Getting things in perspective this World TB Day

I am back home in London.

My mission away to Uzbekistan with Médecins Sans Frontières, working in a drug-resistant tuberculosis programme, has metamorphosed into just a handful of images that flash through my mind whenever I’m not distracted by more pressing matters.

Adventure officially over.

My morning commute is now spent sipping a latte and applying mascara, bobbing along on the London Underground, rather than suppressing chattering teeth on a white-knuckle ride in the back of a land cruiser. Gone are the basic facilities, the blue, Cyrillic Ministry of Health signs and the steady stream of emaciated patients coughing into their surgical masks. I once again work in a swish, teaching hospital in an extremely affluent area of this resource-rich, cosmopolitan city.

That hard-earned uniform of honor, my MSF T-shirt, is buried in a box in the attic. Instead, I find myself smartly dressed and surrounded by more ‘machines that go bing’ than I could shake a stethoscope at. I have assumed my old familiar role as a doctor on sterile, buttercup-yellow wards that should, to me, feel like a second home…but it all feels unnervingly alien. I used to belong here, but now I am not so sure that I still do…

Suddenly my two worlds-collide: our team has reached the room of one of the relatively few cases of multi-drug resistant tuberculosis (MDR-TB) to have been diagnosed in the UK. I pull on a respirator mask and it is bizarrely comforting, having worn them almost continuously for the previous year. I flip open the patient’s prescription chart…hello old friends: moxifloxacin, prothionamide, cycloserine…the hours I spent gently coaxing my patients to swallow you. My heart feels ready to burst with tragic tales from Central Asia. Tales of much loved patients. Always brave, always heroic, often smiling despite their predicament, each one fighting their own private battle until the end…Some still alive. And some now at peace, no longer tortured and tormented by TB, lying quiet in the ground.

But the ward round has already moved on. ‘It is such a bore treating MDR-TB,’ comments one junior member of the team, ‘the patients end up staying in forever.’ And I wonder when again I will be able to relate to my peers.

I had hoped my single stint abroad with MSF would get it out of my system, that it would scratch that itch for good, so that I could relax into a less disruptive life at home. But I cannot fake it. That feeling – when you have driven for two hours to what feels like the ends of the Earth, to see a patient…no, a human being…who had thought that they were forgotten and as good as dead…and you offer them treatment, you hold out that branch, where no-one else has – that hit of endorphins this experience gives you – well, that ain’t happening round here…

Friends, family, fellow MSF veterans all try to reassure me that this is just ‘readjustment’. No big deal. I’ll settle back in soon enough.

Or is it that I will just become numb again to working on the more sunny side of a world in disequilibrium? I flick on the BBC News as I get ready for work in the morning and am greeted with the horror of the aftermath of the Philippines typhoon. I then travel to work and plough all of my training and a huge amount of energy and resources into looking after a relatively small handful of very stable patients. What’s going on here? The life-saving tally is currently running embarrassingly low.

No, this is not just reverse culture shock that I am experiencing. I am feeling overwhelmed by the gross injustice that is the discrepancy between the need and the provision for healthcare across the globe. And this discrepancy is epitomised by the current epidemic of drug-resistant tuberculosis, death-marching its way across resource-limited regions of the world.

Here in London, we will perform an array of investigations on patients just to ‘rule things out’, whilst only one in five patients with deadly drug-resistant TB in the world can’t even access treatment. Where did we lose perspective? How did it become acceptable that we throw the book at those who ‘have’, whilst leaving those that ‘have not’ clutching at so little. Shouldn’t we take one collective step back? It is not that I would want to deny people in resource-rich settings good medical care – not at all – just shouldn’t we start aspiring to offer it to all? Should it really matter where you happened to be born? Shouldn’t we all become Doctors Without Borders? That evening I tell my husband that we are quitting our jobs and leaving on a plane with MSF within the week. He looks at me exasperated – he has had to bear the brunt of my ‘readjustment’ the hardest.TAKE ACTION! Please sign the TB manifesto

So…today is World TB Day. One year ago today I was in my MSF project trying to claw back patients that were clinging onto life. The crass drugs that are currently available for the disease meant that we were tragically only able to cure about half. The need was and remains immense. But MSF, amongst others are working sheer, bloody mindedly to turn this situation around. And we need your help. Please sign the MSF Access Campaign TB Manifesto, which we plan to present to world health leaders seven weeks from now, demanding they arm us in combating this disease. Please sign it, so that we can begin to get things into perspective this World TB Day.

