More on Gender

Two unrelated stories to make me reflect further on gender in Zambia.

Story #1
This story also makes me reflect on myself, on how trusting I am, or how much I choose to see the good in people, because my reaction to a patient and reaction of Dr. Jack were very different.

I saw a patient on Wednesday. A man in his 40s, on ARVs for several years now. Has been doing fairly well, says he is adherent to his medications (but everyone always does). On this visit, we noted a largish drop in his CD4 count, not quite significant enough to consider assessing him for treatment failure, but it was a drop. But on exam he looked fine, he hadn’t had any recent illnesses or infections. I asked him if he was married, and then I asked if his wife has been tested, and here is the story he tells me.

Yes, she was tested in 2005 at UTH (University Teaching Hosptial) when she was pregnant, and the test was negative, but I don’t believe it. How could she be negative after all that time we were together?

So my initial thought about this statement was, he was worried about her. He really did feel she should recheck, that it could be a false negative, that since he’s infected it would be likely she is too. When I asked if he had suggested she test again, he said it wasn’t his place. Then he asked me this:

From 1991 until 2001, I was completely abstinent. Since that time, I have only had unprotected sex with my wife. Is it possible I could have been infected as long ago as 1991?

Again, my first thought about this statement was that he was really trying to figure out if his wife could really be positive and not getting treated. And I went into an explanation of the evolution of an HIV infection, and how it’s perfectly possible that he was infected back then, and he could have been healthy all this time as his CD4 count slowly went down.

So then Dr. Jack comes in, notes the large drop in CD4 count, immediately starts probing about how adherent to his medication the man really is. That’s Dr. Jack’s big thing, your CD4 drops, you’re having adherence issues. So he starts asking him about the situation at home, if there’s trouble with his wife, if he’s depressed. What Dr. Jack picks up on right away, and I did not at all, is that this man isn’t asking these questions because he’s worried about his wife, he’s asking because he’s blaming her. He thinks it’s her fault, that she really is positive and she infected him. It’s all about the blame game. Dr. Jack shares a story about another patient of his, a girl who got raped when she was 13, got a baby out of it, and then never had sex again (and he believes her). And 26 years later is when she was diagnosed with HIV because of multiple AIDS related infections. That is way above the upper limit of normal for how long it can take to develop AIDS, but it’s possible. For this man, 10 years is higher, but by no means uncommon.

The man started getting a bit uncomfortable and clearly didn’t want to be there anymore, kept looking at his phone, at his watch. He left as quickly as he could.
But there it is, I hear it all time, about men who refuse to get an HIV test, even when their wives come home from the pre-natal clinic found to be HIV+, even when their little newborns get diagnosed with HIV, these men blame their wives and do not think it could be themselves.

I’d like to acknowledge the fact that it could be his wife, maybe it was a false negative test and she did get HIV first. By no means am I saying it’s always the men. But if often is. And if they refuse to be equal partners in testing and prevention, if we can’t get beyond the figure pointing to the point of, well, we’re infected, what can we do about this now? we will never curb this HIV crisis.

Story #2
I went out to lunch yesterday with my supervisor Steph and Julian, one of the nurses who works with us at CIDRZ. We are the OPD-ART integration team, and we thought it would be nice to have a lunch together to acknowledge all the progress we’ve made over the last year. Over the course of the conversation, Steph asked Julian how she had met her husband, and she proceeded to tell us a wonderful story of serendipity.

