A cascade of catastrophes ensued: renal failure from the amphotericin B with which I was treating the Cryptococcus, a blood clot to his lung from his leg veins as a result of his prolonged bed rest, a severe rash from the Bactrim that I had placed him on presumptively when he developed pneumonia, an infection from the intravenous catheter that had to pass through the inflamed skin. . . . There was no way he could survive. And yet another event would have to occur to actually kill him. The body blows had taken their toll; a clean punch to the chin had not as yet landed.
That morning, there was “nothing” to do for Scotty, but it took me almost an hour to achieve it. It was a peculiarly distasteful task for me: much of ICU care has this futile quality, this illusion of purposefulness generated by the trappings of technology and invasive procedures. A novice in medicine sees only the drama of the pacemaker and the Swan-Ganz catheter; more years in medicine and you see how suffering is prolonged, hospital bills multiplied tenfold, the possibility of a dignified death diminished.
I examined Scotty carefully. I spread out the ICU flow sheets—modified ledger sheets—for the last twenty-four hours and looked at Scotty’s fever curve, his temperature, his blood pressure, his fluid intake, his output, the lab tests that had come back, the medication that had been administered, the readings on his ventilator dials. His kidneys had shut down. I had to calculate the fluid and electrolytes he was losing through diarrhea fluid and “insensible” losses such as sweat, and then write orders for intravenous fluids to replace what he had lost and exactly what he needed for the day. Any more, and he would balloon up; too little, and his blood pressure would drop.
I made fine adjustments on the ventilator, trying every day to decrease the percentage of oxygen in the inspired air, or to decrease the number of breaths the machine gave him every minute in the hope of weaning him off the ventilator and getting him out of the ICU. If we succeeded in weaning him, I would definitely not put him on a ventilator again.
I wrote a note as well as a page full of orders for the day. The eleven-to-seven shift was signing out, “giving report” to the seven-to-three shift.
Most days I stayed clear of the ICU nurses. It was one reason why I chose this time of day to make rounds—the nurses were occupied in the change of shift. I recognized that Scotty’s condition was pretty hopeless and he was now merely a nursing burden; I felt guilty each day that Scotty survived. Scotty was not the sort of AIDS patient that I wanted to bring to the ICU; as a test case, it sent the wrong message, it played right into the hands of nurses who thought treating any HIV patient was futile, and could point to Scotty as an example of that futility. But it was difficult legally and ethically to simply unhook the respirator and let him die.
The nurses who took care of him, for the most part did not voice their discomfort to me. But the way they gloved, gowned, goggled and wore booties when entering his room, as if they were going to the moon, reflected their disquiet. One time I overheard them giving report: the nurse who would have been assigned to Scotty had just called in sick; the general grumbling suggested that she had done so in order to avoid this assignment. There was a fairly heated debate as to who should get him now. Could I really blame them? All I had to do was examine him and write orders. I didn’t have to deal with the diarrhea, the skin breakdown, the incipient bedsores.
But this morning the nurse taking care of him did question me:
“Why are we going on?”
I was taken by surprise. This nurse had previously been quite friendly to me; I had always thought her competent and caring. Now all I could see were cold green eyes behind the goggles, mask, cap and double gloves. I was standing in the room minus any special garb—none was needed. And I was being questioned by an apparition. Her tone seemed to discount any past relationship we had.
“We really aren’t going on,” I said. “But you know as well as I do that we can’t just turn everything off now.”
“I don’t think we should have bothered in the first place.” Her voice was cold and the anger quite naked. “He deserved what he got. It’s no one’s fault but his. And I don’t see why we should have to take care of him.”
There it was. Naked, ignorant and shameful prejudice that I had anticipated, had feared, but had thus far been spared, at least directly. After she said this, she turned her back on me.
I took a deep breath and tried not to let this rattle me. I reminded myself that I was only indirectly responsible for Scotty’s illness, his failure to respond to therapy, his present irreversible state.