A few weeks ago I fell asleep with the radio on and woke up just as an athlete was being interviewed. He was describing, in particular, being an Olympian. He reported it was like having a fire that burns silently and strongly inside of you and on occasion, when the time is right (in this case every four years at the Olympics) that fire roars and you show exactly what it is you have in you to give. And with that, for the first time, someone had put into words what it was for me to have worked for MSF.

So no, I’m sorry, but I have not yet quite scratched that itch.


TAKE ACTION!
Sign our petition calling for improved diagnosis and better treatment for TB.

Posted in Doctor, Tuberculosis, Uzbekistan | Tagged , , , | 1 Comment

Postcards (and phone-calls) from the edge

Maya makes a phone-call to Kural at the very last minute.

She is on the brink of killing herself and then (thank goodness, thank goodness, thank goodness) she phones our councillor Kural. I think she phoned, not because this was some half-hearted attempt, or a cry for help, but because her feelings were so alien to her and she just needed to check them with someone.

There are a few things that I know I will never, ever forget (one of these is Gulzabira’s death. And there are a few things for which I will be eternally and immeasurably grateful. I will always be grateful that Maya called Kural and did not commit suicide.

Kural knew our MoH (Ministry of Health) doctor Tleubergen was geographically closest to Maya at that moment and raised the alarm. Tleubergen arrived just in time to find Maya standing under a beam with a chair placed under it.

So close.

Too close.

We immediately assemble a ‘crisis’ team, including our two new MSF psychiatrists and by the evening Maya is safe. Safer. We stop her drug-resistant tuberculosis drugs, put her on the best anti-depressant we have available and admit her to the safest place we have: our TB in-patient department (with round the clock, albeit, not psychiatrically trained, nursing staff). The duty MoH psychiatrist visits, but says Maya will not qualify for admission to the psychiatric hospital as she did not actually get as far as the physically attempting the suicide, nor is Maya floridly psychotic. I cannot quite believe this qualifies as a specialist opinion nor a sound operational policy, but I am not about to fight to get my patient committed to an institution of whose quality I know nothing.

I check my feelings.

I am really stressed.

I phone my MTL (medical team leader) to update her about the events, but soon realise my rambling stream of consciousness must have her not worrying solely about the psychiatric wellbeing of my patient. Could I have managed things differently…better…earlier? Maya had turned up at Tleubergen’s house last week and told him that for the first time in her life she had the desire to kill herself. I rushed to see her then, but she seemed okay. She was making good eye contact and giggling with me, making positive plans for the future about wanting to learn to speak Russian and told me she did not mean what she had said and that she regretted it. But I was falsely reassured by these pick-ups we’re trained to look for in medical school. Falsely reassured because two months ago I had started her on a cocktail of drug-resistant tuberculosis drugs, including cycloserine. Cycloserine is a filthy, filthy drug with the potential for apocalyptical neurological and psychiatric toxicity. From my experience, the psychiatric toxicity of cycloserine does not display itself with typical signs and symptoms of depression. Instead, it is as if the drug suddenly pops harmful thoughts into the heads of our confused and bedazzled patients, who then feel overwhelmingly compelled to act on them. And then, like a bad dream, within days of stopping cycloserine and starting an anti-depressant these feelings seem to evaporate. But, we have no choice at present but to prescribe regimens containing cycloserine, because we currently have no better drugs available.

My previous nasty encounter with cycloserine was in March, when one of my patients, with no known previous aggressive behaviour, nearly beat his wife to death, two months after being commenced on the drug.

Furthermore, the gruesome shadow of a few ‘successful’ suicides in recent history hangs over our project.

There can be no denying that other social and psychological stresses contribute to these events. The stigma of being a TB patient, the prison sentence of the prolonged pill-burden and the noose of potentially succumbing to the disease hangs over all our patients every second of every day.

