Plague Years

by Ross A. Slotten, MD

  After I confirmed that he had thrush, our gazes locked and the terror in his eyes pierced me to the core. It was like standing on the shore as a man thrashed in the water and having no means to save him. This feeling of helplessness and impotence would cleave to me until the end of Stan’s life. To throw up my hands in despair and admit that I felt helpless would have been useless to him. No one wants to hear that, no matter how true it is. I had to appear strong and steadfast while preparing myself psychologically for the worst.

  Frantic, Stan agreed to allow me to draw blood to check the status of his immune system, but he continued to refuse an HIV test. I didn’t argue with him because it didn’t matter: A yeast infection in an otherwise healthy person could mean almost nothing other than that he was HIV positive, and he knew it. When the results came back a few days later, they confirmed that he had severe immune deficiency. When I gave him the news over the telephone, he didn’t jump out a window. Much to my relief, he agreed to AZT.

  Still, Stan focused on AZT’s side effects instead of its benefits. An eternal pessimist, he was also a former doctor who’d seen horrible allergic reactions to, and even death from, medical treatments. The botched surgery, the missed or incorrect diagnosis, and dangerous drugs—when you’ve witnessed the worst, it’s difficult to acknowledge how much good modern medicine has accomplished. No wonder doctors and nurses make terrible patients! I tried to convince Stan that the benefits outweighed the risks. In my opinion, AZT was better than doing nothing and watching him die. Even if its effects lasted only a few months, I said, AZT offered a tiny ray of hope. I spared him the logical end of that sentence—“in a hopeless situation.”

  Only days after starting Retrovir, the brand name of AZT, two tablets every four hours around the clock on a rigid schedule, Stan complained of headaches, fatigue, and nausea, among other physical complaints, and searched for any excuse to avoid taking the recommended dose. I pleaded with him to do everything in his power not to change the dosing. Never a radical in medicine, I’ve always followed the rules (or guidelines, to use more professional language) until or unless solid data dictate otherwise. Occasionally during the height of the AIDS crisis I lost a patient to another doctor because I was too “conservative,” the patient would say, as if I were still leeching, when in fact experimental or nonconventional treatments scared me because they could be lethal.

  At dinner one evening, Stan coughed incessantly, as if he had a bad cold or bronchitis. A few days later, when he called to tell me that he became short of breath climbing stairs in his store, I offered to drive him to the emergency department at St. Joe’s. I now owned a car, which was less a reflection of my increasing income than an acknowledgment that walking to and from my apartment, the hospital, the office, and patients’ homes with black bag and stethoscope in hand was inconvenient, time-consuming, and even absurd. The purchase was a major concession to a more complex life that Gavin embraced with a sigh of relief. A Mercedes Benz, the car Stan drove, was beyond our reach; I’d settled for a Toyota Corolla.

  As we trudged from the garage to the ED, Stan stopped frequently because of fits of coughing and a feeling that he might pass out. Looping my right arm around his left to ease the strain and provide support, I inched with him toward the intake desk. By this time the emergency room nurses weren’t surprised to see me with an AIDS patient—and he’d hardly be the last that I’d accompany there. We maneuvered him into a wheelchair and pushed him into a private room, where he changed into a gown, hoisted himself onto the uncomfortable gurney, and lay down, huffing and puffing from the effort. I asked the nurse to start an IV and hook him up to oxygen, and ordered some bloodwork and a chest x-ray.

  Because he was in no mood for talking, I left Stan for a while and chatted with the nurses and lone physician. It wasn’t a busy night. The secretary occupied himself with paperwork. A patient moaned behind one of the closed curtains; from behind another I heard the bleeping of a heart monitor. A technician rolled a cumbersome x-ray machine into Stan’s room and then left a few moments later. I wrote a note in the ED chart about Stan’s condition.

  Fifteen minutes later the tech notified me that the film was developed. I crossed the hall to the viewing room and positioned the flexible celluloid rectangle the size of a placemat onto the viewing screen. It showed what I feared: fluffy white patches scattered throughout the black background of his lungs, a pattern most consistent with PCP. When I showed Stan the chest x-ray at his request, holding the image up to the fluorescent ceiling light and pointing out the infiltrates, I told him that he needed to be admitted.