Julian had been a nursing student at a hospital in the Copperbelt and her (future) husband had been a Ministry of Health official, visiting the hospital and met Julian because he stopped her in the hallway to ask for directions to an office. He had been enchanted with her, and later found her again to thank her. After that encounter, he wrote her a couple of letters, but she wasn’t really sure how to respond and she didn’t.
Two years later, she had graduated, and moved to hospital up in Northern Province. He had just taken a job there too, in the MoH office, although neither of them knew about the presence of the other. One day, he saw her name on a roster, and wondered if it was the same Julian. He asked that she be called in to the office to see him.
So there she is, working at the hospital and gets a message that she’s been summoned to the district health office to see the Director of such and such (but no name) and she has no idea why. She figures it’s because she’s getting fired. She said it was a long walk over to the office. Then when she told the secretary she had an appointment, the secretary asked why, and Julian said she didn’t know, and the secretary thought there must be some mistake, because why would such an (unimportant) woman be told to meet the Director of such and such if she didn’t even know why. But the appointment was confirmed and Julian was shown into his office, while he wasn’t there, to sit and contemplate her impending job loss.

Then he walked in, and smiled, and said, “Ahh, it’s you!”

She was definitely in shock at first, and didn’t know what to say, and felt bad for not returning his letters. But sounds like she got over it, because after 6 months of dating they got engaged.

I tell this story because it’s so cute, but the gender part relates to a statement Julian made after telling the story.

She said, “I really thank God for giving me such a truly good man. He loves me and he loves our children, and he supports us, and he helps take care of the children and the house, and I feel so lucky for such a good man.”

At first, hers statement made me a little sad, the fact that it meant so much to her implied to me that it’s not the norm here, and I’ve certainly observed that. Even some of the upper-middle class Zambian women I’ve met here tell me about how their husbands will come home from work, kick up their feet, read the paper, and expect their wives to do it all, they won’t lift a finger at home.

But then her statement also made me think about the way things are at home. Some of these things have become a given, at least in some parts of the country, men are expected to do these things-house cleaning, child care- and when they don’t, their wives get upset. Should they be so upset? Should they be more thankful, or at least, acknowledging of the help their husbands offer at home? Would more marriages be healthy and strong, from just those simple acknowledgments?

How different, really, are gender roles here and in the US?

Weeks'-End-Update and a Word about Food

It already feels like ages since that last uplifting entry and yet the weeks have flown by lightning fast, I can’t believe it’s already Friday again. But it’s all been rushing forward towards big things.
Next week is big, for both of my projects.

Monday is ART-OPD integration at clinic number 3, in a neighborhood called Chazanga. It's hard to believe it all happened so quickly. When I first got here in July, they had spent 9 months preparing to integrate the first clinic, Ng’ombe. Chazanga we planned from start to finish in less than 3 months. Something that makes this clinic unique is that they don’t yet have an ART program. ART will be starting next week as well. So not only are they initiating ART, but it is beginning as a fully integrated clinic, with ART just part of the outpatient department. It will be nice because we don't have to rework any of the established systems in the clinic, but it will be more challenging for the staff I think because they will just be learning how to work in an ART clinic. It's nice for the patients, because until now, they haven't had ART in their neighborhood clinic, and they've had to travel to other health centers to get their ARVs. Now it'll be close to home, and I think we're going to have a lot more people testing for HIV, since we've made (opt out) testing a standard part of any clinic visit.


My peer educator program evaluation moved along nicely as well. The interviews are complete. Let me tell you, it was a royal pain in the butt coordinating availability of my staff, who were conducting the interviews, with availability of the clinic staff to be interviewed, with availability of transport to get them there. But somehow (with a few extra visits to the clinics, why did we have to choose the furthest away clinics for our program) we managed to interview everyone we intended to.
Next week we're hosting officials from the local Ministry of Health, doing a site visit with them so they can see what the peer educators are doing, and then presenting them with the data we've collected. Overall there's been a very positive response to the program, from staff and from patients. And the concern that the people who volunteer at TB corner would be resentful of our peers getting paid to work at TB corner was somewhat founded, but doesn't seem to be too harmful overall. Everyone here is always looking for "motivation," incentives, snacks, transport allowances. I think the only thing holding us back from expanding this peer program will be available funding. I think our CDC funding is much tighter this year. Looks like if the MoH says yes, we will be able to continue the current peers at least for the coming year, but expanding it to other clinics looks uncertain. I’ll know on Wednesday if I can call this project a success.

