"If I'm still alive"

"I was just about to call you:" is how JC answers the phone. The plan, as it stood this morning, was that he was going to be discharged, and that he would walk to clinic and I'd give him a ride home, as he's definitely too weak to deal with walking to the minibus-taxi rank and taking a taxi home. "Well, I beat you to it. What's up?"
"Doc, I'm going to go home tomorrow eh?
"Oh-ok," I'm not sure why the plan has changed, but I can only surmise, that for the second time in as many days, the lymph notes that are swollen in his neck, and those in his abdomen, haven't been pierced by a needle, which is what we're waiting for.
"Can you do me a favor?"
"Yeah, sure."
"Doc," there is a pause on the other end, "can you go get me a loaf of bread?"
"No problem. I'll head to the bridge and grab you some bread. I'll see you in a while."

I need to head to the bridge that crosses over the busy street, and joins Bara to the outside world. It is the only real pedestrian entrance into Bara. I've never seen another white person on the bridge, when I've had to take taxi's to work and come in with those who don't drive to Bara-being most of the nursing staff, patients, visitors, construction men, radiographers, and just about everybody else who works at Bara I have patient files in my bag, and wonder if I'll get checked by security as I walk past them. I have my stethoscope right on top, which often serves as my immunity card to bypass security hassles in the hospital (and so far once for being pulled over as well).

I see some scones and buns for sale, but not any bread loaves. So I go all the way over to the other side, to where some stores line the street by the taxi rank. There is a tour group of white haired older folks. I try to hear their accents, not sure by their dress if they are European, or American, Or Australia. They are all homogenized. I feel slightly righteous. I may not venture into Soweto to hang out with the locals, but after 8 months I feel at home and at ease walking through the crowd. I cringe as I see one of the group take a photo of a woman selling corn.

I enter the mini supermarket.
"Eh, bubba, your bag." The security guard wants me to leave my bag at the door, where other bags are set into cubby holes, much like those found in kindergarten classes. No way, I think to myself. Not with the patient files in there, and also the sentimental value my stethoscope has...
"Eish, I just need a loaf of bread, where are they?" He points, and conveniently they are right by where the queue for the checkout stand starts. "Fine, I'll just walk there, grab one and get in the queue. I'll keep my bag with me." He nods in approval.

I get the bread, and head back out. The white tourist group has moved a bit further down the way, they are still all in a large bunch. Clinic finished on time, and so I'm taking advantage of what I feel is an extra hour to go see some of the patient that I'm following on the wards. I stop on the bridge, over the road, and just stare. To my left is Bara. To my right is part of the heart of Soweto. Actually, Bara is probably THE heart of Soweto I recognize faces walking past me, those of the nursing staff from various wards. Some of the HIV counselors are leaving as well, and they stop to say hi.

I chat with one of the counselors briefly about a patient I started on HIV treatment today. One of the consultants had see this guy last week and had scheduled him to come back and start medicines today, and as I was having a slowish day, he asked if I would see this patient. Dr T called the patient from the waiting room, and a cachetic (wasted appearance), guy stood up, and walked toward us. He was unsteady on his feet, and stood before us with labored breathing. He looked like somebody I would have admitted just based on how he looked. How ill and distressed he looked. Dr T shook his hand and explained that he was behind schedule and was it ok that I saw him and started his hopefully life-saving) medications.

"He's ready to start 1a." 1a is the starting HIV regimen for adults in SA. d4T, 3TC, and Efavirenz. I knew to start him on 1a. Dr T doesn't say this as if I don't know which medication to start him on, but rather to gently let me know that he is aware of how dire this patient looks, and that I just need to start treatment, and not admit him, nor go fishing for more problems-and in fact the patient is already on prophylactic TB treatment.

We walk to the end of the hallway, and I lead him into my room. I review his chart, and examine him. He's failed, twice now, to go register at the TB clinic. I get slightly irritated that this hasn't happened. But realizing that the TB clinic is equidistant in the opposite direction from the Bridge, and where the taxi stand is, it's no wonder the guy hasn't gone to register. It's likely he doesn't have the physical, and maybe even emotional strength to walk that far.

I examine him. The thrush is still growing in his mouth, at the base of his tongue. I look up at his palate and see a Kaposi Sarcoma lesion. I glance and see that it hasn't been noted before, and I feel oddly proud that I have found it. This is a worry, though, because with the HIV treatment, if there are lesions in his lungs, they could swell when the medications are started and worsen his already fragile respiratory system. There are other scattered KS lesions on his body. I listen to his heart beating away at 140 times a minute, double the rate of what a normal adult heart rate should be, and beating at the rate of a newborns heart. It's beating regularly, and I'm fairly certain that the significant dehydration, plus the lung disease is what is making his heart work at twice a normal rate.

