Failure and Success

Failure:

 

JC is the third or fourth patient I see in clinic today. He sits down, shows me his ultrasounds report, asks me his CD4 count, wants to know what is the next step. I'm caught off guard, because I don't even know what step we're on. And I'm pleasantly surprised. I find his direct questioning a deviation from the usual patient encounters. It shows he is concerned about his health. I glance over his details, I realize his birthday is a year and a day after mine. I can't explain why, but I know I'm going to like him.

 

He's new to our clinic. Yet he has been on antiretroviral treatment for 6 months, which was started at an outside clinic. This is pretty unusual for persons who have been initiated at a clinic to be referred to us; mainly they end up here if they move closer to our clinic, or if there is a problem. And JC is here because there is a problem. Though, I think "problem" is a bit of an understatement.

 

I needed a minute to digest the note from his visit 2 weeks ago. He was seen by one of the attendings/consultants, and there is a detailed note. Something really isn't right. JC was started on treatment with a viral load of 60,000, and a CD4 count of 20. After the usual 8 weeks, his viral load plummeted, but his CD4 never picked up, and in fact, testing 2 weeks ago shows that his viral load is suppressed (less than 25), and his CD4 count is 24. He seems to have immunological failure (his CD4 count hasn't risen), but has a good virological response (his viral load is undetectable).

 

But there is more. Way more. He's lost a significant amount of weight. Actually, he's lost a shit load of weight in the past 6 months. He's gone from 63 Kg (138 lbs) to 49 Kg (108 lbs) in the past 6 months. He has lost 14 kg (or 30 lbs). No cough, no fevers, no sweats. TB would be the main culprit causing the weight loss in him. But his work up for pulmonary TB was negative.

 

When our doc saw him last week, she noted his complaints of stomach pains for the past 6 months, as well as back pains. These have been treated with pain medicines and anti-ulcer treatments, and they haven't gotten better-at all. And then she examined him.

 

I flipped back through his notes from the other clinic. Nobody has listened to this man. For months he has been saying he isn't well, and nobody has listened. For 6 months they watched his weight plummet. For 6 months they gave him antacids. For 6 months they continued to note that his CD4 wasn't picking up like it should.

 

And for 6 months, they didn't notice the mass in his abdomen. Which he has known about. Back in March, it was mobile. But for the past 3 months it has been fixed-- unable to be moved about. The doc last week noticed it. Unfortunately, the abdominal ultrasound shows lots of abnormalities, but didn't mention this mass.

 

I sympathize with this man. Sitting with him, I had flashback to where I was 5 years ago. In the GP office in Ireland, explaining how all of a sudden I couldn't run, how I was winded just trying to go up stairs, and how miserable I felt with a persistent cough. I told him there was something wrong. I was given a script for allupent (which is basically a placebo medicine-technically an expectorant), and sent out the door. It's the exact treatment that JC has been getting. A dose of failing to really care about the patient, and pacification with placebo medicines.  There are so many red flags in his story, that I don't even know where to start explaining things to him, partly because I know the outcome isn't looking too good.

 

We talk, I tell him my frustration that he has been literally wasting away for 6 months and nothing has been done, and that I think it's best that I admit him to the hospital so that he can get a CT scan, a endoscopy, and more work up. I tell him that based on the ultrasound results, it looks like he may well have TB in the abdomen, but that the biggest concern is that he also has a lymphoma or other cancer in the abdomen as well. We negotiate. He'll spend the weekend with his wife and 2 year old child, and then will be admitted on Monday. I give him my mobile number so that he can call if anything changes. Initially I balked at handing out my number in clinic, but I'm realizing that negotiating/manipulating the system here is beyond the capability of many people (as it is in the US as well), and that most will likely be too embarrassed to actually call, but at least they will have the option.

 

 

Success:

 

It's mid-afternoon, and I scan the people sitting in the waiting room for VM. She has been sick since she came to the clinic three weeks ago. I'm relieved she made her appointment today. I call out her name, and watch as she walks toward me, and she smiles. She looks completely different. For a minute, I wonder if it was her I really saw at that initial visit.