Wednesdays have become my clinic days, and it's been really awesome. I've been going long enough now that I'm even getting to see some patients who return for follow ups. Yesterday I saw the little 8 year old girl who I first saw a month ago for her initial history and physical. If you look back to my January entries, you can read all about what a bad condition she was in at the time.
Right after I saw her in January, she was initiated on anti TB therapy and given various antibiotics and antifungals for her opportunistic infections. She definitely looked better yesterday than the last time I saw her! For kids we do CD4%age instead of absolute CD4 count. Her %age was, get this, 0.4%! Anything under 25% is considered getting low. Her CD4 count was essentially nothing. We initiated her on ARVs yesterday, it was really interesting for me to see how we go about doing that, choosing which drugs and which doses, based on her co-infections and other medications. Concurrent ARVS and TB treatment can be tricky. Of course just this morning I read an article about IRIS, immune reconstitution inflammatory syndrome, a serious condition patients can get after initiating ARVs while already on TB treatment. Now I keep thinking of her and hope I don’t see her in a few weeks time with that too. It's hard to see kids like that, but I really enjoy the overall experience too, the medicine, the interaction, the support, the learning.
I have to say though, working in an HIV clinic makes is not helping me remember my non-infectious disease stuff. I saw another patient a few weeks back, a friend of someone at the clinic who just needed to be seen for malaria like symptoms, HIV negative. Long story short, I totally wanted to work her up for SLE (lupus) after talking to her for a long time. But sadly, a simple ANA is hard to get and very expensive too. And it wouldn't have been worth it for her, she's not doing all that badly. And then who would manage it? Maybe for me it would just have been the thrill of making that kind of diagnosis, in a place where usually people never know they have those types of conditions.
It’s going to be another busy weekend as usual. 8 mile run. The return of Stitch n’ Bitch Lusaka, first one for 2009. Birthday party for one of our friends, with Thai lady catering. Sadly, the boat shipment did not come in, and there will be no Pad Thai due to the lack of noodles.
Curious what food items are available and not available, and when. I shouldn’t complain. Before I got here, I expected no availability whatsoever. I pictured myself eating onions, tomatoes, eggplant and carrots all year. But once I’ve been given the opportunity to buy an item here, it makes me sad when I can’t.

Cilantro
Red chili paste
Couscous
Balsamic vinegar
Granola
Chickpeas
Celery
Canned diced tomatoes
Tahini
Sweet corn

Usually when they’re out of a particular item, they’re really out of it. Like a totally empty shelf, you reach all the way up to see if maybe one is left all the way at the back and come back with a dirty hand, and no more in for weeks. I don’t think I’ve ever made a grocery trip without not being able to find at least two of the items on my list, items that are usually there. We like to come home saying, “Gosh, there’s a run on lentils and popcorn this week!” This week I really wanted parsnips, and they actually almost always have them. But they tried to be sneaky, they put Chinese turnips on the shelf instead, long and white and root looking yes, but not really the same thing at all. Celery is just luck of the draw. Zambians don’t really do celery. But they know mzungus like it. Sometimes they only have little milk cartons instead of big ones, or small trays of eggs instead of large ones, or only instant coffee, or no instant coffee. Good thing there hasn’t been a run on toilet paper yet.

Once a mzungu, always a mzungu

Until yesterday, it had been a week of contentment, comfort, ease. It had been a week where I felt I’ve been here for a long time, where I felt I almost belonged, where at the very least, I knew how things worked, it was okay, I knew how to deal with it all, in a positive way even. Contentment until yesterday evening, where all my worst impressions of Zambians and Africa just got reinforced ten fold, and left me feeling shaky and shitty, even now, hours later.

Went out to dinner with a friend at this Ethiopian restaurant that we really enjoyed the last time we went. Here’s how the conversation with our waiter goes.

