Monday, April 9, 2012

When you're poor, it's not easy...

...being green?









Yes! but also...




...being sick

Two weeks ago, we attended to a ward patient who was complaining of hunger. His son was by his side every day and night, but he didn't cook, so they were eating only things wrapped in plastic:  peanuts, mandazi (local donuts), and the occasional soda. Knowing the importance of good nutrition for recovery, we gave the son 10,000/= (about 4 USD) to bring some good, home-cooked meals to the hospital. Sadly, we have now learned that the boy left "in search of food" and never came back. He pocketed the money, swiped the mobile phone from under the hospital bed, collected rent from all his father's tenants (saying Dad was sick and needed cash for treatment), and left town. Never mind that the dad didn't see a single forkful of real food; he also might never see his son again.

...being a woman

A woman tells us that she might miss some clinic visits, since her husband doesn't want her to get HIV treatment. "If I hear about any of you [multiple wives] going to hospital, I will kill you!" (I had to confirm, but yes, this was a serious threat.) She was able to sneak out last week, but who knows when she will next be able to risk her life for the drugs that might save her life.

...being a man

A 65-year-old man was on the ward, without food or attendants. Apparently he has 5 wives and 16 children, but they have all left him with his illness. I am told they won't come back until he can pay the rent on their houses. That sorry patient left the hospital because he needed a caretaker, and now he stays with his 80- or 90-something mom. When I asked if she is able to provide food for the 2 of them, his friend reassured me, "Yes, well, they find things to eat here and there." Should I be reassured?

...being a mother

See above. I think that illustrates well enough that the mother's duties are never over, especially in hard times.

...being a kid

18 years of life, 18 kgs of skin and bones. This AIDS orphan sells his ARVs to people who can't or don't want to register in ART clinics. On the one hand, I am angry that he exploits HIV medicine and stigma, undermining so many doctors' and nurses' attempts at treatment, all the while sabotaging his own health. On the other hand, I recognize that the only way he has ever learned to live is as a sick, poor, and pitiful orphan. Besides, it pays! If he can buy himself a radio or new jacket, he thinks he'll be happy. Maybe he even thinks he'll be normal. I wish someone had raised him to know otherwise, or be otherwise, a long, long time ago.

Wednesday, March 21, 2012

Next time I will carry a camera on my run

A water tanker.
Chipped paint, vanishing in the dusk,
an old sign announces its importance:  WATER IS LIFE.
A crack.
Rusted and unpatched, the tanker leaks.
Water dribbles and escapes; no one seems to notice.
A pool.
Forms, fills, then overflows on the ground.
It spills into the street, as more water tumbles on top.

If water is life, then what is this?
A rivulet.
Breaks away, sparkling under headlights.
Forges a path down the hill, only to be smashed by spinning tires.
A life.
Silhoutted against the neon glare, I see
this tiny frame hunched between petrol pumps under a basket of bananas.
A child.
She watches my approach, lifts her gaze, hopes I will stop.
I don't know how to tell her, this life is leaking and spilling beyond control.

But, I stop.
We say nice things.
She smiles.
I buy some bananas,
and
the fruit is sweet.

A light.
In the darkness, a stream trickles past.
Small and courageous, undeterred by traffic and tires, it is still shining in the night.



50/50


When you ask a Ugandan how he or she is doing, there are 4 possible responses:
(a) Good
(b) Okay
(c) Fair
(d) Fifty-fifty

Fifty-fifty used to bug me. It seemed like the blandest of responses; an elaborate "mehhhh". But I've come to think differently. When someone tells me that they are "fifty-fifty", he/she is saying that the day has been split between opposites. Now that makes sense. In this world of extremes - each day layered with moments of effusive joy and hopeless sadness, sweetest pineapples and deepest potholes, stimulating research ideas and frustratingly slow internet connections that make their transmission near-impossible - the balance may come out neutral, but the experience never is.

Monday, March 12, 2012

Siriimu and fats

The Luganda word for HIV/AIDS is "siriimu". This might not mean anything to you at first, but then let me tell you that in this language R's are pronounced like L's; now you can read it as "silimu", or "slim". HIV/AIDS:  the disease that makes you skinny.

