He would not meet my eyes. The red sports cap on his head was a barrier between me and his downturned face, providing him with another layer of protection as he sat hunched over on my examining table, his hands clasped together in front of him. Shaking his head, he muttered, "It all started to go bad when I was nineteen."
I stared at the NBA sports logo on his hat and pondered those words for a moment, sorting through my recollections to see if I had heard this story before. I realized I had not.
I first met him in my office when he came with his wife after a long hospitalization a few weeks before. He had recently been diagnosed with human immunodeficiency virus (HIV) and had become very ill with Pneumocystis pneumonia. After being followed by another infectious disease physician during that time, he had been sent to me to take over his care.
"I did not like him," he had told me at our initial meeting. His posture was relaxed, but his eyes studied me carefully. "He never explained anything to me."
"I see," I stated as I reviewed all the blood tests from his hospitalization and his outpatient care. He had acquired immune deficiency syndrome (AIDS), of course, but was therapy naive. The regimen he was on was working. "Well then, let's talk about your situation." I explained his disease to him and his wife and answered all their questions. As the visit progressed, I could see that they were slowly beginning to seem more comfortable.
I took a deep breath and began to ask the hard questions as delicately as I could. "How did you get HIV?"
"I know who I got it from," he responded. "I made a mistake and stepped out. I should have known better." He stared straight in front of him as he talked.
"What about you?" I asked turning to his wife. "Have you been tested?"
She tilted her head at me and answered casually. "I'm positive too. You'll be seeing me next."
There was no easy response to that. I recommended counseling to them as a way to cope with their disease, and they promised to look into it. As they were preparing to leave, they mentioned that he was having fevers occasionally. I asked him if he had a follow-up chest radiograph after his pneumonia.
"I don't think so," he replied.
"All right, let's get an x-ray then, and I need to check your blood counts and viral load.
Mutually satisfied, we parted ways.
The radiograph showed no resolution of his previous infiltrates. He had a computed tomographic scan of his chest that showed hilar adenopathy and infiltrates.
All three of us met in the office again; having gotten to know me somewhat, they were more relaxed. As a couple, they obviously cared for each other deeply, and they would make jokes and laugh together often. I never heard a critical word from her about how he had brought the virus into their home.
"His fevers are getting worse, doctor," she said. "And he sweats a lot too."
"I think we need to admit you," I said to him. "We need to find out why the infiltrates and lymph nodes are there. It could be tuberculosis or Mycobacterium avium.
"We need a biopsy." Reconstitution syndrome would cause fever and lymphadenopathy but not the infiltrates.
He shook his head in a lazy roll. "You know I hate the hospital, doc."
"I know and I'll try to get you out as soon as I can, but it will take too long to do this as an outpatient. I can get a pulmonary physician involved and a biopsy done much quicker in the hospital." Even as I was saying the words, I knew that once a patient was hospitalized, control of events slips from our grasp, and complications can occur. "I'll do the best I can to speed the process up."
He acquiesced and admitted himself the next day. A straightforward bronchoscopy and biopsy turned into a month-long admission that included a video-assisted thoracic surgery and multiple cultures for fevers. He was finally afebrile and was discharged on a tuberculosis regimen while awaiting cultures. Subsequently, the cultures all grew out Mycobacterium avium complex; so now, he had to take 3 antiretrovirals, 3 antimycobacterials, and his prophylactic medications.
In my office on a follow-up, he pursed his lips together. "Too many medicines, doc. But I'm better. Except that my feet hurt all the time. It feels like I'm walking on a hot floor."
Neuropathy, most probably secondary to the HIV. "The virus is affecting your nerves," I explained. "I'll send you to a neurologist to be sure, but I don't think it is medication related." I checked all his medications to be sure.
He came back to me on one more drug and with a bad news. "The fevers are back," his wife stated. She had started out with a robust T4 count but a high viral load. On her antiretroviral cocktail, she was tolerating the medications reasonably well and was moving ahead with her plans to return to school.
Now what, I wondered. I flipped through his blood work and noticed that his alkaline phosphatase level was still elevated. "Let me repeat your liver tests again."