Plus it appears that patients with psychological issues are most vulnerable to cycloserine’s dirty little tricks. Another of my patients, who had suicidal ideation three months after starting cycloserine, is an alcoholic. Maya experienced a desperately difficult and tragic early adulthood (which I do not want to divulge here for fear of betraying her identity).

In fact, I knew Maya was high risk for cycloserine from the start – I inked this in her notes the day we started her TB treatment when she confided in me her personal history. But when I first found Maya effectively waiting for a slow and painful death from drug-resistant TB, she had already exhausted most other TB treatment options and I feared that without cycloserine, her TB regimen would be too weak and would not work.

Back in the office I share stories with the other doctors. One colleague tells me her patient turned up at the DOTS [Directly Observed Treatment, Short-course] corner last week with ligature marks around her neck asking to borrow a rope. Another colleague has also just had another near miss with a patient seemingly intent on killing himself and she now looks like she just needs to spend the next two weeks lying on a beach. But she cannot. We need to plough on. There are no real other safety nets here: if our little team misses a trick, the consequences could be fatal. It is quite a burden of responsibility we carry, even if we are qualified doctors, trying to keep everyone alive whilst attempting to preserve our own mental health.

The morning after the evening before, I sit outside in the sun with Maya on a topchan and we talk. She says she has not thought of harming herself again since we found her yesterday, but then states that she is so knocked out by the drugs we have now put her on that she is struggling to keep her eyes open, let alone think. I tell her that I almost cannot express my relief that she rang Kural when she did and that I would be have been beside myself if she had killed herself. She asks me if I can learn from her case and if I will share her stories with others and I agree I will. I apologise to her that I did not stop her cycloserine the day she first turned up at Tleubergen’s house. She shrugs and asks me when she can start taking her TB drugs again because she was rather enjoying no longer having a cough. And I wonder how and why it came to pass that us two young women are sitting here in the sun talking together, both trying to cope as best we can with immeasurable millstones around our necks, rather than drinking cocktails and reading trashy magazines together.

And in the end it boils down to the same thing. Every. Single. Time. I could practically cut and paste my concluding paragraph from all my previous blogs here once more: our drugs stink. Once more they have taken one of my beloved patients right to the edge of life and again they have me doubting my own strength and abilities. I reiterate, dear pharmaceutical industry and governments, I beg/implore/beseech you – put this disease on your agenda and give us doctors and patients what we so desperately need: new compounds for drug-resistant TB. Because really, this great burden of responsibility should not weigh on my stressed-out little shoulders, nor on those of my colleagues. But on yours.

You can read more about the MSF Access Campaign for new TB drugs here: http://www.msfaccess.org/our-work/tuberculosis

You can access help (worldwide) if you are suffering from depression or anxiety by following this link: http://www.befrienders.org/directory

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The Darkest Hour

My favourite patient lies dying in my arms.

All of the sentiment expressed and my choice of terminology in the above sentence are painfully contrary to the place where all of my prior medical training is supposed to have brought me. The last thirteen years of my life have been dedicated towards turning me into a finely tuned and rational life-saving machine. I am not supposed to form emotional attachments to my patients or hold them passively and powerless while they die. I’m supposed to secure their airways, stabilise their blood pressures and attach them to life-support machines.

But this is the reality in which I find myself: my favourite patient lies dying in my arms.

Exactly one month ago, I wrote about Gulzabira, a 28 year-old former nurse, weighing just 36kg, with ‘chronic’, probable extensively drug-resistant tuberculosis (XDR-TB), who was our first to start on drug-resistant treatment here in Shumanay. Given her frailty and extent of her disease, I took to visiting her regularly at her home, checking she was okay and tolerating the drugs, maybe more often than clinically necessary. Each time we’d be greeted by her big grin. Her mother would grab my hands and beam at me with smiling eyes: we had come to help her daughter, to whom she was devoted.

On our last visit I asked my translator, Yesemurat, to take my photo with Gulzabira, my arm wrapped round her, her sweetly smiling at the camera. As we left her house I said to Yesemurat ‘As a doctor I’m really not allowed to have favourites, but if I was, she would be it.’

