MSF doctor Emily Wise blogs from Karakalpakstan, Uzbekistan, where MSF is working to treat tuberculosis patients.
Uzbekistan © Emily Wise
Emily Wise is a British doctor working with Doctors Without Borders/Médecins Sans Frontières (MSF) on tuberculosis projects in Karakalpakstan, Uzbekistan. Read more from her field blog here.
My alarm wakes me up at six and Murusia immediately begins celebrating the event by jumping onto my bed and purring loudly into my left ear. Within five minutes I’m sat on my bedroom floor, cat on lap, coffee in one hand, instruction manual in the other, and wearing giant headphones, teaching myself how to use an audiometry machine. The injectable drugs we give our multi-drug resistant tuberculosis (MDR-TB) patients, kanamycin and capreomycin, have the potential to cause permanent damage to their hearing. So, I have to give my new district Shumanay the capacity to monitor for "ototoxicity." I have the machine down in 15 minutes, easy. Twiddling the frequency and decibel knobs, I find using the machine is not wholly unlike playing "Battleship." By the end of the day I’ll have trained my Ministry of Health (MoH) doctor Tileubergen how to use it, we’ll have practiced on my eager guinea-pig translator Yesemurat, tested two patients, and have the machine safely installed in Tileubergen’s office.
At eight I hear the engine of my Toyota Land Cruiser pulling up outside my house and Murusia is crestfallen at being lopped off my lap. The following hour and a half, spent bumping along in the back of the car to Shumanay, is our office time. From this mobile Shumanay HQ I leaf through fistfuls of sputum and blood results and weigh up treatment options whilst Yesemurat rings our MSF and MoH colleagues with plans and instructions: which patient needs to submit another sputum or have pre-treatment counseling, which health post will need a DOTS corner established...
We’ve only just commenced our operations in Shumanay, so we are inundated with cases. I’ve recently invested five days training local GPs and emergency doctors how to spot TB patients and send them our way. First today we are returning to the house of one such patient with her sputum results. I have brought with me four other MSF and MoH staff to give them on-the-job training. Gulzabira [patient name changed to protect anonymity] is 28 years old. Her father-in-law developed TB in 2008 and as Gulzabira was a trained nurse it fell to her in the family to care for him. By the end of that year her father-in-law was dead and she too had TB. With no good TB program in place in Shumanay until now, Gulzabira has spent the last six years taking whatever medications she could get her hands on in a scattergun fashion and now she is a skeletal 36 kilograms [about 79 pounds], has a disabled respiratory system, and is heaving with drug-resistant TB. She is holding on by a thread. I utilize my newly acquired audiometry skills and my heart sinks as I plot out her inability to hear high frequencies. Her blood tests also show her kidneys are only operating at 50 percent. Both findings are presumably a result of years of pointless streptomycin injections (98 percent of the tuberculosis here in Karakalpakstan is streptomycin-resistant, but it continues to be dished out to all and sundry).
I tell it to Gulzabira straight: if she continues sporadically taking non-DOTS treatment she will never ever be cured and her TB will kill her. But, if she joins our program and sticks with it, there is a reasonable chance we will cure her. But there’s no guarantee. I tell her it's time to close the door on tuberculosis and get on with her young life, but it will come at a cost: two years of handfuls of wretched tablets a day, plus injections, and she will hate me for it. To this last statement she shakes her head vigorously . . . but she ain’t tried what I’m offering her yet.
And then Gulzabira does something that I realize I have not yet seen a patient do since I arrived in Karakalpakstan four months ago. She weeps. Well, she’s spent the last six years living with the stigma of TB, desperately trying to conceal it from her community, in terror for her life and frustrated at every previous shot at a cure, so fair enough. I wrap my arm around her and tell her I know its not fair, that she didn’t do anything to deserve this, and that I’m sorry she’s been so unlucky, until I realisz if I carry on speaking I’m no longer going to be able to stop myself from crying too.
So tomorrow she will start treatment. I close her file and her prescription for "reinforced-MDR-treatment" at the top stares back at me through the clear plastic cover. Her tale is drenched in tragedy, but my heart is soaring. "We did that," I say to Yesemurat, "we made that happen." Our first patient in Shumanay to be started on ambulatory drug-resistant treatment. Our blood, sweat, tears, and their sputum, and it's paying off. What an achievement.