Advanced HIV infection, both alone and in combination with other illnesses that often occur with it (particularly TB), causes wasting. Wasting is more than undernutrition; by definition, it cannot be reversed by nutrition alone. It is the result of a chronic disease process involving a high metabolic state due to constant inflammation in the body, made worse by opportunistic infections in the gut that cause diarrhea and malabsorption. (Actually, a lot of what is known on this subject - ie, cell signaling molecules like tumor necrosis factor alpha, TNF-a, that are thought to be major causes and treatment targets for wasting - have been discovered through research on end-stage cancer. Cancer wasting is also called "cachexia".) Because lean body mass is disproportionately lost in this process, people who are wasted look different from people who are just really skinny. Loss of their facial muscles leaves noticeable depressions around the temples and jaws:
Moderate temporal wasting in an HIV-positive woman
In Uganda, where HIV is fairly prevalent, divots on both sides of someone's face should make you think of HIV/AIDS. (Where HIV is rare, you would think of end-stage cancer.) Many of our sickest clinic patients had profound temporal wasting before they started antiretroviral medications (ARVs). And outside of clinic, while boarding a taxi in Kampala or grabbing lunch in a restaurant in Kiboga, it's not uncommon for me to catch sight of a skeletal face and mentally diagnose advanced HIV.

That said, the appearance of siriimu is very different today than it used to be. When advanced HIV got the name of "slimming disease" there was no treatment for it, and skeletal faces must have been everywhere in the streets and hospitals. These days, ARVs are turning the disease process around:  they reduce HIV viral load, increase CD4 immune cell function, stop TNF-a overactivity and wasting, and plump up the faces and bodies of HIV-infected persons. You could say that they are literally "changing the face" of the disease! And this antiretroviral therapy (ART)-associated weight gain can be quite striking. Wasted and tired-looking patients whom we start on ARVs often come back for the two-week check-up with round cheeks and big smiles; at the six-week treatment follow-up, we have documented ~10 kg (22 lbs) of weight gain in several patients. Preliminary data from our study shows that this weight gain continues, albeit at a slower rate, over the first six months on therapy. Our average patient gains almost 3 kg (6.5 lbs) in that time period, and a handful have gained upwards of 15 kg (33 lbs).

Unfortunately, ART-associated weight gain may not be all good. There is strong evidence that certain ARVs cause unhealthy fats to accumulate in the body, both as deposits in blood vessels (a precursor for atherosclerosis, which causes blood clots or vessel narrowing/blockages) and as abnormal distributions of fatty tissue around the body (called lipodsytrophy, which is associated with metabolic disorders like diabetes). The second effect, lipodystrophy, can be easily picked up in a physical exam:  its hallmark signs are fatty accumulation around the abdomen and upper back, plus/minus fatty loss from the face and arms. So we assess body shape and waist-to-hip ratios at every visit, and we also check fasting blood sugar levels to see if our patients are developing diabetes. So far, we haven't seen these kinds of changes - happily, round cheeks predominate over rotund bellies! - but it's too early to conclude anything. Many patients have only completed the early stages of follow-up, so we have a lot more data to collect. Fatty deposits in the blood are harder to detect in a physical exam, but we perform monthly blood pressure checks to get some idea of what's going on inside. We haven't seen any trends toward fatty deposits and stiff blood vessels yet - but again, these changes may take longer to become obvious. In order to answer this question, we are planning a long-term study on heart disease risk, including annual blood tests for cholesterol and other fats and EKGs to assess for heart attacks, that would follow a subset of our patients before and during the first five years on ART.

As you can see, the interactions between HIV, ART, and fats are complex. There is uncertainty around how much weight gain is healthy on ART, how best to measure heart disease and metabolic risk factors in such patients, and how to balance to benefits and side effects of ARVs. Last week we all cheered for a man who proudly waltzed into clinic with 8 kg weight gain in the past month on treatment. But doubt quickly set in. Is that rate of weight gain healthy? Is his new fat in the right proportions and places? Do we really know enough to celebrate? My colleague congratulated the patient and then whispered in my ear, "I just hope that this is as good as we say it is!" Solemnly, I had to agree.

I am not sure about the true nature of rapid weight gain on ART, but hopefully soon an answer will emerge from our accumulated clinical experiences. All the while, it's fascinating to witness the dynamic nature of a disease. In just one decade, since ARVs came to Uganda, HIV/AIDS has gone from "the slimming disease" without any treatment to an impressive plumped-up state on ART. Emaciated patients appeared saved; a solution appeared found. But, now that people with HIV are living longer than ever, we are finding that their additional years are pock-marked with above-average rates of chronic diseases like high blood pressure and diabetes. Our "solution" actually creates new problems. Yes, these are secondary concerns - better to have heart disease at 60 than be dead at 26 - but still they are serious, and they are going to affect millions.

Through this unfolding tale, I am reminded that medicine is the eternal student of the human body, A Quite Mysterious Teacher! As we try to understand the body's complex responses to every intervention we create - a new chemical to swallow, a diet to control all inputs, an operation to modify or remove organs, a few blasts of radiotherapy - we must be humble, ask questions, take good notes, and be ever-ready for the next surprise lesson.

Tuesday, February 7, 2012

There must be dust: Part 2

The dry season is well upon us, and it sure is dusty! It is also rather hot, ringing in at 35 deg C (95 deg American) this afternoon. But today, I realized 2 unexpected advantages to this extreme weather:

  1. You can tell how far people have traveled. Clean = short distance, dusty = considerable distance, dirty beyond recognition = at least a few hours on the road. One of our patients today tried to swindle an extra travel reimbursement by claiming a long commute to clinic. This was news to us, as we thought she lived nearby. So the study nurse examined her feet (clean) and hair (not even lightly dusted) and concluded that she must actually live quite close. When we confronted the patient with this irrefutable evidence, she laughed and confessed - okay fine, Dust Detective, you saw right through me! She left the clinic with a sheepish smile and no swindled money. The rest of the clinic chuckled, knowingly, like this happens all the time. And I enjoyed seeing how this little bit of local knowledge has become a new lens for me to tell something about the journey of the person I'm with.
  2. The water runs warm. Our tank in the village usually provides a steady stream of cold water for bathing, showering, and other activities that make me shiver - but these days, it's solar-heated to a perfectly refreshing temperature! Ahhhhh.

Expat expose -slash- Invitation to visit the developing world


In the last post, I mentioned my Kampala bubble. You might have wondered what I meant by that. Well...

Projections
As I departed San Francisco, I put on a brave face as we talked about squat toilets, stray dogs, and the horrors of a death by rabies. You read articles about maternal mortality, corruption, and fighter jets in Uganda, and emailed me links to said articles while expressing concern for my safety. I have written back with real stories about dust, potholes, and death and disease. These are the dominant projections of Uganda to the rest of the world, of a harsh and difficult place. Many of them are spot-on. But I must admit, there is so much more to my life than that! 

Realities
      > Lavish luxury
The cushier, less talked-about aspects of my expat experience include but are not limited to:  Deluxe Geodome vacations on serene lakes in the beautiful West; weekends at the pool with a swim-up bar and sauna in the changing room; an idyllic farmer’s market with wood-fired pizza picnics on the lawn, and a background of United Colors of Benetton children chasing bunny rabbits around palm trees; unprecedented responsibility at work and privilege in social settings; and wonderful, friendly, helpful people to clean floors, dishes, clothes, cars, bikes, and even take out the trash.

Deluxe Geodome at Lake Bunyonyi
Deluxe geoviews from our dope dome balcony
Clearly, we are not deserving! We belong at the kids' table
Artsy market selling "cheeses, ...jams, ...stone-baked breads". In my language, these words mean "everything you miss"
      > Comforts from home
In September I attended a Rosh Hashanah dinner in Kampala, with all the good cheer and food of this holiday - and none of the Manischewitz. Ideal! Soon after it was time for Oktoberfest, so a large crowd gathered at a fancy hotel, danced in circles with felt hats and lederhosen, drank real German brews, and ate tons of sausage. When in Rome? Apparently, not so much! On any day of the week you can visit Bubbles O’Leary, a bar that serves continental fare and imported its dark wood interior from a real Irish bar in - yup, Ireland. And we've got a Belgian cafĂ© and bar, yoga studios, a few gelaterias, casinos that look straight out of Vegas, and heated debates about the best pizza in town (sound like NYC? well, almost. people just love a good squabble).

KA-M-PA-LA-H in Hebrew letters
     > Local perks
All this, and that's before I've listed off a few of the joys that naturally occur in foreign places. There are perfectly ripe and unbruised avocados at 10 cents a pop. Just out of town in any direction, you'll find green hills - and in one direction you might even run into The Nile, a beautiful and calmly raging river. The streets throb with lively music, the markets are bursting with color, and everywhere waft the smells of roasting meat and carbohydrates to infinity. Travel has given me the gift of an international network of friends, as well as the chance to do meaningful work in challenging situations with inspiring people, where I learn so much every day.

Hairy Lemon island resorts splits rapids along the Nile, and is easily a favorite getaway
These people alone make the trip worthwhile
If you have ever felt sorry for me, or for your other friends living in the developing world, please ask yourself these questions:
  1. Does your friend rave about having found “the best latte EVER”, “heavenly pedicures!”, or the joys of a personal cook “I just can’t live without”?
  2. Do days go by when you don’t hear from that friend, assuming it's because she’s got malaria or he’s saving babies at an orphanage – only to see that friend's grinning face resurface in photos on Facebook from a weekend on a lake with beautiful flowers and neon sunsets, or white tablecloth dinners and cocktails on the beach?
  3. Is your friend becoming proficient in things like tennis, croquet, and wine?
  4. Has he/she ever Skyped you from a private balcony, fresh mango smoothie in hand?
If you answered no to all of these questions, then maybe your friend is truly living it rough - but probably you just need to get in better touch. On the other hand, if you answered yes to any of the above, then it's safe to say that your friend is living a glorious expat life!

Reconciliation
This "expose" does not mean that potholes and disease don't exist - for they do, as world news and the rest of my blog attest. My chances of experiencing badness (robbery, infection, sunburn, motor vehicle accidents) are definitely increased in Uganda as compared to the United States. But these risks can be minimized to almost baseline! Take disease, for example:  The well-vaccinated traveler may fall victim only to short-term diarrheal discomfort, the sort you can pick up at any roadside Chinese buffet. I've been pretty lucky on this front, which I credit to simple things like hand sanitizer, no meat, and a stomach of steel. As for road risks and safety, here's a story from this weekend:  While sitting in a broken-down matatu filled with smoke coming off its overheated engine, my friend and I joked that our odds of getting cancer from diesel fumes had just increased from 0.0021 to 0.0025. We laughed at this joke, because the situation was ridiculous; then we made serious faces to each other and sighed, "Yeah, but for real. Let's go before this engine blows." We stepped off of that smoking gas tank, which had been our ride, and 5 minutes later caught a safer matatu for an extra 50 cents. In the end, we reached our destination safely. I did miss my next bus, but it was totally worth it. Unpredictable events and inefficiency are inevitable in travel, and a desire to minimize risk has made me much more tolerant of these compromises.

Smokin'  'tatu
The bottom line is that most expats enjoy more than enough privileges to smooth out the rough. And when the going does get rough, the biggest luxury comes from having the means to decide when to live like everyone else, and when to check out. Further luxuries give us options as to how to check out. "What a stressful day! To unwind, shall I watch a movie on a home projector, snatch some quiet hours by the pool, or make a picnic from a loaf of crusty bread and soft cheese as bunnies hop past?" Some developing world places don’t have so many options, and some have almost too many to be considered rough. In my opinion Kampala is somewhere in the middle, just rough/plush enough to keep it always interesting.

Strong women depicted by a strong woman, artist and patient in the IDI clinic
"What a stressful day!"
...and here I am carrying a fraction of the burden, for 10 seconds, without even a single baby on my back
So, the punchline? Stop feeling sorry for your dear friend in a developing country! (Especially if it's me.) Go get your shots, pack a bag, and book a ticket to visit him/her in some place new. It sounds crazy, but I’m serious – the money you spend on vaccinations and plane flights, you will make back on luxury safaris, spa treatments, and tailor-made suits that would cost a fortune anywhere else. (That is a pretty sweet deal.) You will also see poverty and suffering like you can't imagine, bear witness to some of the world's greatest disparities, and gain a new appreciation for the resilience of the human spirit. (This is my invitation.) Developing countries could not be happier to have more visitors. In exchange for giving them that, you will have the experience of a lifetime.

Wednesday, January 18, 2012

So, a Christian, a Jew, and a Muslim sit down for tea...

No joke. It was a day after work last week, and a Christian (our medical officer), a Jew (myself), and a Muslim (our lab technologist) sat down for tea. We plus Marion (the study physician and my Fogarty twin) all live together in the Kiboga project house, for 2-4 nights each week. At first I thought this arrangement was purely practical, but increasingly I appreciate how the house brings together different people to form a diverse community. In fact, the house is one of my favorite aspects of the job. I love coming home to socialize with my coworkers, eat their chapattis, battle darkness with fire and wax, and hear the latest translations of Ugandan local television news. (Thanks, Marion - I am especially grateful for the chapattis!)

Last week's conversation is a good example of how this house provides experiences I just wouldn't have in my little bubble in Kampala:

First we discussed the composition of the Earth. The lab technologist pointed out that it is commonly described as 2/3 water, so it's strange that all this worldly water does not slosh around the middle or fly off the surface. I took the opportunity to brush off some old knowledge on gravitational forces, ocean currents, and the hot boiling lava inside Mother Earth. Easy.

Second we turned our gaze up to the stars and wondered what else is up there. The Christian was always told that Heaven is in the sky, but he asked what that means - among the stars, or beyond them? And could he get there in a spaceship? We pondered this quietly for a moment. Not so easy. Then the Muslim shared that in Islam there are 7 Heavens, each with a different gate and gatekeeper. Are they the same as the Christian Heaven? Would these 2 friends be able to meet each other there; and, if so, behind which gate? More food for thought. After a while, I suggested that maybe Heaven is a place inside all of us. (Judaism is not so concrete on the afterlife. The Book of Life keeps us accountable in the present, but what happens next is very much based on personal belief.) My proposition was the most foreign so far, but the others considered it for a minute. Finally we agreed to put this complicated idea to rest and move on to "simpler" topics.

And so we arrived at G-d; basic questions like who He/She is and how to find Him/Her. The Christian wanted to discuss G-d as the Omnipresent. His religious teachings said that G-d is everywhere but impossible to localize. With genuine uncertainty, he asked, if localization is impossible - does that really mean that G-d is nowhere? I had no good answer; likening G-d to electrons seemed awesome and, at the same time, far too prone to misinterpretation. The Muslim wanted to discuss G-d as the Almighty. How much control do we really have over our own lives? And if we keep asking these questions but G-d does not intend for us to find the answers, will we ever know the Truth? Again, I just listened.

This got me thinking about faith, and how that is just it - unending belief in a Truth that you may never know. Faith is funny. While inherently irrational and deserving of suspicion, I have seen it act as a great force of positive action in Uganda. For example, irrational belief in good outcomes has motivated many of my colleagues and patients to work against the odds. Driven by the strength of their beliefs, they invest in hopeless cases and save lives that others have long assumed over. Faith has basically wrought miracles before my eyes. I'm not sure exactly what religion I ascribe to, what constitutes the Heavens, or where G-d can be found - but I do believe in faith.

Just then, we heard scratching and squawking at the front door. Since we weren't on the brink of Total Truth, Divine Discovery, Absolute Epiphany, or any other regular noun requiring capitalization, I got up to see what it was. Maybe it could help. A message from G-d?! A clue to the Truth??! Maybe, but I think not. It was just another lost and wandering chicken from the farm next door.

For reasons unclear to me, the chickens do this a lot. One after another, they will leave their chicken paradise, with all the cushy nests and nutritious grain a bird could dream of; meander across the road; and trap themselves in our barren yard, with nothing but a collapsing chicken coop and a bed of dusty greens. Some may chalk this up to chicken stupidity - and yes, you are probably right - but, just for fun, I want to give these chickens more credit than that.

Crossing the road to see what's on the other side, after all, may not be as lame as I used to think. All of us who walk into murky waters and ask questions with no certain answers seem to be doing just that! With a whole new (and perhaps delusional) fondness, I watched that stupid bird peck our dirt. Then she must have decided to go home, because she ran into a few concrete wall dead-ends, dusted herself off, and finally pecked back to and out of the gate. So graceful. Farewell, Intrepid Hen!

I do appreciate this house, and sometimes it really does feel like a home - but this ain't no Heaven, apparently not even for a chicken. (Actually, that's reassuring; Heaven should have regular power supply, potable water, dark chocolate, and no mosquitoes.) Still, like that chicken, I think it's worth crossing the road to find out for oneself. And I'm so very glad to be here, across a huge watery 10,000-mile road from home - making friends, asking big questions, finding faith, trying to do good work, feeling small but empowered, and generally enjoying life - with a bar of dark chocolate I packed for the journey.