But I was rattled. I had become the target of her venom—the discussion had not really been about Scotty. It had been about me.
BY 7 A.M., when I stepped out to the Miracle Center parking lot, the fog was burning off and there were many more cars in the lot. The Miracle Center was built on the edge of a plateau which the Mountain Home VA shared with it. Now, in the distance, I could see the long uninterrupted chain of mountains to the south, beyond which was Asheville, North Carolina. Fog filled the valley in between.
I drove back to the VA, to my lab, a distance of a quarter of a mile. Betty Franzus, my research technician, was waiting for me with five cages of hamsters. The hamsters were peevish and irritable from riding the rattly elevator so early and being brought down from the dark animal facility to the fluorescent daylight of the lab. They surged from one end of the cage to the other, climbing over each other, poking their whiskers through the bar, sniffing nonstop as if to divine our intentions. I was continuing my research into pneumonia, the research that I had begun in Boston. I had modest funding from the VA Research Service, and I now had a few published papers describing this model. The hamster lung proved a good model for the human situation, and there were simple questions about pneumonia that could be answered.
With my left hand I grabbed a hamster by the loose fur behind the neck and shoulders, and bunched the fur up in my hand so the paws and legs splayed out. The hamster was now immobilized. With my right hand, I slipped the needle of a tuberculin syringe into the peritoneal cavity, injected 0.4 ml of pentobarbital and dropped the hamster back into the cage, drawing my hand away quickly to avoid getting bitten: they whirled around snapping before their feet even hit the ground. In assembly-line fashion, I injected twenty-four hamsters with pentobarbital. When I had injected the twenty-fourth hamster, the first was already snoring.
One after the other, Betty would hand me a warm, furry, snoring body from the cage she had solemnly labeled, “Preop holding.” I positioned the limp hamster on my dollhouse surgical platform, propped its jaw open with a special setup of rubber bands and retainers, adjusted my headlamp, grabbed the tongue between my thumb and index finger using a piece of gauze for traction, gently pulled the tongue forward till the liplike rim of the epiglottis came into view. Delicately, I slid a curved tube into the trachea and shot down a measured dose of staphylococci.
The hamster responded with a gasp. Soon it sputtered, gave a cough, and then resumed breathing again. If after thirty seconds it did not breathe—a hamster Code Blue—I would cannulate the trachea one more time and using a small syringe—a Barbie-doll ventilator—push air in and out of the lungs till spontaneous respirations resumed.
Once I was satisfied that the dose had been delivered and the hamster was breathing, I handed it back to Betty who propped it up, its back leaning against the wall of the cage, its paws in front of its face. The cage was labeled “Recovery Room—Immediate Family Only.” Betty now handed me another hamster. This clearance experiment would keep Betty busy for a week: my part was just the intubation, which Betty as yet found tricky.
I rushed from the lab to the hospital building at the other end of Dogwood Avenue. Cars were pouring into the VA now, just as the fog was lifting over Mountain Home. Two yellow school buses waited to take the domiciliary veterans on an excursion to Laurel Falls. A mini traffic jam on Dogwood Avenue finally eased and I saw the cause for it: two ducks from the duck pond had taken their own sweet time crossing the
road.
I was just in time for VA morning report held in a paneled conference room dominated by a large oak table and rimmed by chairs upholstered in rich mahogany leather. The new cases admitted to all three medical wards from the previous night were presented to me by the chief resident in brief thumbnail sketches. In attendance were the three medical teams, each consisting of a senior resident, two interns, a fourth-year medical student, and two third-year medical students.
I picked one of the cases and asked to have it presented in detail, stopping along the way to quiz the students and residents on various aspects of the history and physical. We studied the x-rays and constructed a differential diagnosis on the blackboard, then formulated a diagnostic and therapeutic plan. To discuss a case extempore like this was fun and challenging: what my audience did not realize was that I was free to take the discussion into areas that suited me. Over the years I had perfected certain elaborate proofs, rehearsed anecdotes illustrating cherished doctrines, polished bawdy stories that illustrated Occam’s razor, Sutton’s law and Buridan’s ass, resurrected eponyms that kept alive the memory of Traube, Courvoisier, De Musset and Skoda. Of course, I repeated myself—one had to. Fortunately, residents rotated every few months and graduated every few years.