 

It was late in the afternoon three weeks ago. She had decided to not start HIV treatment back in November, and then had changed her mind and came to the clinic. And she was ill. Chronic diarrhea. Losing weight. And she was coughing, with sweats. She had horrible thrush, and wasn't able to drink enough to make up for the lost fluid of the diarrhea. She really needed to be admitted. But she declined. (I almost said refused, but that's medico-legal speak, which means if something bad were to happen because she didn't go into the hospital, then it's her own fault, and the clinic/hospital/doctor aren't responsible). But she couldn't go into the hospital. If she did, and were away from her home at night, it would be likely that her home (shack) would be broken into and her stuff stolen. She needed to be home. It was too late in the day to do labs, or get medicines, or get xrays, so she would have to take 3 mini-bus taxis home, and return the next day to do the stuff, and then return the following week for results.

 

When I saw her 2 weeks ago, she looked even worse. And I feared that she wasn't going to make it. Her chest xray confirmed likely pulmonary TB, which would mean she would need to be on TB treatment for 2 weeks before starting her HIV treatment. And so that's what we did. Gave her the pills for TB, and said we'd see her again in 2 weeks to start her HIV treatment.

 

And today, after 2 weeks of TB treatment (as well as treatment for diarrhea) she finally feels a bit better. It was a huge relief to see how well she was feeling. Again, I found myself thinking back 5 years, and retrospectively realizing how lousy I felt when I had TB. Once the TB treatment kicked in, and breathing became less laborious, and I had energy, it was easy to smile. You literally feel like you get your livelihood back. And I completely understood why she was smiling. 

 

Three weeks ago I wondered if she would really have the strength to take the 3 mini-bus taxis back to Bara. Or would she simply resign herself to what she saw as her fate, stay in bed as the TB continued to consume her, as the diarrhea wreaked havoc on her electrolytes, and at some point die at home. She's going to make it. And having the privilege of helping somebody like VM get healthy is the most rewarding aspect of this job.

 

-

Keeping Silent

I sat at the computer this morning to review labs. And I don't know why, but the moment I saw that RD had a blood culture that was growing a gram negative organism, I knew he was dead. I can't explain why or how I knew. I just knew that the minute I saw his culture results. I knew I need not even bother walking to the ward. His bed would be empty.

 

I'm quite pissed about the whole event. And you can bet I am censoring my post. I know where I place the blame. I know to whom I would point my finger. And I know where in the system I point the blame. All I can say is that if you watch the Al Jazeera documentary, you'll get an insight into what goes on when a medical system cannot cope.

 

But of course, I needed to know for sure. So I walked to ward 16, praying that the antibiotics that we desperately recommended yesterday would have been started in time to give him a fighting chance to fight the sepsis that had started DAYS earlier. And as I was about to enter the ward, I met the person I would point a finger at, who informed me that he had died late in the evening. It sucks to be right sometimes.

 

I'm seeing big disparities between medicine and pediatrics. I'm glad we're in clinic for the next 3 days.

 

 

PS: if you're a fan of Abraham Verghese, he has a new book coming out and a book tour as well. Not that I've heard him speak, but I bet it would be an inspiring event.

http://www.abrahamverghese.com/

 

Keeping Silent...

 

 

 

 

 

Real Live Bara

A documentary series has been made about Bara. It has started showing. The old episodes can be found on YouTube.

 

Check out:

 

http://www.lefthandfilms.co.za/soweto/synopsis/

http://english.aljazeera.net/programmes/general/2009/01/200919143440701450.html

 

Also, the series is called "Saving Soweto" and if you google that you'll come up with some other articles.

Will I?

 

         Will I?

 

Will I lose my dignity?

Will someone care?

Will I wake tomorrow from this nightmare?
   -RENT 1996

 

I'm at the gym, and listening to RENT. Which isn't ideal gym music, but I was lacking inspiration as I walked into the gym. I've listened to RENT countless times, I know the lyrics, and yet often when listening to it, what ever message I need to hear at that moment seems to ring louder during that time when I listen. It is a profound musical. And when "Will I?" started, I had to stop doing chest presses, and listen.

 

Will I lose my dignity.

Will someone care.

Will I wake tomorrow from this nightmare.