  “What choice do I have?” he asked.

  I promised to do my best to make him better.

  Stan wanted me to get his robe, toothbrush, and slippers from his apartment. While a private room was being arranged for him, I drove back through Lincoln Park to his high-rise a mile south, wondering how this would turn out. If he had PCP, he was likely to improve after intensive treatment. By 1987 we’d gotten better at preventing early death from this disease. But PCP was tricky because it sometimes killed despite everything we did. I hoped that he might have a bacterial pneumonia, which would be easier to treat. In either case, no matter what he had, he was entering a death spiral.

  I was concerned that Rob would hear me fumbling with the keys, open his door, and ask me questions Stan wouldn’t have wanted me to answer. Fortunately, he wasn’t home. Walking through Stan’s apartment in his absence, I felt as if I were a trespasser in a museum after hours, my footsteps echoing off the freshly waxed parquet floors. Stan had created an elegant living space, with antique furniture intermixed with more contemporary pieces. His walls were full of original high-quality artworks. Before entering his bedroom, I noted the Picasso lithograph on the wall next to the door.

  Stan had painted the bedroom walls evergreen, which made it dark and cozy. In a corner he displayed a magnificent cactus on a pedestal, its stems budding like prickly mycelia in every direction. On the dresser next to his bed was a photograph of his parents on their wedding day. Near the closets hung a painting of a Black Madonna, the only religious symbol in his apartment, chosen for its beauty and artistry rather than for its religious significance. Long ago he’d given up Catholicism. He professed no allegiance to any religion, and his illness didn’t drive him back to God. He had nowhere to turn for spiritual solace. And on that level I could be of no help.

  Opening the closet doors in the bedroom of Stan’s condo, I was shocked by the disarray. Stan had piled one thing on top of another. The slovenliness seemed uncharacteristic because he was fastidious in every other way. A cockroach scurried out of sight. I didn’t have the heart to tell him later. Grabbing a robe, I shut the doors before something else might jump out, and returned to the hospital. But he told me I’d brought the wrong robe. The one he wanted hung on the back of the door in the bathroom.

  The next few days were difficult. The samples from the bronchoscopy—performed by Dr. R. with sedating doses of Valium and Demerol, which were barely adequate to reduce the anxiety and discomfort of a tube jammed down the throat into the bronchial trees of the lungs—confirmed PCP. Dr. R. was a hero to me. Since the beginning of the epidemic, he had never expressed any fear about his personal risk of HIV infection, which was real—he was exposed to infectious body fluids during every procedure—or “moral” objection to the patients he treated. He had an extraordinary work ethic and seemed never to sleep. He might appear at a patient’s bedside at 10:00 p.m. on a Friday, or whisk a patient off to a bronchoscopy at 3:00 a.m., after an arduous day that had begun early the previous morning. Without him it would have been impossible for me to make an accurate diagnosis of and treat lung infections related to HIV. I am forever grateful to him. Treating people with HIV requires collaborating with other healthcare providers, and I relied on Dr. R. more than on almost any other consultant at the time because pulmonary complications from HIV infection were very common.

  Stan complained about his severe sore throat afte
r the procedure and whispered, wincing at every word as if swallowing shards of glass. We’d already agreed that the family practice or internal medicine residents wouldn’t follow his case, which meant that I was called for every problem, day and night. I loved him dearly and would have done anything for him, but he was one of several hospitalized patients I had. I had a packed schedule at the office, telephone messages to answer, and paperwork as well. There was only so much time I could devote to him without feeling exhausted and overwhelmed.

  The hospital care angered him. He chased nurses out of the room and writhed when poked with a needle for a blood draw or insertion of an intravenous line. A nurse who took his pulse with her fingers pressed on a gauze pad to guard against transmission of HIV—a ridiculous gesture because checking the pulse posed no risk—humiliated him and infuriated me. To his chagrin, a customer of his store recognized him when he was walking the halls, although most of the time he stayed in his room as if it were a bunker. The medication prescribed to treat his pneumonia upset his stomach, but he couldn’t tolerate antinausea medications. In short, it was a miserable experience for everyone involved.