US: We’d like the combination platter. Do we get to choose which dishes we get in the combination?
HIM: Yes
US: Okay, we’d like a, b and c.
HIM: Okay, you want a, b and c.
US: Yes
HIM: Coming right up

….Dinner, conversation, yummyness. Then the bill. It’s way more than we expected it to be. What’s going on?

They charged us for three individual entrees, as opposed to the combination platter which comes with three varieties. The ensuing argument goes on for about 20 minutes, getting involved two night managers, the cook and our waiter. Nobody seems to be hearing us, what we’re saying, and the waiter doesn’t own up to exactly what was said. Nobody seems to acknowledge the misunderstanding. They keep telling us, but you chose three dishes, and you ate three dishes, we can show you the order than went into the cook. And we say, but he told us we could choose which ones we wanted in the combination, and they say, but you chose this one this one and this one.

And then, in the way I hate so much, they play the guilt card.

LADY IN CHARGE: Well who’s going to pay for this? I’m tired of paying for customers, I won’t do it anymore. And your waiter, are you going to take the money from him? He has worked all day. Just pay the bill. Who else is going to pay it? The money has to be there in the morning. Just pay the bill!

Yup Sarah, there she goes again, the rich selfish mzungu, trying to take advantage, doesn’t want to pay her bill, making a big deal, trying to make them pay, isn’t that typical of those whites. She’s white, she has plenty of money, why is she making a big deal out of this. Stupid mzungu, didn’t she realize what she was eating?

Nobody will let us call the real manager. It’s late. My friend is frustrated, she’s raising her voice, cursing. The lady in charge gets insulted and really stops listening. My friend is living on a very tight budget this year, essentially making a Zambian salary, and wasn’t expecting to pay this much for dinner. And the more they refuse to listen, the angrier she gets. I’m trying to remain calm, speak nicely to the lady, see if we can clarify what the other is saying, she won’t even let me talk. I want to scream, but I don’t. Finally, I just want to leave all the money and get out of there. My friend keeps saying we’re not paying. I don’t want this argument to continue. I never make a big deal out of these things. But the principle of it infuriates me.

At home, it would have been a conversation with a manager, a restaurant error, and correction. It’s the cost of doing business. But because it’s Zambia, and it’s late, and the manager isn’t there, nobody present is allowed to make the call, “yup, that was an error, let them pay what they thought they were paying for, we write it off as the cost of doing business.” Nobody was there to say that. So any money we didn’t pay would have come off somebody else’s paycheck. And thus they were (almost) legitimately mad at us, and yelling at us to “just pay!”

Of course I don’t want someone else to have to pay for the error. As always, they guilted me into paying. But the fact that there was no mechanism to account for that kind of error is ludicrous.

The worst part for me though, the image I cannot get out of my head, is an older Zambian gentleman who was sitting at a table near the register, listening to this whole argument, starting at us, with this subtle smirk on his face that kept getting bigger and bigger. My phone rings, it’s the taxi driver telling me he’s waiting for us outside. I hang up. The man looks at me, large smirk on his face now, and he says,
“Look at you, spending all that money on your phone!”
I want to punch him, scream at him, cry all at the same time. I’m shocked, I’m outraged. I’m speechless. Forget about the fact that when somebody calls you, it doesn’t cost you anything. In his mind, I am the selfish mzungu, taking advantage, always taking advantage, thinking I can get away with it. Why won’t I just pay, I have the money.
All I can manage to say, all I can think to say is,
“Where do you get off judging me?” I probably look like I’m about to cry because that’s how I feel. And he just keep smiling, in fact, I think his smile got bigger.

All of this happened after a dinner conversation we had had about the lack of regard for others and lack of personal responsibility that’s so pervasive here. In manifests itself in all aspects of life.

