Without power, but not powerless

What do you do when you walk into work and find a large mass slumped over your desk - rising, falling, shuddering - - - a body?

You wipe the sleep from your eyes, for the 2-hour journey from Kampala is over, and you think to yourself, Welcome to Kiboga.

I remembered seeing this teenage boy (one of the participants in our study) the week prior. At that point he had come in for extreme fatigue, with blood counts so low that his tongue and palms were white as chalk. We diagnosed him with AZT-induced anemia, which is a rare side effect of AZT (stands for zidovudine, one of our first-line anti-retrovirals). In unlucky cases like this one, AZT stops the body's production of red blood cells. The resulting anemia is often severe and sometimes fatal, but it can be reversed by stopping the medication. Unfortunately, despite changing this boy’s regimen 7 days ago, the AZT had lingered in his body and continued to bring down his blood counts. Now he could hardly stand up. To make matters worse, when we placed a needle in his vein to draw a blood level, he started vomiting. Projectile yellow muck - all over himself, the chair, and the clinic floor.

What do you do when you have a super sick anemic patient?

You make an urgent order for 3 units of blood. (His hemoglobin came back at 3.5 - for reference, normal is above 12.5, and many clinicians would consider this value "incompatible with life".) Sadly, you are told that blood is in short supply (3 units total in the hospital) and only 2 units can be spared; the other must be saved in case any one of the 200-300 patients in the waiting area and wards needed it. So you find a volunteer to carry your young patient to the ward, and you hope for the best. Welcome to Kiboga.

And, what do you do when you have vomit all over the clinic?

You ask for a janitor. Sadly, the janitors are missing. Someone tells you that it was hard enough to get them to sweep a clean floor this morning - let alone help with a dirty one now. Your intrepid study nurse and community health worker take matters into their own hands and go on a search for cleaning supplies (almost as hard as finding a janitor), then clean up the mess themselves. All this, before clinic even starts. Welcome to Kiboga.

Kiboga is a town of 16,000 people, about 120 km northwest of Kampala. For this research project, I will be spending half of each week here with my Fogarty twin. We come up on Tuesday morning, work for 3 days, and return Thursday night. Eventually I'm going to get used to the aspects of work and life here that make it so interesting, frustrating, and exciting. But before that happens, let me record a few early observations:

Kiboga District Hospital

1. The Kiboga public hospital takes all comers:  healthy (rare), sick (many), rich (none), poor (all), and even animals (as residents, not patients). I would say that there are more chickens than doctors in the hospital. Infinitely more, I should say, because isn't it true that any number divided by zero equals infinity? Yeah, that's right, ZERO. I have yet to meet a doctor here (except for those in our research team), even though the government employs 4 of them to work in the hospital full-time.

Chicken at the back door

2. Health privacy exists at a minimum. The study clinic is set up for interviews to be conducted 2-at-a-time in a shared room, with physical exams behind a screen - however, we often have so many patients that exams have to be done out in the open. For a generally modest society, it’s remarkable that patients are comfortable baring their breasts, exposing their rashes, and revealing their pain in front of anyone who happens to be in the room. The upside is that there is a tremendous amount of camaraderie among the patients. I hear constant pep talks taking place in the waiting area, and patients share rides to and from clinic. It's a case of confidentiality down, community up.

My research "twin" and the study nurse, hard at work in our office/clinic
(Obama's got our backs)

3. The shared space does allow for some amazing clinical experiences on my part. I was the first to feel a patient’s swollen axillary lymph nodes, signs of likely lung infection or breast cancer. I inspected an invasive mouth cancer, a thick fungating mass on one side of a woman’s tongue. The smell was so bad that the whole room smelled like rot whenever she opened her mouth – I had never smelt a cancer before. I held the hand of an AIDS orphan, who came by (alone) after school to get treatment for her infected salivary glands. She didn't flinch when we stuck a syringe into her cheek and sucked out 10 mL of fluid, and she just bowed her head in acceptance when we asked her to come back for another poke next week. I talked with a woman dying of AIDS. Young, emaciated, beautiful, in a wheelchair pushed by her robust but wrinkled mother, she embodied more paradoxes than that Alanis Morisette song, “Hand in My Pocket”.

I didn't photograph our patient, but here's another chicken
(I'm beginning to think we should have a poultry immunization program)

4a. It is inspiring to see how much a doctor at a desk, with a stethoscope in one hand and a pen in the other, can do for a sick patient. Medication prescriptions, counseling, and continuity of care keep a lot of these patients alive – even well. At the end of a clinic day, small bags of groundnuts, tomatoes, and sugar cane left behind by our patients show their gratitude for these free services.