  Once discharged to his apartment, Stan said that he felt worse and begged to stop his medications. I told him that he needed to be treated for a total of three weeks, as long as the side effects weren’t worse than the PCP itself. Unable to sleep, he called me multiple times a day to rage about the world. After completing his therapy, he felt better and his chest x-ray had cleared up. This news lifted his spirits a little. But his fevers soon returned, as did a staccato cough.

  One night Gavin and I visited him when he wasn’t feeling well again. As we sat in the kitchen table making small talk, Stan suddenly pressed his palms to his temples, stood up, stamped his feet like a toddler throwing a temper tantrum, cried out, and ran to his bedroom. It was shocking to behold, a display of raw, uncensored emotion that I’d never seen in Stan before. It was useless trying to console him. He refused to talk, and we didn’t dare enter his room against his wishes. We heard muffled sobs through a wooden barrier that was just one inch thick but separated us by a chasm. His anguish was heartbreaking, the more so because it was beyond consolation. Embarrassed, he ordered us to leave. We had no idea what else to do, so we did. But I couldn’t shake the sight and sound of that unexpected outburst. I knew it would be seared into my brain for as long as I had a memory.

  As we exited, all sorts of images of how I’d behave in a similar situation flashed before me. I was afraid to die too. Art had frequently confessed to me that he thought the worst way to die was to be stabbed with a sharp knife. That was long before he knew that he had AIDS, a death worse than a stabbing, in my opinion. People sometimes say that they’re not afraid of death itself but dying, with its attendant suffering. They hope to pass away in their sleep, presumably without any conscious knowledge that they’re about to die. But I’m afraid of both—the suffering and the finality. (One of my college professors, an old-fashioned field biologist, said that he wouldn’t mind dying if he could poke his head up from the ground every ten years to see what was happening in the world. I liked that idea, to glimpse how the world changed in ten years, a hundred years, and even a thousand years.) Witnessing other people’s deaths in the prime of their lives made me no less fearful. To maintain a facade of courage or equanimity in the face of one’s own imminent demise, as in the movies, requires a degree of inner strength, or superior acting skills, that I lack.

  The next day, calmer, Stan agreed to hospitalization to evaluate the fevers and cough, but he refused another bronchoscopy and wanted to be treated as if we knew the diagnosis. Unfortunately, his white blood cell count had dropped to a dangerously low level, putting him at risk for life-threatening infections that had nothing to do with AIDS. With such a low count, he couldn’t go home and had to remain in isolation in a hospital room. Although we didn’t have to wear masks, we gowned and gloved if we needed to touch him—to protect him from us, not the other way around—and disposed of these items in a special container when we left the room. He was also forbidden from eating fresh fruit, which couldn’t be sterilized. Eventually he accepted the bronchoscopy, which proved negative for PCP and other causes of pneumonia. After further testing, we concluded that he had had a reaction to the treatment of his PCP, which was reassuring because he’d recover.

  The next two months were more peaceful. Stan regained his strength and sense of well-being. He became more hopeful and tried to be optimistic, even cheerful. Remarkably generous, he sent us huge, magnificent plants as housewarming gifts (we’d just moved from the apartment on Burton Place to a townhouse we purchased west of Boys’ Town). Each plant must have cost a lot, even with his industry discount. When we visited his store one day, he insisted that we take numerous handwoven decorative baskets. His generosity bordered on mania. We sat in his cramped office—its walls lined with shelves full of vases, his desk piled with bills and papers, a print of Van Gogh’s irises adorning the wall above, a pastel drawing of his shop by an aspiring artist that rested on a wooden bench behind his swivel chair—laughing, joking, and discussing politics. His laughter was truly joyous. He’d throw back his head, mouth wide open, showing his white teeth, his eyes observing you for a reaction. It wasn’t a belly laugh—Stan could never relinquish total control—but a good-natured, warmhearted laugh.