-Walking down the street and people not letting you by, especially on our morning runs when clearly we’re running and want to keep running. Just because, why should they move to let you by?
-The garbage strewn all over every free patch of space on the street, tossed carelessly from cars, from hands, as if it magically disappears after.
-Cars and buses driving by where pedestrians are non-entities, they would rather run you over than slow down and in fact will give you dirty looks if you try to cross. You know how usually, you cross the street and wave at the person in the car waiting for you, as a courtesy, as a thanks? Here, the driver will wave at you, as you’re standing there in the middle of the crosswalk. Thanks for waiting!
-In line anywhere, waiting for anything, or should I say, lack of lines.
-At work, where leisure time, leave time, tea break and knocking off early rule over all, and actually working is just an after thought.
-In almost anybody starting up a conversation with you, because they always want something else. The ultimate goal-A marriage proposal and ticket to America.
-By the constant blame game. Our day and night guards stabbing each other in the back in who’s fault it is that some thing happened. Never ever admitting fault, or saying I’m sorry, especially to a woman.
-In the perception that they will be handed everything they need, largely by all the aid money pouring in. What have you brought us this morning Sarah?

Those are feelings I try not to dwell on. When I do my work here each day, I try to focus on all the things I like about Zambians, and all the promise this country holds.

But I have to admit that I’m having a hard time feeling positive about any of it right now. When Zambians ask me if I like it here, what I like best about it, it’s getting harder and harder for me to list the positives. The sense of entitlement infuriates me. Payback for centuries of mistreatment at the hand of the white man. That’s why I’m here apparently, to give them what they deserve after all this time. Why else would I be here? I will never be seen as someone trying to defy the stereotype, to put history in the past, to start anew, as here because I want to help, even in my own small way. It’s too late for that. The stereotype will never be broken.

I hate when Zambians make me hate them. But as far as I’m concerned, Zambia, and Africa, is going to shit.

Inauguration Day in Lusaka

…Huddled around radios in the forgotten corners of the earth…

Indeed, we huddled, 2 ½ months later, around CNN international projected from the TV onto the wall, and there were more than 30 of us, and there was a potluck, and we all sat, on couches, cushions and floors, and some stood, and we cheered, and cried, and shared the historic moment, so that we’ll always remember, when somebody asks us in the future, where were you on that day, we can say, I was in Lusaka, Zambia, in a house on Martin Luther King Rd., watching with 30 of my closest American and non-American (Canadian, Australian, Dutch, British) friends.

In honor of the occasion, I made a cake and I think he liked it! (see above)

In the taxi on the way home, they were playing over the inauguration speech on the radio, and the next day, all the Zambians were asking if I had watched. They love him here. They fight over Obama shirts. They have pictures of him on their desks at work, next to the family photos, cousin Obama.

TIA (this is Africa)

In the two weeks since I’ve gotten back from Cape Town, time has flown. Unlike the last time I arrived in Lusaka, in July, when everything was fresh and new and everything took adjusting to, this time it was like coming home after a vacation and all the good and bad that entails. It was both unwelcoming and comforting to slip back into the well developed routine-the early morning runs, daily greetings at the office, navigating transport arrangements and refreshment orders at work, evenings of cooking dinners, watching movies, reading, blogging, chatting and of course, weekend get togethers. I wasn’t so excited to get back to the crowds of Lusaka, the traffic, the exhaust, the burning garbage and always being on the defensive. But it felt good to get back to work starting from the place I had paused, rather than starting anew.

When I first arrived in Lusaka, each week was an achievement, another week here, another week toward some mark, one month, two months. Yesterday marked six months here, but I almost forgot it.

The first Monday back, there was already so much going on. The OPD/ART integration at Chazanga clinic is less than 30 days away. Matero Main Clinic will not be far behind. It’s amazing to think that nine months of planning went into integrating at Ng’ombe, the first clinic, and Chazanga will take us less than three. The really interesting part will probably be the information we gather from long term monitoring. More than a year’s worth of data about patient HIV testing, ART enrollment, overall numbers of clinic visits and patient waiting times will tell us a lot about the wider applicability of this integrated system. But for now, we plan, we implement, and we monitor.