Now it’s Tuesday morning, 7:30am and I am called by Gulzabira’s general practitioner in a panic, ‘Please can we come, there’s something wrong.’ I call my Ministry of Health counterpart Dr Tleubergen and he leaves immediately for her house in an ambulance to retrieve her while I drive to the district. We meet at his recently evacuated, empty TB inpatient department (IPD). As soon as I look through the back doors of the ambulance it is obvious the situation is desperate. We carry her inside. She is drawing fifty breaths a minutes and unable to speak, her arms flail aimlessly and her chest is full of crackles on auscultation with my stethoscope. Her eyes roll back and she loses consciousness. Her mother spits on her face to try and revive her. I hold up her Chest X-ray Tleubergen had arranged en route: no pneumothroax, but the lung fields are obliterated by white fluffy shadows. She is in acute respiratory distress syndrome. She is effectively drowning. I bark a shopping list of drugs and equipment I need at the IPD nurse. She looks at me blankly then returns from the drug cupboard with one 500ml bag of fluid. TB drugs and empty beds is really all they have. And in Karakalpakstan, MSF is running an ambulatory, outpatient-based TB programme, and so we are really not equipped to care for such cases.

At this point in a UK A&E resuscitation room I would be in my element. I would feel in total control, issuing orders to nurses and juniors who speak the same language as me and who have had the same training, running tests, inserting lines, getting the patient intubated. But now, without the tools of my trade to keep my hands occupied, they feel horribly empty and so I hold onto Gulzabira’s left hand, stroke back the hair from her forehead with my other hand and whisper lies to her that she will be alright. I turn to Tleubergen and tell him what he already knows, that if we stay here she’ll be dead in the next fifteen minutes. I ask him to take us to the best and nearest clinical area with oxygen. We drive her to the district’s main hospital and bundle her in.

The two attending doctors rightly start protesting at our arrival: with our trademark respirator masks we are universally recognised as the TB doctors and our carried goods are highly infectious. But we have no time to negotiate – we pull Gulzabira into a side-room, close the door, open the windows and snap masks onto the faces of the doctors and nurses and I tell them we can debate infection control matters later.

I begin pleading with the hospital staff to bring whatever equipment they have. But not only is language a barrier (I am speaking quickly in a foreign language using many technical terms with which my translator is not familiar), but I am also trying to practise a medicine very alien to this hospital. At home, I have run such drills thousands of times with similarly sick patients to the extent I could do them with my eyes closed. But now it feels like I am trying to run through treacle. Why am I asking them for these drugs and equipment? This is not how they do things, they have there own very different protocols. It’s as if my hands are tied behind my back. It makes me feel physically sick to my stomach. We manage to locate an oxygen saturation monitor and put it on her finger – it reads 40%. Anything less than around 88% is incompatible with the brain receiving enough oxygen to survive. We locate a concentrator that can deliver a pitiful five litres of oxygen a minute and Tleubergen and I start ‘bagging’ her furiously.

Momentarily Gulzabira’s oxygen saturations hit 70% and she regains consciousness and she cries out, but they then rapidly plummet again. I ask for broad-spectrum antibiotics in case there is any super-imposed pneumonia, high dose steroids in case there’s any inflammatory process to be suppressed and frusemide as a desperate attempt to dry-out her lungs. But I know it’s futile.

Since I qualified as a doctor I have had a recurrent dream I have never before told anyone, probably because I am keenly aware of the underlying neurosis it reveals. It is always a variation on the same theme: I am in a public, non-clinical place and I witness a loved-one suffer a cardiac arrest. I try to run to them but find my legs are paralysed. I try to touch them but I cannot move my arms. I try to shout out for help or phone an ambulance but no noise comes out of my mouth. And then I wake, relieved that I was only dreaming. Now, standing by Gulzabira I am living out my dream. We have done the hopeless basics and anything more sophisticated is beyond our capacity. Her parents stand, similarly helplessly, in corridor, silently sobbing.

For a fleeting nanosecond an instinctive desire rises in my belly, something I never, ever imagined I could wish for as a doctor. I wish that she would just die, to end the ordeal. Gulzabira starts to move her arms in a stereotypical fashion we call ‘decerebrate posturing’, which indicates severe hypoxic brain damage.

