A Star of Hope

By Paul Aronowitz|Monday, August 01, 1994
Come to Room 1052 immediately, my voice pager squawked. It was 5 A.M., I was in the third month of my internship, and I had just finished working up an admission. I rushed two floors up and jogged down the hallway. The lights were dimmed for the night, and a chill wrapped around me as I hurried to Doris’s room.

Doris was my favorite patient. A tragic testament to the ravages of systemic lupus erythematosus, she was a 42-year-old mother who had been virtually bedridden for nearly three years from the complications of her disease. In this devastating immune system disorder, the body attacks itself, creating inflammation in the organs, joints, and tissues. Doris had become disabled because of a serious infection in one of her hips. The hip joint had been removed, but it was never replaced because she was never stable enough for another operation.

Her kidneys functioned so poorly that she was close to requiring dialysis. She had anemia, a stomach ulcer, and chronic diarrhea. Like many lupus patients, Doris was being treated with steroid hormones that suppressed the immune cells that were causing her problems. But the steroids that suppressed Doris’s lupus also weakened her defenses against bacteria and viruses. She had suffered from pneumonia and urinary tract infections. Almost every organ in her body was directly or indirectly under assault from her disease.

At the time I was caring for her, Doris was being treated for a large infected ulcer on her lower back. Because of life-threatening infections from the bacteria that had colonized her ulcer, she was getting intravenous antibiotics, and twice in the previous two weeks her intravenous lines had become infected.

Some doctors might have found Doris’s case depressing, the inevitable progression of her lupus an empty and demoralizing vision of how far we have yet to go in treating and curing chronic disease. I didn’t happen to feel this way.

Though she seemed to develop a new medical problem every day I took care of her, I enjoyed Doris’s company. Her laugh was infectious, her humor dry and self-deprecating. Despite her disease, despite being divorced and trying to raise a rambunctious 11-year-old daughter alone, Doris managed to hold on to her dignity and sense of humor. Somewhere deep in her heart she kept alive dreams of being well, an exploding star of hope that I was lucky enough to glimpse from time to time.

Help me with this unruly daughter of mine, she would say. Get me well so I can get up out of this wheelchair and show her who’s boss. She would laugh loudly, her gnarled, arthritic hands crossed in her lap, tears filling her eyes, a broad smile across her face.

I had no doubt that Doris believed she would get well. After all, I imagined her thinking, no one her age with a daughter, an apartment, and a life to live could afford to remain sick for long. She had once worked as a clerk, but it had been years since she was able to type. Now her disfigured hands could barely hold a pencil to do the crossword puzzles she worked on late into the night.

To my astonishment, despite her severe illness, Doris smoked cigarettes. It seemed to be her way of saying that she could do just as many unhealthy things to herself as any healthy person. She regularly sneaked smokes in her room, drawing on the cigarette by the open window and flipping out the butt the moment someone knocked at her door. No one ever caught her, but we all recognized the smell of cigarette smoke that wafted periodically from under the door. She refused to discuss the issue. You’re my doctor, she’d say with a smile, not my mother.

As I jogged down the hall, I knew the call from nursing meant trouble. It was not Doris’s nature to have a minor problem at 5 A.M. When I got to her room, I found four nurses crouched over Doris, who lay facedown on the floor in a pool of blood. She was muttering something about her bad luck.

Doris, an inveterate night owl, had been playing solitaire and drinking a diet cherry soda when she dozed off and fell forward out of her chair, landing on her leg and face. We put her in bed, and I spent the next two hours meticulously suturing a large gash over her right eye and another on her right thigh. I knew Doris’s skin was exceptionally fragile, since the steroids she took for her lupus also caused the protective barrier of collagen fibers beneath the skin to thin. I worried that the new wounds might become infected.

Over the next few days Doris’s wounds slowly healed, and, to our surprise, things seemed to start going well for her. She found a temporary foster home for her daughter. The plastic surgeons were considering performing a skin graft that would cover the ulcer on her back and allow it to heal. And her lupus, for once, was not acting up.

But not long after that I stopped by Doris’s room early one morning. I eyed her breakfast tray for traces of cigarette ash and noticed that her food was untouched.

I just can’t believe this, she said sadly. It’s as though someone out there doesn’t want me to get out of this crazy place. I say my prayers, brush my teeth, and don’t hurt anybody. I’m even a nice person sometimes. A tear rolled down her cheek.

Doris, what are you talking about?

I’m talking about this! she cried, raising both arms toward me. Her hands hung limply from her wrists. She couldn’t lift them.

As I examined her, I was unable to reassure Doris that she would be able to lift her hands again. I was completely baffled about what could have caused the wrist drop.

Most of the specialists in the hospital were already familiar with Doris’s case, so a few quick phone calls drew a flurry of doctors to her room. Each came up with a long list of different reasons for Doris’s problem. No two seemed to agree about what was wrong.

The rheumatologists, who treat lupus since it is an inflammation of the joints, thought the disease was now causing inflammation in her blood vessels and nervous system. In a booming, confident voice, a senior rheumatologist matter-of-factly advised me to give Doris higher doses of steroids and to call the surgeons in to do a biopsy of her sural nerve, a large nerve near the calf. Although the biopsy would involve incising her fragile skin, inspecting the nerve for inflammation might confirm his suspicions.

The neurologists thought the steroids were causing Doris’s wrist drop and advised me to reduce or even discontinue them. They advised me to order nerve conduction studies, tests in which needles are inserted into opposite ends of the arm to measure the rate and quality of nerve signals. A disturbance in the signals might tell them what was going wrong.

