very popular on the streets) out of a shopping bag on the Upper West Side. Both have been taking HIV medication since the early 1990s, adding new drugs one by one as the Food and Drug Administration (FDA) releases them. Now their viruses have been exposed to most of the medications we have and may be resistant to all of them. Both take time from work for their clinic appointments, look at their blood-test results, grimace, and head back to their customers. For three years their blood tests have predicted that they will be getting sick soon. But blood tests may not tell the whole story any more. So far, they both feel fine.
You never know how a person will choose to spend a shore leave of unclear duration. Some patients read nothing but the glossy magazines and drug company–sponsored newsletters, now targeted at people with HIV infection, and spend their days traveling from one support group to another. Others are going off disability, back to school, or back to work. A few are happily heading back to shooting up and heavy-duty partying. Every last one of them looks me straight in the eye and says all the right things about safer sex, but I’ve diagnosed two cases of gonorrhea and a case of syphilis in the past four months—a sign that some have thrown all caution to the winds.
Doctors and patients alike, we are all waiting to see what happens next.
Drugs, Striped Fingernails, And Hope
In early 1996 I met a twenty-four-year-old man just released from prison. He looked all too familiar—fragile and feverish, with a big liver, low blood counts, and the peculiar, wide- eyed stare that generally turns into AIDS dementia. This was Mario, a very nice kid with late-stage AIDS. I thought he had a lot of problems. As far as he was concerned, he had only two: He wet his bed occasionally, and his fingernails were turning dark.
I started Mario on a combination of antibiotics, and his swollen liver began to shrink. A neurologist prescribed something to relax his spastic legs, and his walking became a little easier. The social worker got him into a nice nursing home near the hospital.
Then it was time to address his AIDS medications. Permanent dark stripes on the fingernails are a well-known side effect of one of the drugs he was carrying around in his knapsack. It turned out that in an effort to get rid of the stripes, he had quietly stopped taking all of the drugs months before.
I gave him a combination of different drugs to try, and his next clinic visit was like the moment in the movies when the black and white turn to living color and the symphony orchestra begins to play.
Everything was slowly disappearing—the limp, the big belly, the little skinny arms and legs, the incontinence, and even the flaky skin in the middle of his forehead. He gained fifty pounds. He moved out of the nursing home to live with a roommate, then moved again into his own apartment. He decided that it was time to get a job. His discolored fingernails grew out.
In the middle of last year, his blood tests began to deteriorate again. The only combination of drugs left to give him had to include the fingernail-striper. For a few months he stalled. Finally he forced himself to make the switch—and he hasn’t looked back since.
Mario finished his job training and his parole. He took a job as a supervisor in the same AIDS day-treatment program where he was once a client. Now he’s a stressed-out member of middle management, a harried young executive with striped fingernails. He has his first checkbook and his first furniture. He is speaking to his parents again. He says he may dye his hair red (his mother is against it). His blood count and his liver tests are normal.
Every month Mario comes to see me, leans back in my office chair, and sighs. “Working with the public is so hard,” he says. “Especially when they’re sick.”
Last month he suddenly took off his Walkman headphones—a sign that something serious was on his mind. “I wanted to ask you… Do you think I’m ever going to get really, really sick? I mean, am I ever actually going to get AIDS?” There was dead silence as I considered and rejected each of a dozen answers. All I could come up with was, “I sure hope not.”
I’ve known pete for longer than Mario—almost five years now. Until the police cracked down on the vagrants in the Port Authority bus station in New York City, he spent most of his time there, socializing somewhere in the basement. He is more or less illiterate, a little retarded, and a little paranoid, but still extremely charming. He calls me “sweetheart,” “darling,” or “Mrs. Zuger.”
“Sweetheart,” he said the day we met, “I really believe that I do not have this virus. I really, really believe that when they had me tested they made a mistake.”
I retested him and showed him the results, but since he doesn’t read well, seeing something in black and white lacks its usual clout. “Sweetheart, I really believe, I really, really believe that I am not going to get sick from this virus.”