Well what was I expecting? I signed up to MSF didn’t I? Did I really think I wasn’t going to be faced with this scenario? Did I really think it was all going to be plane sailing or like at home in my UK tertiary referral hospital intensive care unit? This is the reality of medical care in these settings. Or they wouldn’t call us ‘Doctors without borders’, they would call us ‘Doctors thanks for showing up, but you really needn’t have bothered we’ve got it covered.’ In fact, for many of my MSF colleagues in other, more ‘emergency’ projects, similar scenes will be a daily occurrence. I have seen enough footage of lonely MSF doctors hanging up hopeless drips for unconscious, skeletal, near-corpses in refugee camps. I am lucky to have made it five months here without a previous similar episode.

In the West, we never see such cases of chronic, long-standing tuberculosis, so TB patients tend to sail through treatment. It is an eminently curable condition. But Tleubergen tells me he is familiar with such cases, as chronic TB is all too common in Karakalpakstan: after so many years of being diseased sometimes the lungs just cannot cope any more and decompensate. And these patients can never be saved.

Driving home from the field that evening, I look on my phone at the picture of me with my arm around my dead friend, and I realise I have lost any confidence in my ability to help anyone, any confidence I have in this programme, any desire to be here in this country and that I am a terrible and useless doctor.

But as the clichéd old saying goes, ‘the darkest hour of all is the hour before the dawn’. Every death from TB is avoidable. Every death from TB is not due to a medical reason. Forget for a second about the technical nitty-gritty detail of tissue necrosis and compromised gas-exchange. In this modern age, all deaths from TB boil down to a lack of commitment from the international political community and the pharmaceutical industry to address this disease. I cannot pretend I can draw any comfort from Gulzabira’s death. But maybe her story will spur you to join MSF in its call for universal access to good TB treatments: www.msfaccess.org/our-work/tuberculosis? It’s still not yet too late for hundreds of thousands of other TB patients.

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I have MSF

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 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 battleships. 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 crest-fallen 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 counselling, which health-post will need a DOTS corner established…

The team © Emily Wise

 

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* 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 programme in place in Shumanay until now, Gulzabira has spent the last six years taking whatever medications she could get her hands on in the scattergun fashion and now she is a skeletal 36kg, has a disabled respiratory system and is heaving with drug-resistant TB. She is holding on by a thread. I utilise 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%. Both findings are presumably a result of years of pointless streptomycin injections (98% 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 programme and sticks with it, there is a reasonable chance we will cure her. But there’s no guarantee. I tell her its 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 realise 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 of 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 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 realise 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 its paying-off. What an achievement.

There’s no time to linger and we head back to the Shumanay TB in-patient 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 councillor 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% of those infected with MDR-TB in the world currently gets treatment, and that our efforts are just a drop in the ocean.

MSF international president Unni Karunakara. © Emily Wise

 

The International President of MSF, Dr Unni Karunakara, flies in to visit our programme 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 embarrass myself by failing to say anything intelligent. For me this is on a par with having dinner with Barack Obama.

By the end of the week, I realise 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 3am and then lie in bed paralysed 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.

MSF

My sputum bottles © Emily Wise

 

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 its 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, honourable, fearless, effective, beloved organisation 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.

*Name has been changed to protect anonymity

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You cannot save the world…

For the first time since I’ve arrived in Karakalpakstan, and I suspect the last, the weather is unexpectedly and strangely reassuringly reminiscent of that from my home of England. It’s six degrees centigrade, the ground is wet and littered with still puddles and the sky is grey and overcast, like a giant duvet wrapped over me – an odd source of comfort in this foreign land. Spring is finally upon us. Tomorrow is Nowruz, Persian New Year. This Sunday, 24th March is World TB Day. A little prod to the international community: do not forget us, things are desperate…we are desperate.

World TB Day

The Shumanay team are invited to celebrate Nowruz with the community ©Emily Wise

 

My nurse, counsellor, translator and I make the long drive to our district of Shumanay. Today we are venturing into the Shumanay Tuberculosis Inpatient Department (IPD) for the first time proper, to begin the almighty task of trying to test and treat all if the TB patients in the district. Our programme’s architect and mastermind, Philipp, visited us in the field last week. ‘You cannot save the world,’ he told me one evening over a beer, ‘you can only try to make it a slightly better place.’ The IPD is as good as any a place to start.