 

Written in 1996, reflecting the emotions of a group of people who were embattled in the fight against HIV/AIDS, poverty, and social ills, it is about the lives of  Bohemians in New York city. 1996. Now 13 years ago. I remember I went through a phase where I read a lot of AIDS literature. And what was striking about the stories then-was the stigma, and the lack of compassion, and the lack dignity during the decline to death. The decline to death.

 

I'm walking down the back corridor of the waiting room today, and I see a familiar face. I see EM. I am slightly confused as to why she is back in the clinic. I saw her yesterday. In fact, I saw her in the evening. She was the last patient of the day, and came into my room at 5:30 pm. To start antiretroviral treatment. When I grabbed her chart, I had a slight sinking feeling. It was late. I was tired. It had been a hectic day, the now usual story of seeing lots of patients, some well, some sick. But to start somebody on treatment that late in the day was slightly irksome. So I called them from the waiting room, and this smallish woman was pushed in a wheelchair by another woman and we headed to the end of the hallway to my exam room. I glance through her notes, she was diagnosed a few months when she was found to have TB in her lungs. Typically, she has something like 60 CD4 cells probably working overtime to try and keep her from succumbing to pathetic opportunistic infections. We talk about the treatment, and I go into my now familiar spiel about how she'll need to, in all likelihood, be on these medications for the rest of her life. It's a way to help me see if a person understands how important it will be to take these medications.

 

"I just want to live."

 

I don't suspect she's at death's door, she may not even be on the right block, but she has this determination in her that strikes me. Did I mention she is 62. Short. And spry. And she just wants to live. She is 62, but looks years past that. She's passed the first hurdle of this visit, which is to indicate that she understands the importance of the medications, and will be ready to start taking the pills. I flip through her past labs on the computer. There is some mild anemia, which is so mild I barely consider it anemia for this population. Everything else looks good. She tells me she is feeling well, except that she has noticed she gets full really easily when eating. If she were a routine clinic patient, I'd likely do the bare minimum examination-look in her mouth for thrush, listen to her lungs if she had a cough, check for sign of anemia. But since she's about to start treatment, I have a sense of responsibility to at least do a bit more on a baseline examination. I help her get onto the examination table, and when she lies flat, I notice her protuberant abdomen-which was masked as she sat in the wheelchair (which she got at the entrance to the hospital because she was too tired to walk the block to clinic). When I get to examining her abdomen, it's rather distended, is full of fluid, and has some dilated veins. Her legs are also swollen. There's a problem. She almost looks like she should have cirrhosis, but nothing to suggest it by her history, and what labs I do have. Does she have TB hiding in her abdomen? Could it be ovarian cancer? 

 

EM is in clinic with her sister. It's approaching 6pm. Nothing will get done at that hour. No labs. No pharmacy. No xray. Nothing. They have taken a mini-bus taxi to get here, and now I'll have to send them home, only to return tomorrow to get new blood tests done, go to the pharmacy, as well as book an abdominal ultrasound, which won't be done for two, or three, possibly even four weeks. They have been waiting since the morning to be seen. They will have to slowly make their way out of the Bara complex, over the bridge to the mini-bus taxi rank, take a taxi home, and return tomorrow to complete these tasks. Don't forget the costs of the taxis.

 

So I see her in the waiting room today.

"EM-are you ok?" I'm worried that somehow she feels worse today.

"Oh doctor, I am good."

"Why are you in the clinic?"

"I just wanted to see if there was anything else I needed to do."

 

I ask about the labs, pharmacy, and ultrasound. Check, check, check. Done.

"Nope, you've done all the things you needed to do."

 

I review, again, how she'll start her medications tomorrow. I remind her to start taking her bactrim prophylaxis today-almost out of anxiety on my part hoping that ward off any infection before her immune system recovers.

 

And she reminds me, "I just want to live."

 

I see a very pleasant 30 year old woman today who has been on treatment for 215 weeks. A long time. She is on the starting regimen. There are only 2 regimens. I glance briefly at her last few notes. They have been uncomplicated visits. She is a pro. She does well with her treatment. It'll be a routine visit. I go through the standard questions. I ask how she is feeling, if there are any new problems. I consider not even asking if she has missed any pills, I mean, she's been taking these pills for longer than I have been a doctor, and her CD4 and viral load are where they should be. But I ask.