His blood tests showed otherwise. He began to lose weight and feel sick. In the summer of 1996 a committee met to get him started on the new AIDS drugs. We had the health educator, two social workers, two nurses, Pete, me, and the pillbox that beeps at medicine time. The most difficult part of the whole project was getting him to stay home from the Port Authority long enough to let the FedEx man with the drugstore package in the door.
After that it went like clockwork. On a protease inhibitor and a couple of other drugs, his blood counts soared. He said he felt good. Then he began to feel a little too good.
“Darling, I have something I have to tell you. I do not, I do not like being reminded every day about this virus. I really believe that when they did the test, they made a mistake. I would like to talk to the doctor that did the test.”
After six months he stopped taking his pills, and no committee has ever been able to put him back together again. I’ve sent him home a dozen times with new pills; I’ve called his long-suffering sister, his social worker, a health educator, a psychologist, a psychiatrist, visiting nurses, home health aides. Nothing has worked.
“Sweetheart,” he says, “I have to ask you this very serious: Can you make me a tape recording of you, Mrs. Zuger, saying that I have to take these pills, because I will tell you the truth, when I get home I will really believe that when they did the test they made a mistake.”
Now he’s crashing in slow motion. A few months ago he came in with a fever, a cough, and pneumonia on his chest x-ray. I put him in the hospital where a team of young optimists treated him for everything except the most common AIDS-associated pneumonia, PCP. I realized midway through the second of two frustrating discussions with their leader that PCP is becoming so rare that none of them had ever seen a case before. After the first week Pete decided, not unreasonably, that they were killing him in the hospital, and he eloped for home. His sister dragged him to another hospital where he finally got treated for PCP. He got better. He came back to the clinic a few months ago very thin and quiet, almost transparent in the waiting room crowd. It used to be that there were only a few solid ones out there, like Nancy, in a sea of ghosts. Now we have one or two ghosts in a sea of regular types. The ghosts are almost invisible, a few bad vibes amid all the good ones, easy to overlook.
Pete accepted some prescriptions, but he missed his next appointment. I called him.
“I threw them all out,” he said, “because I really believe, I really, really believe that these were the pills that made me so sick that I had to go into your hospital where they tried to kill me. Now I am doing fine.”
I keep meaning to call him again but keep forgetting. Once you get used to a new era, it’s hard to go back.
Nancy spans the old era and the new. She lives down South now but still likes to check in. Her T-cell count is still a little low, although it hasn’t changed all that much since 1990. Her feet have started to hurt from one of her medications, and she tells me she thinks she has “lipodystrophy,” a disfiguring repositioning of body fat that affects some people with HIV after many years on mediations. In the snapshots she sends she does look a little “off,” with a new double chin, heavy shoulders, and tiny little toothpick legs. Otherwise, though, she is healthy. Her son towers over her in the pictures—he used to be a cute little boy who loved to see her get her blood drawn and is now a huge, unrecognizable, unsmiling guy with a mustache, who is about to graduate from high school.
At one time all Nancy wanted was to live long enough to watch him graduate. Then she decided that she might just like to graduate herself. Now she takes college courses, cleans houses for a living, and has been talking about going to nursing school. She used to wonder if she would survive the training. Now she just wonders if she can afford it.
Nancy hates to talk about her illness, which she still thinks of as a terrible stigma. She put off telling her son for a long time. Her big news when she called last week was that years after deciding she wanted to tell her favourite housecleaning client about her HIV, she finally worked up the courage to do it.
“It couldn’t have gone better,” she said, flying. “The lady was really great.” I figured something truly inspirational had occurred.
And it did, although not exactly what one might expect. The client—a retired nurse—managed to come up with what may be the single best way to summarize HIV these days, a phrase that perhaps should replace that tired red ribbon as our mantra for this strange second decade of AIDS:
“Oh,” she replied. “OK. See you next week.”
- Is following your patients long-term important to you? How did that change how you felt during this piece?
- Are there are concerns with following a patient over a very long-term period?
- How can new technologies and treatments help redefine illnesses from a patient and media standpoint?