We pull into the stand-alone TB IPD compound. It’s a shabby one-storey block that almost looks derelict, with, bizarrely, some kind of muddy pond with viewing shack in front of it. Not satisfied with TB, is the plan to try and breed cholera too? We climb out of the car and gaunt, blank faces with black backgrounds stare out at us through the curtainless windows, like someone has recently visited with a ‘Hope-Hoover’. A tiny, very handsome, chocolate-coloured puppy with bright blue eyes and splashes of white on his muzzle scampers up to me. He is just a baby, clearly homeless and is asking for love and food scraps. My new translator, Yesemurat, is fiercely protective of me and clearly familiar with the pathetic compassion of female aid workers: ‘Don’t stroke him, you don’t know what infections he’s got’. True. But then who is not infectious amongst us here? I am currently snotty and sweaty, awash with some upper respiratory tract virus, and my colleagues edge away from me when I accost them in our office corridor.

My new little-friend © Emily Wise

My new little friend © Emily Wise

The patients awaiting my arrival inside are so brimming with deadly, almost impossibly hard to treat mycobacteria, they could be used as biological weapons. I see a flash of the puppy’s belly, which is sporting a large crop of mange. In another life, born in another country, this puppy would have been spoilt and loved, with a gleaming coat and expensive veterinary fees. Born in different circumstances the waiting IPD patients could have been teachers or nurses, proud parents, the productive little consumers of which western governments are so fond. They just got unlucky. Puppy and patients alike, just born under the wrong stars. Dealt a lousy hand. I’m in a ghetto for unlucky souls, infected, infective, cross-infecting each other. Socially unacceptable and stigmatised. A Monty Python scene plays out in my head, where victims of the black-death are cast onto a wagon and one cries out that he’s not yet dead. Well they are not bloody dead yet! So I go to work. I snap on my mask, stride in, throw my stethoscope round my neck, open all the windows, chuck my bag in the corner and greet my new brother-in-arms, Ministry of Health doctor Tileubergen, thoughtful and knowledgeable, but until now virtually resourceless. ‘Let’s start with the sickest first and work our way through.’ I say and he nods.

Virtually all the inpatients have had TB for around a decade. They’ve dabbled with this and that TB drug, that has saved them from dying, but they have never had proper, full, appropriate treatment so have not been able to recover. They have been held in purgatory for years. Each story is the same: whenever they get sick with fevers, wasting and coughing-up blood, at least once a year, they are admitted for three to six months to this cesspit holding-bay, and are stuck on whatever TB drugs are available, sufficient to pull them back from the brink but never enough to cure them, and all the while driving their TB to become more and more resistant. Not to mention the cross-infection problem that accompanies housing TB patients communally.

Alisher is the first to sit opposite me. On first glance he looks okay. Then I realise he is wearing five loose tops and jackets on top of each other, which artificially exaggerate his bulk. He is severely wasted, a bag of bones and just walking into the room leaves him gasping for air. I meticulously pick through his history. He’s had a bit of everything, years of first line-drugs interspersed with a splash of second-line drugs when he’s managed to scrape the money together to get to the capital. He is going to be really tricky to treat. I ask how he got his TB and if his family are supportive of him. He tells me his family wanted nothing more to do with his brother when he developed TB in 2005, so Alisher loyally and single-handedly cared for him, until he died. And then Alisher too became sick with the TB, so his family now want nothing to do with Alisher. This institution is now his only home. I tell Alisher I think he’s too sick to wait long, I’ll get my nurse Sarbinaz to drive his sputum to our laboratory in the capital now, so we can get a resistance pattern and get him onto the right regimen as soon as possible. But I warn him the path ahead will be tough and I predict he’s going to need at least two years of committed treatment. I cannot promise him it will work, but it’s the only chance he has got. ‘Whatever you think is best’ he says expressionless. Alisher is clinging onto life but clearly let go of hope a long time ago. After I have finished examining Alisher, Kural my counsellor sits and gently talks with him, and Sarbinaz shows the MoH nurses how to collect his sputum and take his blood, a little conveyor belt of care.