 

"Doctor, I don't always take my efavirenz at night."

 

And admittedly, this catches me a bit off guard. People who have compliance/adherence issues, or who have defaulted treatment in the past carries these labels with them on their charts, and I glance again at her last note to review compliance. This woman is bright, and articulate, and has volunteered this openly and honestly. It turns out, this isn't new, and in fact she has been skipping efavirenz doses at night for more than a year now. I wonder why it is, that this is the moment she has chosen to disclose, not that I ask, because I want to encourage her to feel she can disclose these things in the clinic. It turns out she can no longer tolerate the nightmares she has from taking the efavirenz. This is a known side effect of the medication. She has reached a point where she knows that not taking it regularly is going to have consequences for developing resistance. I ask a little to clarify, if these are dreams, or nightmares. It's purely out of my own curiosity. Some antimalarials give dreams, as I experienced in Zimbabwe, and I loved the 6 months of vivid, colorful dreams I had when I was on treatment for TB. But had they been nightmares, I likely wouldn't have been as keen to keep taking the pills for 6 months. And she's been taking them for years. Perhaps she has been worried about how we, the clinic, would react to this disclosure, and that is why she has kept this to herself. Her options are tough... But we come up with possible plans to deal with this issue, and she'll come back to us with her choice...

 

Clinic finishes at a decent time today-and I have 3 consults to do, and I also want to check up on the other patients I'm seeing on the wards. I decided to pop in and see the guy with infective endocarditis, who is doing great and should be heading out of the hospital soon. As I walk down the ward, I look at the patients lying in bed. I look at the faces. Confused men, lying naked in bed. A man trying to get a cup to his lips, struggling, and spilling water over him. I head to see my patient. After 3 plus weeks, he's bored, we chat for a bit. I write a brief note in his chart. When I look up, I recognize the guy in the bed next to him. It's the guy I admitted this morning.

 

"Doctor" is the patient's first name. Not an all too uncommon name. He showed up at 8am this morning, I handed him his admission papers, and sent him to get an xray and then head over to the admission ward. I checked a few hours later to see if there were any labs on the computer, as a surrogate measure of if he had maybe been seen yet. No results. I hoped that he wouldn't sit for hours waiting to bed admitted. And here he was. He smiled, and we talked a bit. I looked over the admissions orders that the registrar had written. Doctor had a biopsy of an abdominal mass weeks ago, was told he had non-Hodgkin's lymphoma, and needed to follow up with the hematologists. When I saw him yesterday, I wasn't even sure if he knew he had cancer. I imagined the conversation when he got his results went something like this.

 

"Well, your biopsy results show you have non-Hodgkin's lymphoma, we'll send you to the hematologists good luck and take care."

 

Yesterday, after weeks, he hadn't been to the hematologists, and the work up that should have been started wasn't anywhere close to being done, or even started. Doctor is about my age. But looks at least 10 years older, though I have more grey hair. The striking thing is how wasted his face is. You can literally imagine what his skull bones look like, because he basically has a thin shell of skin covering them. He was in the office yesterday, with his girlfriend, and their infant (maybe 6 or 7 months old). You can see the fear in this guy's eyes. He has no immune system. He has cancer. He knows this. Yet, like EM, you can see he desperately wants to live.

 

Will I lose my dignity?

Will someone care?

Will I wake tomorrow from this nightmare?

 

As I'm lost in a moment of vanity at the gym, I hear these lyrics, and these are the faces and stories that immediately came to mind. Dignity. Care. Nightmare (both literal and figurative). How is it that lyrics written about this damn disease 13 years ago in America still perfectly capture what is going on today in other parts of the world.

 

-

Inauguration and ID

I went to an inauguration party last night. Must have been close to 75 people there. A mini UN of people. And it was wonderful. You could feel the excitement that the world shares in this change of leadership of the country. Seeing non-Americans get sentimental at the swearing of President Obama was very moving.