From morning report I went on to Ward 8 where I was the attending physician that month. That morning, as my team walked in and milled around the nurses’ station and readied the chart rack, there was a strong odor of feces. No one mentioned it and we were in a learned discussion about the low serum sodium on Mr. McGregor, the patient in bed one, pointedly ignoring the odor, when Maggie, a buxom nurse who had worked in the VA for years, long before the medical school had arrived, looked around, sniffed twice and said in a loud voice, “Do y’all smell poop?” We looked at her and nodded reluctantly. “I sure do!” she said and marched off to establish the source.
Poop or no poop, it was a pleasant contrast from the Miracle Center to push the chart rack down the aisle between the beds, our entourage of residents, students and ward nurse moving together as a pack, being able in one sweep to see all our patients, wish them good morning. We began at the solitary private room at the near end of the ward, nicknamed the “Rose Room.” This was where patients who were dying were moved. It was inconvenient to keep them on the general ward with the curtain always drawn around their bed. In the Rose Room, a veteran with metastatic oat-cell cancer of the lung was drawing his last few breaths. We examined him and made adjustments to his morphine dose. Somewhat subdued now, our team moved out to the open ward.
In the past two months the VA, which till then had been spared any experience with AIDS, had seen two veterans with AIDS. The first patient, Arthur Simpson, a male in his late fifties, had lived in Boston for years before he came home to Tennessee. He vigorously denied any risk factors for HIV infection—he said he was not gay, had never used intravenous drugs. He admitted only to occasional contact with prostitutes while in the service. He had come in for Pneumocystis carinii pneumonia. An astute medical student spotted a strange skin lesion in his armpit which, when biopsied, turned out to be a Kaposi’s sarcoma lesion. In all my years in AIDS (ten at the time of this writing), I have never seen Kaposi’s except in gay men. Arthur Simpson had been lost to follow-up and eventually we learned he had died at another VA facility.
The second veteran, Seth Barker, was a sullen, young black male from Knoxville. He had been on active duty and was medically retired as soon as he became ill. When he too blamed “prostitutes” as his risk factor, saying the word without any conviction, as though it were a boring but necessary password, I sensed that this was what we were destined to hear in the VA.
But this morning, on the VA wards, it was not AIDS but the usual VA fare: one of the Roach brothers in for the umpteenth time with possible angina; a Mr. Trivett with chronic lung disease who had his condition exacerbated when he tried to spray-paint a car without benefit of a mask; “John Doe,” a neglected and debilitated old man with a stroke, diabetes and pneumonia who had been left at the emergency room entrance while the family went to “park the car” and were never seen again.
After rounds, I met with Doyle, a third-year medical student for whom I was adviser. Doyle was cocky, ambitious and impressionable; he was definitely leaning toward surgery as a career choice. We talked about where he would apply for residency. I encouraged him to take a few senior-year electives away from Tennessee, preferably in a giant institution in a big city. That way he could get a flavor for city medicine; it would help him decide what he ultimately wanted to do. He was keen to do an elective in Houston—a former girlfriend of his lived there and he was hopeful that he could resuscitate the relationship.
I met with Karen and Bud—the infection control nurses at the VA—and went over the latest data on hospital-acquired infection at the VA. I also drew up the agenda for the infection control committee meeting for the next week. I checked the mail and signed the paperwork that was in my VA office.