There’s no time to linger and we head back to the Shumanay TB inpatient department (IPD) to continue our onslaught – assessing all the patients, getting them on the right treatment and (given that the IPD has negligible infection control) getting them the hell out of there. We go through each patient’s results: drug-resistance is the norm, not the exception. By the end of the week 10 more patients will be all set to commence DOTS-treatment and their local health care posts equipped to administer it under our watchful eye. Tileubergen, Kural, our councilor, and I sit with each and every patient, one-by-one, talking them through their treatment, advising them of the side-effects, trying to ingrain in them the dangers of defaulting, answering their questions. I could repeat this patter endlessly, morning, noon, and night, never tiring of it. Anything I can say to improve their chances of adhering.
Everyone is desperate for lunch but an ambulance suddenly appears and is inappropriately trying to dump a new patient on the steps to the IPD, declaring he has TB and has to be admitted. Tileubergen pleads with the ambulance doctor that he has only had symptoms for two days and has flu, but if he is admitted to this cesspit then he really will have TB. I reassure the protesting ambulance doctor that we will take the man’s sputum to be sure and then, forever seizing even the slightest opportunity to improve TB services in Shumanay, I tell her that the ribboned gauze she is wearing over her face will not protect her from inhaling bacilli, offer her a box of our respiratory-protection masks, and ask her if she would like to attend one of our TB training sessions. The ever-loyal Yesemurat agrees lunch can wait.
And so we plough on. At the moment, it feels as if there’s no limit to what we can achieve here. I cannot think about the bigger picture right now, that only 19 percent of those infected with MDR-TB in the world currently gets treatment, and that our efforts are just a drop in the ocean.
The international president of MSF, Dr. Unni Karunakara, flies in to visit our program in Nukus. He is both reassuringly grounded and utterly inspiring. He tells us we are giving back our patients their dignity. I make sure I sit next to him at dinner but then proceed to embarrass myself by failing to say anything intelligent. For me this is on par with having dinner with Barack Obama.
By the end of the week, I realize that I cannot shake off a cough I developed following a recent upper respiratory viral infection. It is relentless. I’ve never had a cough like this before. And I’ve lost four kilograms in weight. Friends and family look concerned as I hack away whilst Skyping. I start counting the days of the cough’s duration. Day 11, day 12, day 13 . . . On day 14, pretending to laugh it off, I tell my colleague Maartje about my worst fears and we agree I’ll get a chest x-ray and test my sputum. That night I wake myself up coughing at 3:00 AM and then lie in bed paralyzed with neurosis. In the morning I tell fellow doctor Ramona to get ready to give me kanamycin injections in my arse for the next eight months. In the car on the way to my chest x-ray I ask my colleague, who also has symptoms, if it would be appropriate to blog about our predicaments. We crack up laughing that my blog page will have to be transferred from the "MSF field blogs" site to the patients’ diary site "TB and Me."
I ponder whether I’ll regret having come to work in Karakalpakstan if I do test positive. And I resolve the answer is no. Our cause is a worthy one and I stand shoulder-to-shoulder with my patients. But maybe this resolve will fail two months into treatment, when I am crippled by relentless tinnitus and renal failure from my kanamycin, psychosis and seizures from my cycloserine, and fulminant hepatic failure from my pyrazinamide. That evening Andrey, our head of laboratory (and also my housemate, so he clearly has a vested interest in the result) sends me a text with lots of smiley faces saying that my sputum is negative for TB. I celebrate with an early night, catching up on anxiety-lost sleep.
I Skype with a friend at home who tells me about a great drunken night out he had with a girl who works in advertising, who could get away with expensing cocktails on her work credit card. Surely that’s the greatest job in the world, he asks rhetorically. I contemplate my week and decide it's not. For me, free drinks can’t quite compete with Gulzabira’s treatment card, evacuating that IPD, and meeting Mr. President.
So, I haven’t (yet) caught MDR-TB. But I have caught an all-consuming infatuation for this noble, honorable, fearless, effective, beloved organization to which I now belong. I have the MSF virus. I have MSF. As far as I’m concerned, I have the best job in the world.
And I can mix my own cocktails, thank you.