The peer educator program at Chipata and George is headed towards the end of its pilot period. The September training feels like it just happened, but now they’re done with four and a half months. My (somewhat) daunting task is to complete an evaluation of that program in the next month. That way, by the official end of the program on February 28^th, we will have an answer for them as to whether or not we can renew their contracts. It’s our program, but the ministry of health has to give the okay, and if they say the program goes, then it goes. From the way things look now, if the program does get stopped, it seems that it will be entirely a funding issue. They don’t want to continue programs that they will be expected to fund down the road.

That highlights the dynamic relationship between Zambian government funding of health programs and outside funding. There is a staggering amount of outside money coming into this country for health, specifically for HIV. If you look the annual national spending on health, about 10% of that comes from the Zambian government. The rest is outside funding, like PEPFAR and Global Fund money, most of which is directed at HIV. HIV treatment has massively dwarfed everything else, and while it’s great to have so many people being treated, the health infrastructure here was weak to begin with and has been strained even more so since PEPFAR.

So while the ministry of health is happy to have programs like peer educators working with TB-HIV patients, I don’t know how much hope there is for them ever funding it themselves. But I’m going to try and get them to agree, to at least let us continue this program for now.

I made a stop at George Clinic last week to pick up somebody on the way to somewhere else, and I ran into one of the TB-HIV peers. She’s the one I feel the most conflicted about, she’s the one I like a lot, but who takes advantage of me as much as she can, by telling me how poor and destitute her family is. The first thing she says to me after greeting me is, “Sarah, what have you brought us today?” There are so many snide, rude, angry, sarcastic things I want to say to her, because she never stops. Of course I don’t actually say those things, and I just have to smile and joke it away and say I don’t have anything for them.

I wonder if it would matter to her to know how hard I’m working to keep her current job, how even if the peer educator program doesn’t continue, I’m working on getting another job for all four of them within CIDRZ. Would that change her attitude toward me? Would it ever be enough? Or would she continue the emotional blackmail. She is poor and I am white (=rich) so therefore she is entitled to everything I have.

Working at an NGO has made me a bit bitter. It’s highlighted that very tricky, shady border between getting programs started and sustainability, and I think I might be losing faith that the sustainability part ever really happens. Not just in health, but in other areas as well.

Last night, as I was driving with a friend over a very rough, pot-holy road, in a nice neighborhood, that clearly hasn’t been repaired since it was built, I was reminded of one of my most vivid memories from Tanzania. I was with Johanna and Alea in the coastal city of Lindi. This is still a beautiful town in many ways, built along a sheltered bay on the Indian Ocean. It used to be the German administrative town, and there are many old, very solidly built buildings that were built and run by the Germans until they were handed over to Tanzania at independence. But rather than use and maintain these buildings they already had, they let them fall into disrepair. If you walk the streets of Lindi today, you will pass by big, solid, crumbling buildings, with newer, thatch roofed huts dispersed between them.

Somehow this turned into another sustainability rant, although I didn’t mean it to be so. But I think it highlights how every day here is a swing of emotions, between the satisfaction of accomplishment, the wonder and appreciation of another culture, and the stress and frustration at how things work here. But as they say, for all the good and the bad, TIA.

Some more memorable patients

Each week I go to Kara Clinic, I see at least one patient who stays in my memory. Sometimes it’s a patient’s story, others it’s a demeanor, a mood, a facial expression, sometimes it’s a medical condition, and sometimes it’s all of those.

Last week I saw a little girl, let’s call her Violet, brought in by a young, professionally dressed woman who turned out to be her aunt. Violet was 8 years old, though she looked younger. She was scrawny and slight, but it was hard to tell exactly how much so because she was wrapped in many layers of sweaters, jackets and a warm winter cap. She said not a word the entire time, but was clearly very aware of it all, for she responded to questions with a nod or shake of her head.

In bits a pieces, through cryptic words from the aunt, and what was written on Violet’s chart, we determined that this little girl was newly diagnosed with HIV and was there for her initial enrollment H & P. Both of her parents were recently “late.” The aunt made it quite clear that Violet did not yet know her own status, and so it was not okay for us to say “HIV” out loud.