At lunchtime I snuck over to the Miracle Center again, this time to see a new consultation that my answering service had called in to me. Cindy Johnson was an unfortunate girl with cystic fibrosis who was now sixteen years of age—a long time to survive with cystic fibrosis. She had come in for a flare-up of her condition and had pneumonia. She was unlikely to survive this hospitalization, primarily because she had vetoed a ventilator—we were to do everything else. Cindy recognized that if she got onto a ventilator, she might wind up living on it; she didn’t want that. I made recommendations for antibiotics and even tried something experimental: aerosolizing gentamicin through a mask to try to get high antibiotic levels into the collections of pus in her bronchi. I was deeply affected by the sight of this brave and dignified teen. She sat upright in bed, elbows resting on her bed tray, unable to lie back. Her raven hair contrasted with her blue lips, clubbed fingers and blue nail beds. Her parents and siblings had gathered around her. She was fighting for every breath, and it was inevitable that she would tire soon. Still, she was possessed of a certain calm, she was resigned to the end of her life, tired of the unending struggle it had been.
I was fifteen minutes late for the afternoon clinic at the University Physicians Group office. In between patients, I scanned lab reports from the previous week’s clinic and signed the mound of forms that seemed to spill out of my box every week: applications for Social Security supplement, applications for disability, applications for handicapped parking, work releases . . .
I checked with Betty in the lab at the end of the day to see how our hamsters were doing: all had survived thus far. My beeper had gone off regularly through the day: a nurse calling to clarify an order on Scotty Daws; a patient’s wife wanting to talk to me; a long-distance phone call from Boston that I had been anticipating; a surgical resident who had stuck himself with a needle. . . . The last page of the day was from my friend. Earl who wanted to know if I could play tennis. I begged off—I wanted to go home.
When I finally headed home at about six thirty, I felt as if I had spent the day darting around the various campuses, circling the parking lots looking for a legal place to stick the nose of my old Datsun 280Z, scurrying in, scurrying out. As the day went on, I felt the Z’s lack of an air conditioner. I had bought the car five years before from a medical student whose daddy had bought her a Porsche for graduation; the Z had been her high-school graduation present, it was almost ten years old. The air conditioner had never worked ever since I bought the car. But I was fond of it, unwilling to part company with it.
During the course of the day, I had driven past my house several times—waving once to Steven, whose face was smudged up against the playroom window—but each time I had been in too much of a rush to stop. I was home relatively early now. I just hoped that none of the patients I had seen in afternoon clinic—Otis in particular who was complaining of a headache but had no fever and seemed in no great distress—would suddenly worsen and necessitate my going out again.
AIDS, AIDS, AIDS: t
he word seemed to inform my every action. Like barnacles on a ship’s hull, the stories of the Scottys, the Clydes and the Otises of the town clung to me. Here we were, in our corner of east Tennessee, the embodiment of small-town America, seventy-two churches watching over the flock, the perfect symmetry of the Lions and Kiwanis and Rotary clubs, with their staggered meeting dates. Our town had its minor celebrities: the TV weatherwoman who did Zak’s Furniture ads on the side, the sports anchor, a white man, imitating the dress and manners of Bryant Gumbel, the young schoolteacher who had made big bucks on Jeopardy and put us on the map for one night. And wherever you were—be it on the high end of this matrix in a Carl Jones faux-Victorian on a double lot in Roundtree, sitting in your jacuzzi in the master bath, looking out over your Japanese garden, or else the proud possessor of a double-wide in a southside trailer park—you viewed the town with a certain satisfaction, a reassuring sense of being insulated from all the foolishness you saw on TV: subway vigilantes, mass murders, drive-by shootings, AIDS.
AIDS simply did not fit into this picture we had of our town. The TV stations and the Johnson City Press did a fine job of parroting what the wire services carried about AIDS. But they never succeeded in treating the deaths of Rock Hudson or Liberace as being any more significant to our town than famine in the Sahel or a plane crash in Thailand. You could shop in the mall, cut your hair in Parks & Belk, pick up milk in the Piggly Wiggly, bowl at Holiday Lanes, find bawdy entertainment at the Hourglass Lounge—and never know that one of my patients was seated right next to you, or serving you, or brushing past you in the parking lot, a deadly virus in his or her body that was no threat to you, but might nevertheless cause you to stand up and scream if you knew how close it was.