 

As for ID-

Whoa. Man these Wednesday clinic are killer. Non-stop from 8am to 6:30pm. I'm quite frankly exhausted. There are things I want to say, but honestly it's so late that I think about all I can do is pop into the gym, have dinner, read up on one topic briefly, and then crash.  I've never seen people so ill. Today I could have admitted 3 patients, but instead will admit one tomorrow (so he could take his wife and infant home, get his HIV medications from home, and will return tomorrow to be admitted for the rest of his lymphoma work up), and am going to try and work up the other as outpatients. What I do kind of enjoy, is that I'm also working up pretty significant hypertension in a young woman, as well as abdominal swellings in 53 year old woman whom I started on HIV treatment today. I also tried to convince a 66 year old man with schizophrenia (well controlled on meds, you'd never know he had schizophrenia if you met him on the street) to start treatment, especially since his CD4 count is hovering at 41. He's thinking about it for a week or so.

 

I find myself telling people to hang in there, that they are going to get stronger and feel better. And every time I say this, I have flashback to KR (the child who died after telling his family he would get better), I scold myself to not say these things again. And because, quite frankly, I don't know if they will get stronger or feel better. That's what I certainly hope will happen, but those who are already emaciated, have no immune system, and barely have faith themselves, are already behind the 8-ball...

 

That's it. For now.

 

 

Parallels

I walk into the clinic at 7:45 this morning. The waiting room is full. It is already warm in the room as well. And muggy. I know that within a few hours it will be hot in this room, yet the people will continue waiting until they are seen. I left at 6pm Wednesday night. There were 250 patients registered to be seen. There were 5 of us working all day, with one or two others popping in when they could, to help out. When I left yesterday, I went home, walked down the street to have a beer and dinner, and had to just sit and watch the sunset to let my mind unwind.

 

But it is a new day, and I'm ready. I've set a goal to be more efficient today. I call the first patient to be seen. Mr. AN.

 

A man stands up. He looks no different than many in the room. Aged. He looks fifty plus, but looking at his date of birth, I see he is actually 40. We walk to the end of the corridor, and enter my exam room. I glance over his details.

 

Week # 48 of ARV (anti-retrovirals, aka HIV treatment). Doing well. His viral load was not detected 3 months ago, and his CD4 count is around 300. No other real medical issues that will have to be dealt with. I look over his clinic note from 3 months ago, and he's compliant with meds (as expected given his undetectable viral load, and decent CD4 count). I breathe a mini sigh of relief, first patient of the day will be out of my office in 5 minutes. I go through the standard questions. Have you been hospitalized? Have you been started on TB treatment? Have you missed any of your medicines? No, No, No. Is anything wrong? No. Perfect.

 

I look at his vital signs. No Problem.

I look at his weight. Problem.

 

We're using a simple bathroom scale, the kind that you may buy at Target, or any store. It's not all that accurate. But AN's weight is down 5 Kgs since his last visit. About 11 pounds. Where is the problem??

 

I worry about hyperlactateaemia. A complication of HIV treatment. Asymptomatic elevation of blood lactate levels. The only sign may be weight loss. Possibly some abdominal pain as well. He is feeling fine though. I can only really rule this out by doing a blood lactate level. I tick the box on the lab form.

 

I worry about TB. He doesn't have a cough, or fever, or night sweats. He had TB in the past, but that was years ago, and he's far out of the risk of IRIS. And he has a decent CD4. He shouldn't have TB. A chest xray would likely be pointless (but I'll get one anyway), and no chance of getting sputum because he isn't coughing.

 

I worry that maybe he's too embarrassed to admit to having chronic diarrhea. So I reword my questioning, but he's consistent. "Doctor, the caca is fine."

 

I worry that his liver has taken a hit from the HIV medications. But he tells me he has a good appetite. He's already denied abdominal pain. He hasn't been jaundiced.

 

I wonder if he has hyperthyroidism. But his heart rate is normal, and no other real stigmata of thyroid disease.

 

There is a problem. He has lost a significant amount of weight, and I can't forgo finding out why. I'll throw out some target screening labs, in addition to the lactate, I'll check his thyroid, his liver, his blood count as well as his renal function. Maybe he needs an ultrasound of his abdomen too?