I look over the labs. His kidneys work. His liver studies are normal. He has 2 CD4 cells. 2 lonely CD4 cells to fight infection. I imagine his CD4 cells hanging out, circulating in the body.
"Hey Bob! look, down there," as he points down the blood vessel.
"Oh shit, is that a colony of bacteria growing?"
"Yeppers. We're not going to be able to take out all of them."
"Lets just surrender."

I take out the sheet that we use to give information to all of those who start 1a. It has the medicines, a diagram of how to take them, as well as the side effects. It actually almost feels pointless to talk about the risks and benefits of starting the medicines. For without them... I go through the sheet. I make an appointment for him to come back in 2 weeks, and stress stress stress that he must come back if he feels worse.

I'm turn to head down the ramp of the bridge, and run into another counselor She served as the interpreter today. After we'd finished tying to figure out whether a young woman was really taking her pills or not, I asked if she would help me interpret over the phone. When I arrived to work this morning, I pulled out DM's file to get a phone number. I needed to give him a stern warning/lecture to get his ass back to the hospital immediately. Mourning was over. I was sorry his brother had died, but he had been let out for a weekend pass only. And the weekend pass had now gone on for 10 days. I was annoyed to see that the only phone number was for his sister-in-law. That could make it tricky to get a message to him, without letting it be known what was really going on. I had talked to the sister-in-law for all of 30 seconds this morning when she said, "Sesotho."
"Ok, I will call back.:

I explained the situation to the counselor. She grabbed my phone and made the call. They exchanged polite introductions. And then I head all I needed to hear.
"Dead. On Sunday. Ohhhhhhh, so sooorry," and then the phone was abruptly handed to me, as if I needed to hear for myself.
"HI again..." I expressed my condolences and then said goodbye. There was really nothing else to say. "Shit!" I said out loud. DM had to make one of the toughest decisions, and he made the one he thought he needed to make, as much as we were opposed to his choice.

As I headed off the bridge, and started walking toward the wards, I ran into AW. AW is a patient who we were asked to evaluate on Monday. He is a man, in his 30s, who has Non-Hodgkin's lymphoma, which is what the found when they biopsied the mass that had been growing for months under his jaw. And at the same time, tested him for HIV, and found him to be HIV positive (which wasn't a surprise). He is escorting a woman to the bridge.
"Are you his doctor" she asks.
"No. Well yes, I am one of the doctors taking care of him."
"Well, tell me what's going on with him."
"What do you mean?" I ask this to buy time, and to see what she knows. I've been here long enough now to know that HIV is a secret, often times. People don't mention it. It's like RD's wife finding out he was HIV positive. She found out a few hours before he died, when he asked her to pass him his HIV medicines.
"I mean, when is he leaving the hospital?"
"I'm not sure, they need to finish evaluating his cancer. Why?"
"We have a funeral to go to on Saturday."
"Well, I bet he can probably get a weekend pass, as he's just waiting for CT scans and other tests for next week." AW, himself, has kept quiet the whole time. I look at him, "I'll come see you in the ward and we'll chat. I have one other patient to see before you."
"OK doc, I'll be there in 5 minutes."
"Take your time, it'll take me longer."

VM was suppose to get her abdominal ultrasound today. She's been in the hospital 6 days now. And she was actually looking better this morning. The swelling in her legs and abdomen had gone done, the pains in her stomach were better, and she was eating. I told her to make sure she went for her ultrasound today, and that I'd see her in the late afternoon. He bed is at the end of the corridor, and as I walk down, she has a grin on her face.
"I walked to the ultrasound department" she informs me.
I grab the chart and look at the report. Normal liver. Normal kidneys. Normal gallbladder. Minimal amount of ascites (fluid in the abdominal cavity). But the sleen is enlarged, has microabscesses (small collections of what is likely infectious material) as well as enlarged lymph nodes in her abdomen. All suggesting TB. She did, in fact, have an abdominal TB IRIS. And she's improving. We chat, and she's doing her best to convince me as to why she should be able to leave the hospital, and go home. Little does she know that I am already in complete agreement, but it's nice to see her have some energy in her, so I let her go on. Last week, when she came into the office, swollen from the abdomen downwards, looking miserable and in pain, and having gained 8.6 kilograms, (the equivalent of 8 litres of water, or 2 gallons) and looking depressed, I wondered if I would be wrong. First time I met her, I wasn't sure she'd make it. Then starting TB treatment she looked great. Then crappy again. And now great again.
"Ok, I think you can go tomorrow, you have an appointment to come back and see me on the 27th anyways." She smiles, looking thrilled to be able to leave. "You're going to do great, ok. You are going to get well, and stay well." I say this, perhaps, to also convince myself.