The repeat alkaline phosphatase was in the 800s. I faced them squarely. "We'll do a liver biopsy," I saw his face tense and hurried on, "as an outpatient. No hospitalization."
When he responded, "Okay," I began writing out the necessary prescriptions.
The interaction between the husband and wife was more strained now. When I probed gently, he flicked a thumb at her. "She's too busy for me. Either in class or with her friends."
Her objection came immediately. "I am not. You're always in your room. You never come downstairs anymore, much less go outside the house."
"Is this true?" I interjected, playing referee.
"Mostly," he shrugged. "I can't work anymore; the pain in my legs makes it hard to walk."
"Are you depressed?"
His wife answered that one, "He is really depressed."
"I know you don't want to take any more medications, but I can help you with the depression. Are you still going to the counselor and support groups?" They had gone for a few weeks in the beginning.
"They don't help me anyway," he said, looking down at his hands.
"I'll give you a prescription for an antidepressant. Try it for a few weeks, and see how you feel." He held out his hand and took the prescription I gave him.
The liver biopsy went off all right, but the fevers continued. He had come to the end of his rope by this point.
"I'm stopping them," he declared. He had come to the office alone on that day.
That wasn't a surprise. The pills were getting to him. "It's up to you. Some people do take drug holidays, but the viral load always bounces back," I quoted the literature to him scrupulously, trying to change his mind.
"No, not a holiday, forever. I am not taking another medicine again."
"Did you try the antidepressant?" I queried.
"No. I don't want to take anything."
Backed into a corner, I tried to negotiate my way out. "Fine. But just take the antidepressant and the sulfa drug. That's all. We'll forget the rest."
"Then, just the depression medication," I appealed to him desperately. He was not suicidal or psychotic. The man was clearly in his right mind. I could not force him to take the medications.
"I lost the prescription," he admitted grudgingly.
I eagerly wrote him out another prescription and put it into his hand. "Just try it for a month, and we'll see how you feel."
"I can't live with it, doc. What I did to her." He hung his head.
I lay my pen down on the table. "She only wants you to be well. She never blamed you."
"I know, but her parents blame me. It's easier for me to stay in my room."
"You can't live your life that way."
"Maybe I don't want to live anymore," he muttered.
My senses leapt into high alert. "Are you going to try to hurt yourself?"
He snickered. "No way, I can't do that." His tone left me in no doubt that he did not intend to commit suicide.
"Then take the medication and go back to the support group. Things may improve. Please come back to see me," I requested, "even if you still don't want to take the pills."
"Okay." And he picked up his cane and walked out the door.
I did not see him for quite a few months, although I asked his wife about him often. Then I saw his name on my schedule and found myself talking to a red sports cap. He had been having fevers, of course. I did not even ask about the antidepressant, I knew he had not taken it.
"What went bad?" I asked him, picking up on his comment.
"I was in a car accident. When I got out of jail, I thought things would improve."
Jail? This was new to me. "Why did you go to jail?"
"I lost control of the car and hit a pole. It tore the car clean in half, and I walked away from it with a few scratches."
"Was there anyone else in the car?" I asked, although I was not sure I wanted to hear the answer.
"The passenger died," he replied flatly. "We hadn't even been to a party or anything; no drugs or booze. I was in jail for 2 years. I walked away from that and got this. Now I've ruined her life too. It never gets better."
If there was more to the story, he did not volunteer it, and I did not want to push. The demons that drove this complicated man were becoming more apparent. I could never understand his pain, but I had to try to get him to see that he had a future. "If you live, there's a lot of good you can do."
"Not any more," the NBA player shook from side to side.
"Punishing yourself by denying yourself medical care isn't going to make it better. Are you willing to go to the hospital if you get sicker?"
"No," he stated clearly. "No hospital. I'd rather die."
I closed my eyes for an instant and opened them. Take one step at a time, I reminded myself, even if it is a baby step. "Then let me draw your blood and get an x-ray, and we'll take it from there."
He nodded reluctantly. He still had not met my eyes, but that was all right. He had come to the office and began a dialogue.
It gave me hope.