  This period didn’t last long. Soon he noted gradual loss of vision in his right eye. I referred him to my ophthalmologist friend Dave, who discovered that CMV was the cause of his encroaching blindness. Stan complained of the unfairness of it all, comparing himself to Christian, who seemed to have no problems with his HIV infection after recovering from PCP. Tom and I had managed to procure Christian several months of AZT, which we shipped to Paris because AZT was not yet approved in France. But Christian’s invincibility was an illusion, because he was destined to die like everyone else with full-blown AIDS. Stan showed me an article from a French newspaper about an experimental HIV treatment; after this he hung all of his hopes on this therapy and made dozens of calls to Christian, with whom he pleaded to get him into that program. But the diagnosis of CMV disqualified him.

  A new medication had recently been approved to treat CMV, but it interacted with AZT. Administered through a vein, it would have to be given multiple times daily indefinitely, and Stan could no longer take AZT. Stan’s only other option was to be referred to a specialist at a university who was engaged in a study that involved giving the medication in the eye. Because only a small amount of the medication would be absorbed into the bloodstream, he could stay on AZT. Stan didn’t want to go blind, didn’t want to die, and didn’t want to stop AZT. But it really wasn’t much of a choice. He might not lose his eyesight, but he would die no matter which procedure he agreed to.

  The local injection involved shoving a needle through the eyeball to deliver the medication directly to the retina. It was a brutal procedure, despite the application of a topical anesthetic to the eye. Dr. P., the ophthalmologist, was a Nazi as far as Stan was concerned, callous and unsympathetic to his plight. Sitting for hours in the waiting room that he shared with a variety of patients, mainly elderly men and women with cataracts and glaucoma, he waited in dread until summoned. A medical assistant brought him back to an examination room, where he was placed on a table. Gowned and gloved, the doctor entered, described what he planned to do in a perfunctory manner, anesthetized the eye, injected the drug, and moved on to the next patient. The doctor’s barbarity, as he described it, obsessed Stan.

  Unfortunately Stan suffered a common complication of CMV, a retinal detachment. Dr. P. admitted him to the hospital for reattachment. To ensure success, Stan had to be put at complete bed rest, lying on his stomach for a day with a cumbersome patch over his eye. Terrible as that was for him, the crowning blow came when Dr. P. told him that CMV was now also in his left eye. The message was delivered without passion or compassion, Stan said. After giving the news, the doctor walked out of the room.

 
; Stan was furious, feeling completely destroyed by the news. There was absolutely nothing I could do. I had no professional relationship with Dr. P.; I’d never met or spoken to him; and I was in no position to influence his behavior by threatening to refer patients elsewhere, because he offered a service that no one else in Chicago did at the time. Without treatment Stan would have gone blind. I appealed to Dave, but Dave was also HIV positive and couldn’t afford to alienate Dr. P. Stan finally agreed to stop AZT and receive his CMV treatment intravenously.

  It surprised me that Dr. P. had shown no sign of respect for a fellow physician. A little kindness, a friendly chat about Stan’s education and training, why he’d given up medicine, and so forth, would have gone a long way in easing Stan’s anxiety. I concluded that Dr. P. was at best insensitive, like a good number of other doctors I knew, interested only in accruing subjects for a clinical trial to enhance his reputation, puff his curriculum vitae for future governmental or pharmaceutical grants, or supplement his income, but indifferent to the patients in the study. Perhaps AIDS and gay men disgusted him; or if we grant him a bit more humanity, he erected a harsh facade because he had no idea how to behave around a mortally ill patient.

  In the end it didn’t matter. Stan’s health rapidly deteriorated, and as he declined he became unexpectedly docile. The personality change was evident when he reported to me blandly that he thought he was having seizures. Several times he’d awakened on the floor or in bed in a pool of urine, his tongue roughly bitten, he said. Alarmed, Gavin and I rushed to his apartment and found him soiled and disheveled. After cleaning and dressing him, we drove him to the hospital. A scan of his brain showed a pattern consistent with PML, an untreatable viral infection. Soon he became confused and could no longer control his bowels and bladder. Then he lapsed into a coma, surrounded by the family he avoided and a few friends who loved him.