I make my way to ward 22. Before I get to AW, I see SM. He's walking down the hallway.
"Sorry doc, I was in the shower." He thinks I was looking for him.
"You're looking good, how's the breathing." I guestimate his respiratory rate has settled from the 40s when I saw him in the office, to the low 20s. And he's talking more comfortably.
"Much better."
"Ok, I'll come back and see you tomorrow."
He's still waiting for a test result to see if he has PCP pneumonia...

I find AW sitting on his bead. And I draw the curtains closed, which only gives a false sense of privacy.
"Does she know?"
He shakes his head no.
"Why not?"
"We're not really married anymore, we don't live together."
I assume, or hope, that implies that either they are not sexually active, or that they are using protection.
The hematology team have asked us to start HIV treatment ASAP, while he is in the hospital. Starting the treatment in the hospital isn't really ideal, as there seems to be better compliance when it is started in the clinic. Also, AW lives close to a clinic that can give him HIV treatment, but there may be a delay in him getting an appointment there. So we've been debating what is the best option. The hematology team is impatient, and they wanted the treatment started Monday. Fair enough. AW and I talk about the logistics, and have to plan it around a possible weekend pass out.
"I guess I have to tell them?"
"Well, what do you think?"
"They aren't going to be happy. My mom is going to cry and be sad."
"Why do you say that?"
"My brother died of HIV. But he didn't take his pills right. He missed a lot of doses. In the end he got real sick and died. My family is going to be mad, but I guess I got to tell them. I just got to tell them. If they get mad, they get mad. Nothing I can do about it. I just got to tell them."
The way he keep repeating about telling them, makes me think he is trying to convince himself, more than explain to me.
"It is probably best if you tell them, but I can have the counselors talk to you about telling them." I just stand there for a minute. It's the stigma of HIV that will continue to make HIV/AIDS such an insurmountable disease in South Africa "It's not easy to tell people these things, but it will be best to be honest." I empathize I can think of many times, year ago when I was coming out, how I kept repeating the same mantra to myself: I just need to tell them. Just need to get it over with. We finalize our plan. He'll be away this weekend on a weekend pass, then will collect his medications on Monday. We've decided to postpone starting until Tuesday. That way he doesn't have to take his pills bottles home, which may release his secret before he wants to. Unlike RD, AW wants to be frank about his disease.

I finally make my way to JC, to drop off the loaf of bread.
He laughs. "What am I doing to do with a whole load of bread?"
"That's what you asked for, a loaf. Share it with the others?
I flip through his chart. He's basically wasted this week in hospital. The lymph node excision that the surgeons were to do on Tuesday never happened. The ultrasound-guided lymph node biopsy/aspiration (in his abdomen) that was suppose to be done today never happened. He stated TB treatment this morning. I think it should have been started a week ago. I've watched him lose weight this week. And get weaker.
"How's the ensure?"
"It's sweet."
"Well, you can dilute it, just use 3 scoops, not the full 6."
"Dr T was surprised to see a can of it here. She didn't think the dieticians had any for the patients."
"What did you tell her?"
"I just let her believe it came from them, not from you."
"Thanks."
We talk a bit. He's worried that if he has to do DOTs (directly observed therapy-where he will have to go to clinic each morning and swallow his TB pills in front of a nurse) that it will be very exhausting, as he doesn't think he has the strength to make the daily pilgrimage. I think that the extra calories he'll burn each day walking to the clinic would be better saved... He'll be discharged tomorrow, and will come back in early March for the biopsy, and for review in the ID/HIV clinic.
"I'll see you then?" he asks.
"Nah, you'll see Dr T. I'll be out of the clinic for a bit," he seems disappointed. "but don't worry, I'll be in the clinic again in April. I'll give you a shout in a few weeks to check up on you, and make sure you're doing well. We'll meet up in April."

His reply: "If I'm still alive."

And it is the first time, in the almost 2 months of taking care of the sickest overall population I have ever encountered, with such high mortality, that somebody has actually verbalized insight into their own mortality...

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