The infectious-disease specialists suspected a new bacterial or viral agent was at work. They recommended taking bacterial and viral cultures of Doris’s blood and giving her more antibiotics.

Late that afternoon I went to Doris’s room and explained what the specialists had recommended. Doris sat staring down at her hands. So much of her body was useless to her now. I tried to imagine what she was feeling. I couldn’t. She lifted an arm and rubbed the back of it across her eyes to wipe away the tears rolling down her cheeks.

In other words, Doris said bluntly, you guys have no idea what I have. I nodded. And now you want to poke needles in my arms, connect me to AC current, cut my leg open to snip out pieces of my nerves, and raise or lower my steroids--you don’t know which-- until you come up with something? She shook her head in disgust.

I began to defend the specialists, carefully repeating the reasons for the procedures, but I stopped midsentence. I realized that to them Doris was an interesting and frustrating case of lupus. She was not a complicated 42-year-old mother intent on walking out of the hospital with a cigarette tucked between her lips. To them she was the patient described in a stack of medical records that stood four and a half feet high.

I’ll have no part of it, she said after a few minutes of silence. I felt exhausted and overwhelmed by Doris’s despair. It was early evening, and her small hospital room was cloaked in gloom. A thick San Francisco fog blew by outside. I realized I’d been on call for nearly 36 hours. I walked out, leaving Doris sitting by the window, watching the light fade.

When I stopped by the next morning, Doris said, I’m sorry I was mean to you yesterday.

You were angry. It doesn’t matter.

Are we still friends? she asked.

Of course.

Gee, how I could use a cigarette, she said, with a soft chuckle. Doris couldn’t lift her hands to light or smoke a cigarette. The nurses had to feed her meals because she could no longer hold a fork.

Later that day I met with my supervising attending physician. A quiet, methodical man, Dr. Rood listened carefully as I told him what had happened with Doris. Sensing my hopelessness, he came back with me to reexamine her.

You know, he said to me as we left the room, she can try and then give up, but you’re her physician. You’re not allowed to give up.

I was silent, stung by Dr. Rood’s gentle reprimand.

Go back to her chart, he said, putting his hand gently on my shoulder. Go over it carefully. Make a list of her medicines and we’ll scrutinize it together. We need to make sure that this problem--this wrist drop--is not something we’re doing to her.

Doris was taking 25 different medications. I worked late into the evening reviewing her chart and taking notes, making the medicine list, and going over tests she’d had before I began caring for her.

The next day Dr. Rood and I met in his office. A breathtaking view of the Golden Gate Bridge filled the window behind his desk; the pages of a half-edited medical textbook lay open before him.

I’m sorry, he began. I didn’t mean to say you aren’t doing a good job of caring for your patient.

You were right. I shouldn’t have given up. It’s just that--

You’re friends, he finished for me.

I remembered playing gin rummy with Doris at 3 A.M. on an unusually quiet call night several weeks before.

No matter what happens with all of this, said Dr. Rood, Doris will have a very hard time when you rotate off service in a few weeks. Coming from him, this was a great compliment.

We went over my notes, and then Dr. Rood sat back in his chair, rubbing his mustache.

Why is Doris on metronidazole? he asked, referring to an antibiotic that Doris had been taking for almost six weeks. Metronidazole, commonly known by the brand name Flagyl, is frequently used to treat infections caused by anaerobic bacteria, bacteria that don’t require oxygen to grow. Doris was taking it for her infected back ulcer.

I seem to recall, said Dr. Rood, that metronidazole can occasionally cause numbness in an extremity. If the drug was interfering with Doris’s nervous system, it could explain her wrist drop.

Is it reversible if the drug is stopped?

I honestly don’t know.

I’ll try anything.

Then go to it, Dr. Rood said, shaking my hand.

I stopped by Doris’s room to tell her that we were taking her off metronidazole and to explain why. She was sitting in a chair by the window, and her daughter was bouncing up and down on her hospital bed.

Sounds like a shot in the dark, if you ask me, she said.

Well, I didn’t, I joked, feeling hopeful again, and it is. Doris chuckled softly.

There was no change the next day or the day after, but around midnight that night, I was almost caught up on my work, so I wandered over to Doris’s room. Like some desert animal, she was most alert and active between midnight and 5 A.M. As I knocked at her door, the unmistakable odor of cigarette smoke greeted me. When I opened the door, I found Doris seated by the open window, grinning sheepishly, her hands empty.

They’re working again, she offered matter-of-factly.

What?

My wrists. I can’t do everything, but watch this. With great effort she lifted her hands from their drooping position and smiled proudly.

Over the next several days, with the help of physical therapy, Doris’s wrists returned to normal. Her back ulcer had also improved, so that she no longer needed antibiotic treatment. She was in a good mood again.

Listen, she said a few nights later, staring down at a hand of gin rummy. I know I’m not the easiest person to take care of, but I want you to know that I appreciate all you’ve done.

I thought about how little I’d really done for her--she was still in the hospital, and her daughter was in a foster home because her mother couldn’t take care of her anymore. Doris couldn’t walk, work, be a mother, or enjoy the pleasures we so often take for granted. She was able only to dream of a time when things would be better.

Yet, in the end, I had taken care of Doris by attending to details like her wrists. These details, I knew, were not small things to her. Doris had taught me a lot about what it means to be a doctor. There was no way to tell her that she had become more than a patient--that in her own quiet way she had become a friend and, finally, a teacher.

Don’t mention it, I said. And I drew another card from the deck lying facedown on the table between us.
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