4b. On the other hand, it is upsetting to admit that good intentions and years of medical training sometimes cannot overcome the systems issues. Yesterday our doctor performed minor surgery in the clinic - cut and drained spoonfuls of pus from an abscess in a young lady’s leg - only to stop at the point of closing the wound. We didn’t have sterile gauze. How do you keep an opening from getting re-infected, if you can’t pack it with clean material? We searched high and low and thought of many possible replacements, but there is no substitute for a little 4x4 inch square of cotton that comes in a sterile wrapping. Probably costs pennies; I know we throw out handfuls of them in a single procedure in the States. But that didn’t help the lady with the hole in her leg. Eventually the doctor just leaned back on the paint-chipped wall, her bloody gloved hands held high, idle, unable to properly finish the job. It was the look of defeat. We ended up putting on a loose bandage and sending the patient home with antibiotics, to fight the infection that almost surely would come back.

...This reminds me. I haven’t even mentioned that the hospital operates with no running water, power about 50% of the time, and intermittent network access for internet and faxing capabilities. Thank goodness for bottled water, fire, batteries, cell phones, and wireless USB sticks! Some combination of Stone Age and Digital Age inventions keeps this place functional.

5. Outside of our clinic space, a few formidable personalities run the entire hospital. There is one extremely maternal nurse – big-bosomed and big-boned, with a white cap perched on top of her head, just like you would like to imagine her! – giving those motivational speeches in the waiting area. Her most recent topic was couples treatment, with a message directed at women to bring their husbands in for care. (Women outnumber men in ART clinics because they are more willing to seek treatment, but they often have to come in secret. I am told that a husband may blame his wife for his HIV infection if she suggests that they need treatment. Furthermore, if she or her husband has multiple partners, she may be constantly exposed to different HIV strains and at risk of developing medication-resistant infection. If she asks her husband to use condoms, he may accuse her of infidelity - even though the man is MUCH more likely to have multiple partners. And remember that most of the women are completely dependent on their husbands for financial and social stability, so it's not so easy to go against his will. The result is that many of the women - even those who are married, sexually monogamous, and on ART - remain in very risky sexual relationships.) There is one palliative care worker, an old man who recently realized his passion for this work and got certified, who can be found carrying meals and smiles to the bedridden. When he has free time, he sifts through the waiting patients to bring the sickest ones to our attention:  starving babies, a schoolgirl failing ART, a possible malignancy. And, of course, I have to get back to the research group. Our team of 6 manages hundreds of patient files, knows each subject individually, and bravely cleans up vomit when no one else will do the job. I am ever impressed with their sense of purpose (and sense of humor), hard work, and both practical and people skills.

Outside the hospital, Kiboga town awaits. See, it has the look and charm of an extended rest stop:

Very average roadside view

Into the jungle

There are about 100 tiny shops (well, mostly bars) situated along the paved road (that connects Kampala to Hoima, an oil town 70 km farther northwest), plus a few guesthouses and a hospital. Rough dirt roads snake down the main road to a row behind the shops, past a few residences, and into the jungle-ish forest, where most of the people live in villages. Green rocky hills circle the horizon, and a huge sky spreads overhead. I don’t know why – maybe it’s the low man-made structures, or could it be my enhanced sense of isolation? – but the sky just feels SO BIG here. Looking up, I think I can see different cloud formations at every layer of atmosphere, from thick whipped cream peaks blanketing the hills to wispy strands reaching for the sun. 

View from the balcony of my bare-bones guesthouse in Kiboga

When I snap out of my celestial wonder, the main road offers a parade of sights. There’s a man single-handedly rolling his truck to the nearest fuel station, since he ran out of gasoline 1 km back. Then, look, a motorbike with 2 live sheep (large! the size of small cows!) strapped on back. And finally, always, a gaggle of kids who find me much more interesting than the hills, sky, and traffic that so fascinate me. My soundtrack through Kiboga is a chorus of “Mzungu, hi! Mzungu, bye!” as they chase and follow me down the street. I feel a little ridiculous, a little celebrity, a little Pied Piper.

Even though “Mzungu” can be/feel pejorative (especially when barked by grown men sitting in in the shadows of Kampala), the Kiboga kids’ song is not unfriendly. Full of smiles, it is a joyous and innocent tune. Like everything else – at first strange, now it is growing on me. Though I'll never quite blend in, I believe that I can start to feel at home here. Yes, really. Welcome to Kiboga!

Now that I’ve written too much, let me wrap up the night in my favorite Kiboga fashion. I am off to devour a passionfruit (or four) for dessert, then retire to my dark (generator off) quarters, hours before a normal bedtime. Oh, this complicated and simple life!

Sulabulungi.