 

We talk about these possibilities. I write up his note, and his lab forms, and his xray form.

 

"Doctor, I take my pills on an empty stomach."

"Well, that's fine," I say, "but luckily the pills you are taking can be taken on an empty stomach, or with food."

 

I go back to writing. As I'm writing, he grabs some papers out of his bag, and I recognize the familiar disability grant paperwork. And the light bulb goes off. I've made such a gross assumption, that I'm quite embarrassed

 

"Is there a reason you take your pills on an empty stomach?"

"Doctor, I'm not working, I don't have food."

 

Is it possible that the reason he's lost weight is because he doesn't have food. Is the simplest explanation the most likely?

 

I take the disability paperwork. All of a sudden I have a flashback to the resident clinic back home, and the sinking feeling of getting those fat envelopes in the mailbox when somebody wants disability, when in fact, there is no disability, but rather poverty and poor social circumstances. Today, I filled out 5 disability forms. For 5 people who all are unemployed, some supporting 3 kids, but none of them qualifying for disability. I didn't know what to do in these circumstances, so I filled out the forms, and told the patients that they wouldn't qualify. Perhaps I (grudgingly) filled out the forms to make me feel better, but knowing that they were only going to waste time and effort for these patients, as well as "the system."

 

After clinic, talked to the clinic attending, Dr K, and asked about what to do in these situations, when somebody wants disability, but won't quality... We talked about the breakdown in "the system" and what to do...

 

I see AN in 2 weeks.

 

Cholera (aka: The world is f*cked up)

We had our grand round today-both the infectious disease team and the microbiology staff. We went to see a patient, who may well be the first cholera case at Bara, related to the outbreak in Zimbabwe. There have been plenty of cases up in the northern region of South Africa-the Limpopo area which borders Zimbabwe. And there have been a smattering of cases at Jo'burg hospitals (JHB General and HJH), but none at Bara. Which seems a bit unusual... But the cases at the Gen and HJH have been patients who were seen in the MSF (Doctors w/o Borders) clinic in the heart of Jo'burg, and they refer patients to the Gen.

 

So, it was a great bedside (well, not at the bedside, since the voluminous diarrhea makes it somewhat distracting to talk at the bedside) tutorial on Cholera. In addition to all the stuff that would bore most people (pathogenesis, treatments etc) we also looked at the Zim statistics.

 

Consider this:

-only 10% of people with Cholera are symptomatic. There are a reported 30,000 cases of cholera. Which means that that the actual number of cases, based on the reported 30,000 is therefore 300,000 cases. Take into consideration that Zim is falling apart, that there is poor disease reporting, and that people are likely not accessing health care, and the figure of 30,000 reported cases is likely a GROSS under-reporting.

-that the expected death rate of cholera is 1%. It doesn't take any special, drastic measures to treat. Simply rehydration alone, and antibiotics for those severely ill. But, the overall death rate in Zim right now is 5%. BUT the death rate in the community (i.e., those not in treatment centers) is estimated to be 55%, of those who have been diagnosed.

 

I say that this is "aka the world is f*cked up," because there is plenty of bad news in the media these days. (Though I have to admit that I spend less time on my favorite news sources-the BBC and NY Times, and simply look at major headlines to see what new f*cked up problems there are). The Economy. That guy who stole all the money. Gaza. Iraq. Pakistan. Iran. The US. Unemployment. Somali Pirates. Jacob Zuma. The Denver Broncos.

 

But this is f*cked up:

"healthcare" in Zimbabwe-as per BBC

Cholera: 2,204 died since August

Anthrax: Eight deaths since November

HIV/Aids: Estimated 400 deaths a day

TB: Brain-drain has practically closed the national testing laboratory which now has only one staff member

Maternal mortality: Risen from 168 per 100,000 in 1990 to 1,100 in 2005

 

(Please read the full article at http://news.bbc.co.uk/2/hi/africa/7826304.stm and also check out http://physiciansforhumanrights.org ).

 

So, our one patient with probable cholera will have an uneventful course at Bara. He'll get his hydration, and antibiotics, and he'll head home in a few days. But had he been in Zimbabwe, there's a good chance he could have been #2,205...