But at age 8, sick as she was, with two dead parents, how could she not know?

During the physical exam, there is a checklist of systems to go through, body parts to examine. During most of my exams that I’ve done at the clinic, there will be one, perhaps two, abnormal findings. The rest get ticked in the column on the left “normal, normal, normal.” Violet’s “abnormals” far outnumbered her normals. She had tinea (ringworm) on her face, head, body and extremities. She had a chronic ear infection draining pus. She had a thick patch of candida growing on the tip of her tongue. The undersides of her eyelids were a pale white, a sign of severe anemia. I could feel her enlarged liver on my abdominal exam. She had crackles in her lungs.

As I sought to examine each system, she dutifully and quietly followed my directions. Open your mouth. Take a deep breath. Lay down on your back. Squeeze my fingers as tight as you can. With each, I made an unexpected and unwanted discovery. Each was a reminder of the awful virus ravaging her body.

All I could keep thinking was that she had not been told. In many ways, I understand how hard it must be to have that conversation with an 8-year-old girl. This was a new diagnosis, she had not yet been started on her ARVs, and so it was all rather new. But it’s a conversation that must be had soon. I kept looking at her young aunt, who looked scared, worried, sad and stressed. I would not wish that position on anybody and I know she’s going to need all the help she can get.

I’ve heard about children here who have been taking their ARVs for years, for as long as they can remember, and have never been told why. Surely the damage from not understanding their illness, being lied to about their illness, is worse than the struggle of learning to live with it?

CIDRZ has pediatric peer educators and pediatric support groups that attempt to address all these issues and lend support to both the children and their caregivers. These are issues children should never have to deal with. This is yet another consequence of this epidemic: an entire generation of children forced to accept HIV as part of them, to have never known life without it.

Last week my patient was memorable for her symptoms. Last week I found myself being that student (or intern or doctor) who gets excited about pathology for learning’s sake. Surely we don’t wish uncommon pathology on people, or any pathology for that matter. But there it was, playing out in front of me and it’s kind of thing I’ll always remember, “back when I was in Zambia, I saw that women with the…” Maybe I’ll see it again in the future and recognize it because of her.

When I entered the room, a middle aged woman sat in a wheel chair, blankets piled thick on her lap and around her legs, disheveled hair, a far off gaze, and distinct but faint urine nursing home smell. She was accompanied by a sister and nephew. This woman, I learned from the PA, had had HIV for many years and had struggled with adherence to her medication. She had documented in her chart long stretches of time when she had not returned for follow up visits and medication pick up. Clearly this doesn’t lend itself so well to successful treatment. She had come in on this visit because over the period of several weeks, she had a steady and progressive paralysis of her body. It started in her feet and had now reached all the way to her abdomen. She had lost all sensation in those same areas. She had also become incontinent of urine, but had not had a bowel movement for three weeks.

It was her sister who did most of the talking. While the patient could talk, she didn’t seem much in the mood. I’m not sure I would be in the mood to talk about adherence either if I had very quickly lost use of and control over half of my body.

I reached down to that file cabinet of physical exam knowledge in my brain that hasn’t been used much in several months and opened the drawer for the neuro exam. But there it all was, ready to go, sensation, motor, reflexes, dermatome by dermatome, nerve by nerve. And I have to admit, although perhaps a bit gruesome sounding, it was very interesting to palpate the abdomen of somebody who had not had a bowel movement for 21 days.

There are many things that can cause those types of neurological symptoms in an AIDS patient. We sent her over to UTH, the teaching hospital, for admission. But it’s certainly the most advanced AIDS-related neurological syndrome that I’ve gotten to see myself.

By the end of the visit, we had her talking a bit more and I think she might have even smiled a little when I wished her well and said goodbye.

Cape Town Pictures

Pictures are up on picasa. They may be out of order, but due to the wonders of Zambian internet, I'm having trouble checking.

Here's just a sample: