Hunger is the best sauce, but the worst medicine

At the end of a long clinic day, as we tuck into our all-too-familiar plates of matooke, rice, and beans - with salivary glands churning in overdrive, stomachs grumbling, taste buds exalting - we like to say that "Hunger is the best sauce". Even these dishes, which are very mildly spiced and occur in identical fashion every day, taste wonderful. I lick my lips; I rub my belly! Anyone who has eaten reconstituted refried beans on the top of a mountain and thought that they were experiencing culinary nirvana, knows exactly what I'm talking about.

Beyond the point of making your meal taste a little better, though, hunger becomes dangerous. Extreme hunger is even lethal. This problem occurs mainly among rural, impoverished, and sick or isolated individuals. Most rural Ugandans are vulnerable to hunger because they participate in subsistence farming, cultivating small plots of land that supply just enough produce to put food on the table each night. (Or each morning, as 1 meal a day is standard for the very poor.) When someone becomes sick and can't manage the garden, or is socially isolated and can't benefit from community harvest, hunger sets in. From here, things usually get worse:  the hunger causes weakness, and weakness leads to more hunger, which leads to greater weakness, which leads to more hunger, and so on.

Lack of food is the beginning of an especially steep downward spiral for our HIV-positive patients. They all have to take daily medications to keep their HIV infections under control and prevent other opportunistic infections. Since antiretroviral therapy (ART) needs to be taken with food, many become "ART non-adherent" or "defaulters" when food is scarce. HIV then rises up, out of control. Other infections like TB, PCP, and cryptococcal meningitis can pounce. The body becomes weak, wasted, immune-compromised ... and people perish. While every patient in our clinic is technically living in poverty, the ones who struggle to eat are the poorest and sickest.

One woman, NA, used to complain of "dizziness" whenever she spoke with clinic staff; this was her way of letting us know that she was lightheaded from not eating enough. Then, last month, she stopped coming to clinic. When our community health worker went to her village (a full day's journey - 120 km round-trip on narrow dirt paths) to find out why she was missing appointments, he found NA on the floor of the family's mud hut. What he saw, when he looked inside, is not captured by the simple words "weak" and "wasted". There lay a young woman, previously plump and smiling, reduced to a 2-dimensional shadow of a body on the floor. She was nothing but skin and bones, literally, with her breast tissue so completely consumed that only 2 wrinkly sacks of skin were left hanging from her chest. The tuberculosis infection had taken root in lymph nodes throughout her body, causing swollen nodes and large abscesses in her left armpit and under her chin. Both were draining blood and pus. NA's left arm, held for so long in a crooked position while she was ill, had developed a contracture - the skin grown taught across the inside angle (like the kink in a chicken wing) so that she couldn't extend her arm past 90 degrees. Too weak to stand, NA was carried out of her village in a stretcher. We wasted no time in admitting her to the hospital and starting treatment for TB. But, of equal importance I think, recently we added to her treatment plan an allowance of 5,000 Ugx (about 2 USD) per week to afford some food. Now she is eating better, undergoing observed TB and HIV treatment by the nursing staff, and doing self-physiotherapy for her arm. Her weight has increased to 27 kg. She can almost stand alone. Her left arm extends to 120 degrees. A finished plate of food rests on the bed beside her head. Things are looking up! NA's goal for discharge is to walk back into the village on her own 2 feet, and we couldn't agree more.

Another severely wasted patient came to us 2 weeks ago with signs and symptoms of a brain injury. Like the young lady above, NG had run out of money and strength for food and stopped taking his ART. While his body degenerated from hunger, weakness, HIV, and possibly other infections, he suffered one additional blow:  struck by a motorcycle while crossing the street, there was report of a serious hit to the head. When one's reserves are so low, all it takes is a single unlucky event to put the body over the edge; infections are not the only threats to the immune-suppressed! By the time his family carried him into clinic, NG was disoriented, losing motor control of his limbs, and had a coarse tremor in his arms and lips (signs of cerebellar, brain coordination center, dysfunction). Needless to say, he was also just skin and bones:

Instead of buying new clothes, people here tie cloth bands to keep loose pants from falling off the waist. You can tell how much weight one has lost by counting the number of bands he uses. This man needed 3 strips of cloth, tied to his belt loops and wrapped around his waist, to hold up his previously well-fitting pants.

We ran through the possible causes of brain injury in such a patient:  certainly trauma to the brain from the motor vehicle accident could have caused a bleed into his brain, but brain infections are also common in people who have stopped taking ART. Through an incredible (and I really mean in---credible) triumph of the public health system, we managed to transport NG to Mulago in Kampala and get him seen by the neurosurgeons. They determined that he had a brain abscess and performed emergency brain surgery the following day. Last Tuesday we visited with NG at home. The 40-year-old man who greeted us - sitting up, smiling, eating plantain stew, with a well-healing scar on his lower scalp - was barely recognizable from the 70-year-old-appearing limp skeleton that we had carried into Mulago last week. With antibiotics, and of course another 5,000 Ugx per week to keep food on the table and ART in his body, we hope that NG will continue to recover.

Now that NG can speak again, he has told us another amazing story.

It all started with our question, How did you come to clinic that day 2 weeks ago? Dropped off by the ambulance that was carrying my mother to Kampala. Your mother, oh...what happened to her? She was burned. Hmm, I see...well how did she get burned? Now the story unfolds!!! NG explained to us that about 4 weeks ago, just after his accident, no one was home but himself (bedridden), his mother, and a young girl attendant. While fetching water outside, the old lady reportedly fell down and started shaking - what sounds like a seizure. Reason's unclear. Anyway, the girl heard the noises, went outside, found the woman convulsing, and called the local witch doctor to come give treatment. When the witch doctor arrived, he said that her seizure was caused by evil spirits. These spirits, he announced, resided within the woman's chest and needed to be burned out. The woman was lying prone (face-down) on the ground, so he stuffed dry grass under her body to fill the space between her breasts and the earth. Then, with a crowd of villagers gathered all around, he set fire to the bundle. When the last of the grass had burned out, the onlookers came and turned the woman over. There they discovered a gruesome mistake:  her chest was raw, weeping, and - once endowed with a generous bosom - now completely flat. The witch doctor apologized for her injuries and promised to help with the wound care. The old woman was carried inside and laid down to rest. For the next 2 days, the witch doctor hired a local nurse to apply antibiotic ointment and change the bandages. But on the 3rd day, instead of fetching the nurse, the witch doctor ran away into the hills. Without proper wound care, the old lady's chest became infected:  first superfically, then deep into the tissue, and finally spreading into her bloodstream. Within a week, her whole body was septic. All the while, NG was deteriorating on the mat at her feet. It is hard to imagine a more hopeless situation:  mud hut, empty food shelves, not a shilling to spare, abandoned by the witch doctor and forgotten by the local nurse, a son with a brain infection and his mother with an infection everywhere else. Then, out of nowhere, the ambulance appeared! We still don't know who procured that ride.

These stories are hard to believe and may seem totally unique, but - if you have time to listen - every person you ask has similarly unbelievable stories. I am reminded of the mottos from San Francisco General Hospital,

 As real as it gets (official motto)

You can't make this shit up (unofficial)

which, taken together, mean that real life is the strangest. From San Francisco to Kiboga, I have found this to be a universal truth.

So, allow me to organize my thoughts from this very long blog post:
Real life is unreal.
Enjoying hunger as a delicious sauce is a privilege and a luxury.
Recognizing hunger as a lethal global scourge is much more important; in fact it is a necessity.

As we head toward the American day of thanks and feasting, it seems appropriate to remember that there are basic material needs that we, all humans, share:  food, water, access to information, and access to quality health care. Our patients' lives have shown me that providing support for these needs is not only simple and cheap, but also at least as important as any other global health intervention.

My country life

Long time. Maybe it's the slow pace of life in Kiboga that has kept me from whipping out my computer and cyber-reporting every major event. Eh...more likely, it's the lack of electricity and lack of time...but no matter. My computer is fully charged today, so this blog is back!

Let me start with some photos from the past few weeks.

My walk to work is a mere 10 minutes, but in that short time I pass a petting zoo's worth of animals. It's a good test of coordination at the start of each day:  don't trip over the goat's tugged cord, don't kick a chicken, and please don't step in poop! In addition to coordination, I have learned a lot about our friendly animal neighbors. 1) Pig poop smells much worse than cow dung, so beware of the careless cow dung side-step that lands you in a pile of pig poison. 2) Chickens will eat anything, including all the greens you planted in the garden. Ugh, and I thought they just chowed on grains! 3) Sheep have very wide and floppy tails. I don't think this fact is widely recognized, but take a look at the back of this here sheep - he practically has a beaver tail. 4) A bull's horns are like a human's lips. When they grow curving upward, the message is strong and proud, like a confident smile. On the other hand, for the bull with the down-growing horns, depression is almost certain. Not only does he have to wear a permanent frown on his head, but it's a frown that weighs 10 kg. How unfortunate you are, my poor bovine Eeyore.

One morning last week, I decided to paparazzi all the creatures I see on my petting zoo commute: 

The beaver tail! Does anyone else think this is so weird?!?

On the way home from work last week, we spotted a rainbow:

And here's a tree outside the hospital that caught my eye in the dusky evening glow:

 (These round metal huts are standard lodging for policemen and their families)

ROTW (5,6,7...now I'm almost caught up): Blendin' stuff

• The Eskimos have 400 words for snow.
• According to Jonathan Safran Foer in Everything is Illuminated, the Jews have 400 words for schmuck. (My Yiddish-expletive-fluent grandma could attest to this better than I, but I think it's close to the truth.)
• According to me, hot days have 4 words for heaven:  smoothie, crush, milkshake, and icy blended beverage.

Today was hot. Really hot. ... So ... Guess what I did??????

ROTW (5):  When you buy a large PAPAYA (and when do you not? I picked up the smallest pawpaw I could find in the market today, and it was - as my friend puts it - the size of a small child)

Ingredients
1 cp chopped papaya, juice of 1 lime, 1/4 cp mint leaves, 1 tsp grated ginger (or ginger crystals), 1/2 cup milk, honey to taste

Instructions
Blend the stuff. Garnish with mint leaves. Eat!

ROTW (6):  When the AVOCADO is so soft it might melt in your hand, and you feel like drinking a meal (but it's still too early for beer)

Ingredients
1/4 large avocado, 1 small banana (equals 1/2 regular banana), splash of water, honey to taste

Instructions
Blend. Eat!

ROTW (7):  Whenever - seriously, WHENEVER - you have PASSIONFRUIT on hand (sadly I polished off my last one this morning, but this would have made trip to heaven #3 of the day)

Ingredients
2-3 small bananas (peeled, cut, and frozen if you thought this far ahead), guts of 2 passionfruits, 1 cp plain yogurt

Instructions
Blend. Eat!

Now I know that some of these might sound weird, but don't be a schmuck - putz, schmendrik, or schmo - and knock it before you try it. Just blend and eat, then tell me how it was.

And by "it", of course, I mean your trip to heaven.

Why Kampala is crazy (1): Islam and boxing

I think I owe you some stories about Kampala, and why it is one cRaZy city.

I want to tell you a story about boxing, boxing and Islam, and boxing and Uganda.

Boxing and Islam have an interesting (if not entirely consistent) connection. - Remember Cassius Clay, the most famous of all boxers, who converted to Islam and became Muhammed Ali? - Did you know that Mike Tyson, famous or infamous boxer that he was, also converted to Islam? - Now I have met a pair of twins in Kampala, Hassan and Hussein Khalil, who both are devout Muslims and former boxing champions. They tell me that boxing is considered the ultimate sport in Islam. It requires strength, but also strategy. You need to have speed, but also stamina. As a sport for individuals, it tests personal fortitude and self-sufficiency. Discipline. Timing. Dedication. Both physically and mentally, boxing is - to be brief - JUST PLAIN HARD.

I was curious about the history of boxing and Islam, so I did a quick Google search. I was surprised to find a web-world of questions about whether boxing is even allowed in Islam. Allowed? Really? Again to my surprise, many Muslim scholars are of the opinion that competitive boxing is not compatible with Islam:

• Sayeth Abo Muhammed Samir Faid, on allexperts.com:

According to a juristic rule in Islam stating “Taking a lawful act as profession is permissible, save what’s made exceptional by a clear proof”, sport is basically permissible in Islam, if not obligatory. The Prophet, peace and blessings be upon him, urged his followers to practice some sort of sport and exercise that help keep the body fit, as long as that it doesn’t entail harm. 

As for boxing, it is permissible if it’s taken as a mere hobby to train oneself on how to practice this sport, without taking a human being as a target (i.e., one should direct the fists to a punch bag and not to a person). But, one should not think of adopting it as profession. This is not permissible, due to the great harm and untold risk it involves, especially to the body and life of the victim. Islam never allows inflicting harm on any person; Muslim or non-Muslim. This is based on the juristic rule: “There should be neither harm nor reciprocating injury”. 

Besides, boxing entails directing blows to the head and face. This is forbidden in Islam, according to the Hadith of the Prophet, peace and blessings be upon him: “If anyone of you fights (or, in another version, beats) a person, he should not hit him in the face." (Agreed upon by Al-Bukhari and Muslim) 

• Sayeth Mas'ud Ahmed Khan, on masud.co.uk:

Looking at the evidence against boxing, it is not hard to realise that boxing must be considered haraam(forbidden) or undesirable to the point of being haraam (Makruh al-Tahrim). The object of boxing is knocking an opponent unconscious by physically hitting him with excessive force about the head, the intent is physical damage to your opponent. At the end of all fights that I have seen, the face is left severely damaged and scarred, we know from ahadith that the Prophet (Allah bless him and give him peace) forbade hitting the face: 

Narrated Abu Huraira: The Prophet said, "If somebody fights (or beats somebody) then he should avoid the face." [Sahih al-Bukhari Vol III Hadith 734.] 

and also 

Narrated Salim: Ibn 'Umar said, "The Prophet forbade beating (animals) on the face." [Sahih al-Bukhari Vol VII Hadith 449] 

[...] When the damage to a person is so severe such as brain damage or worse, fatal, then this has to be considered haraam, for there is no reason to suffer such injuries. Our bodies and lives are anamanah (trust) from Allah ta'ala given to us for safe keeping, they do not belong to us to do as we choose, so we have no right to participate in a sport or any other activity that violates the amanah and whose objective is intense physical damage. 

It is sad to see such people as Muhammad Ali, who once "floated like a butterfly and stung like a bee" now a shadow of his former self (although still has a remarkable dignity about him), Muhammad Ali once one of the finest examples of masculinity coupled with charisma, physical beauty and elegance, an object of pride for the entire Muslim Ummah, now an object of pity and a distant memory of bygone glory. Ironic isn't it considering the current downtrodden predicament of our Ummah? Should a man have to be reduced to this through his own doing? 

[...] Any parent whose child takes an interest in boxing should bear in mind the severe dangers and consider answering for their decision on the Day of Judgement, since our children are also an amanah from Allah ta'ala. The physical training and discipline offered by boxing is excellent and children should be encouraged into physical exercise. Rather than encourage them to do boxing, parents should encourage children to learn semi-contact Karate or Kung-Fu, since the object of semi-contact is not physical damage but to score points by minimum contact, anyone one using excessive force is penalised. Semi-contact Kung-Fu and Karate also teach vital self-defence techniques that are needed in an increasingly violent society and parents should instill discipline and good adab (manners) in their children not to show off the skills they may have learned.  

This seeming disconnect, between embraced boxing among Muslims in Kampala and forbidden boxing in various Islamic online communities, is explained by the next subject:  boxing and Uganda. The love of boxing in this country is so strong, it seems to overwhelms any religious controversy about boxing in Islam. Four of Uganda's 6 Olympic medals have been in boxing. This country has also won boxing medals in international competitions like the Commonwealth Games and the World Championships. Children train at boxing gyms around the city. Boxing is even revered as a peace-making sport, because it channels fighting energy from the streets into organized, supervised activities of self discipline. The Eye (local coupon book/city guide/magazine) writes, "[Boxing is] the perfect outlet for that favourite sporting tale:  rising up from rough surroundings with nothing but yourself and perhaps a little support, putting in your work and making something of yourself".

Now for one final surprise:  I have gotten swept up in the Kampala boxing craze. No joke. I bought my own wrapping, and am semi-serious when I say I hope to spar one day! My trainers are Hassan and Hussein, former champions I told you about; the place is East Coast Gym, a very modest but renowned boxing establishment attached to a mosque on Naguru Hill.

Up the hill, past the gospel church, behind the mosque, say hi to the kids, mind that you don't step on a goat

East Coast Gym! (outside...

...and in)

Between prayer calls, the brothers are dedicated coaches. They take us on grueling hill runs, count out jumping exercises and calisthetics until our muscles go numb, and withstand practice blow after practice blow, with pads on their hands, in the newly-roped boxing ring.

Hassan, ready for the punch

Helping us to get the wrapping right - must cover knuckles several times, and make sure to support the wrist

If it's not already obvious from the photos, East Coast Gym is not a boutique Mzungu attraction. This is a hard-core training center.

On any given day at East Coast, I may find myself jumping and punching next to the likes of:  runner-up at last year's heavyweight World Championship (and Olympic hopeful); a member of Uganda's 8-person national team; neighborhood heroes and role models; the one and only female boxer in Kampala; and a blind boxer who bravely returned to the sport after losing his sight in 1995. It is a total trip - and honor - and fright - to be in the ring with these guys and gal. The 5,000 Ugx (less than 2 USD) that I pay for each session helps to maintain the gym, buy equipment, and support competitions for these local boxers.

Just an example of the kind of musculature you can witness at East Coast Gym

My fellow Fogarty in Kampala, Devan, hits hard and runs even harder

POW! BAM! POWPOW! BAM! POWPOWPOW! BAMMM! - it's a busy place

Finally, I should mention that this is the best and toughest workout I have ever experienced. So much adrenaline and exhilaration cannot be found anywhere else - except perhaps on the end of a bungee cord, which I'm just not willing to try.

I know that Uganda supports my new love. In view of the fact that I'm a long way from hitting anyone in the face - and even farther from being able to pack a punch that inflicts any kind of harm - I hope that Islamic scholars, my own religious leaders, and other pacifists everywhere in the world can accept my new love, too.

BAM!

Discontent in Uganda, Uganda in the news

Read this. Real stories about Rolex, political unrest, commodity prices, and stark have/have-not contrast that will probably sound familiar to you by now...

Follow-up on follow-up

Photos from Kiboga today:

STRUGGLE

Patients waiting to fill prescriptions at the pharmacy. The wait is usually several hours long, and sometimes can stretch over days. When I told our research assistant that I wanted to show how many people wait for so long, he protested, "But, they are not many today!" Well...you get the idea.

&

SUCCESS

Despite the inconveniences of long travel distances and endless waiting times, most of our patients act with grace and graciousness. We like to think that it's not just because they have great manners, but also because they are happy with the care they receive. Here are the contents of one particularly lovely "bag of thanks" brought in by a patient today.

Follow-up: challenge and opportunity in HIV testing and treatment

Here's a nice, short article from the New York Times this week, which brings up an important point about HIV diagnosis and care:

Follow-up is key.

And, oh, so tricky.

...

Our study team works very hard to maintain close follow-up with our patients. We see a rural population, so the average patient travels a long distance - sometimes a whole day - just to keep an appointment. Also, since our study population is extremely poor, the price of travel is a considerable barrier. The trip to the hospital can cost over 20,000 Ugx (7 USD) in each direction. That is more than 10x the average daily income, dispensed twice per visit - not to mention the opportunity cost of missing a day in the fields, at work, or at home with the family. We reimburse up to a fraction of this expense, but the money we give cannot replace all the money spent (nor should it, ethically - else we border on coercion). The only additional help we offer is a hospital bed where a patient may spend the night, for free, before traveling back home all day the next day.

Mothers and babies leaving the hospital - how many miles to go?

Considering so many obstacles to care, every visit feels like a minor miracle. So you can see why this (recent data from our interim analysis) feels like a MAJOR miracle:  99% of our patients complete all, or almost all, of their 7 monthly visits. Amazing! They come to get prescriptions refilled, to have a trained ear listen to their heart and lungs. But more than that, I think they come to have a caring hand placed on their shoulder, that hand belonging to someone who knows them well and cares for them, who wants to hear about their pains, their nightmares, their dreams, their families, their hopes for the future. I credit our clinical staff and community health worker for the VERY strong relationships that they create with our patients. This personal brand of medicine brings the doctors and patients closer, and gives the patients a reason to keep coming back.

...

Now, of course, things could be better. We do not have point-of-care testing in Kiboga, as was shown to be so helpful for that clinic in Mozambique, so there is an inherent delay between (a) testing the blood for HIV and CD4 counts, and (b) starting the patient on appropriate ARVs.

In the general ART clinic, the median delay to treatment is just under 3 months. That statistic is obtained by looking at all patients who actually started ART, i.e. those who reached point (b). Meanwhile, a quick glance into the clinic records room would reveal to you a collection of patient files that gather dust in a "pre-ART" section, i.e. the patients who passed point (a) but then got lost. Did they move, transfer, forget, decline, or die before starting HIV meds? We don't know. In truth, many probably died, but these are the hardest patients to find, and their deaths can be very hard to confirm. With such losses occurring but not reflected in the "median 3 month delay", you can see why it is critical to shorten and track patients through the (a) to (b) time.

Row 1, transferred out; Row 2, lost on ART; Rows 3-4, lost pre-ART

In our study, by scheduling the initial 2 visits close together, we have reduced the delay to ART to 1-2 months. Perhaps more important, we keep track of every patient recruited for the study - phone calls when they have a mobile, and "neighbor watch" or home visits if needed - so we lose almost no one between testing and treatment. In the coming weeks I will be returning to the general ART clinic records room to sift through the "pre-ART" files, and try to track those patients to find out what happened to them. Then, with the past outcomes counted, we will be able to estimate how many deaths have been averted with closer follow-up. Looking at those dusty folders, filling 2 whole rows...I think it will be many. I will let you know what I find out!

Filing folders for patients in our study

...

To bring it back to the article:  the shorter the delay between HIV testing and treatment, the greater the number of patients who will actually get the care they need. Innovations like rapid CD4 counts allow for fewer visits, especially in the treatment initiation stage when patients are sickest and most vulnerable. This could save many, many lives.

Still, in the absence of such new tests, our study is proof that the provision of quality medical care - with individualized patient visits and continuity with providers - can be enough to motivate patients to seek care in the most adverse of circumstances.

Combine the strengths of thoughtful, new technologies and focused, age-old patient care, and we may finally see how much better things can get.