Next is Gulnara, her lungs are full of TB, and again, given her drug history, I fear she may be extensively drug-resistant. She pleads with us: those two months of Kanamycin injections were seven years ago, so long ago, surely that will not make a difference now? But TB has a nasty habit of remembering these fleeting events. Gulnara then tells me she has also severe pelvic pain for months. She’s shaking and appears on the verge of crying throughout the interview and stares at the floor. My translator is male so I am torn between needing to ask her personal questions and causing her further shame and embarrassment. I usher the men out so I can examine her and as the door closes and we are alone together she suddenly blurts out a stream of sentences, presumably all of her symptoms all her worries, desperate to confide in a female doctor. But I’ve barely a word of Karakalpak so I am helpless to know what she is saying. I make a mental note to source a female translator for my next visit.

And so we proceed, patient after patient, one-by-one, Tileubergen and I. We document each history, listen to crackly lungs, feel rubbery lymph nodes, pour over X-rays and discuss each case in turn – what we will do, a strategy for each patient. Rumours in the community about a new doctor with new tests and treatments has smoked out other ‘chronic TB’ suffers from the area, who hover outside waiting to be seen. I am in my element. Doctors only ever feel truly at home neck-deep in pathology, problem-solving and trying to fix people. At the end of the day, tired but satisfied, we fall out of the IPD and pull off our masks. The boys hungrily smoke cigarettes and I, ignoring Yesemurat’s pleas and protests, pet the little puppy.

I lie awake that night unable to sleep, running over the abundance of things I need to do in my head. A knife hangs poised over these patients. For many of them our treatment is their last chance saloon, if we get it wrong, miss a trick, let them fall off the wagon, then they are back on the death-cart. I ponder the logistics of getting a mite-infested canine from a rabies-endemic state to my mum’s flat 3300 miles away. But burning myself out is not going to help anyone, and finally I allow myself to drift off to sleep.

Sunday 24th March is World TB Day. So, Happy TB Day to you. The MSF Access Campaign (our compatriots, pressing for action and new life-saving drugs) are marking the occasion with the launch of the TB-manifesto, a joint plea from patients with drug-resistant TB and their healthcare providers, myself included, pleading for better treatments for this deadly disease.

The manifesto lists some pretty sobering facts: it currently takes 14,600 pills to treat one patient with DR-TB, stood end-to-end, the equivalent to the height of the Golden Gate Bridge. 81% of people with DR-TB don’t get effective treatment, and of the 19% that do only half are cured.

We need better treatments now.

Please read the manifesto at http://www.msfaccess.org/TBmanifesto/, please show your support. Please, for Alisher, for Gulnara, for all the other patients in the Shumanay IPD, for the three-hundred other chronic TB patients in the district, for the half a million of cases round the world, for me. You cannot save the world. But you can try to make it a slightly better place.

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I Heart Shumanay

I miss our monthly staff meeting because I am in the field visiting two sick patients that I am worried cannot wait. When I return to the office, I am greeted by a smiling Marielle. Marielle is a brilliant and experienced French nurse and as she has spent twenty years working in England, including for the Health Protection Agency, we are tuned-into each other’s sense of humour. ‘Looks like we’ll be together in Shumanay,’ she blurts out, ‘they announced it in the staff meeting!’

So, my fate is sealed: I am opening Shumanay.

Up until now, my position in the Karakpakstan project has been as the doctor in the Khodjeily district. I took the baton in the short run-up to our handing Khodjeily back over to the Karakalpakstan Ministry of Health (MoH). Already by the time of my arrival, things were running pretty impressively in Khodjeily, and at times I have felt frustrated that there has not been a great deal for me to do. All of the hard-graft had already been done by my predecessors: doctors Jan (from what I can ascertain, some kind of Canadian medical God) and Johanna (an organisational guru). So, by the time I arrived in Khodjeily there was little left for me to do. No heroic lifesaving. No stamping my mark. No making a gigantic difference to rapturous applause. Great for the programme. Great for the patients. Khodjeily is a real success story. But for me, working in Khodjeily has always felt akin to sleeping with someone else’s husband.

The ladies receive flowers from the Khodjeily MoH at the day of handover © Emily Wise

 

In the car, in between clinics, I tell my translator Murat of my frustrations. He replies by quoting Abraham Lincoln: ‘Give me six hours to chop down a tree and I will spend the first four sharpening the axe.’ I am increasingly coming to view Murat as a Mr Miyagi or Yoda figure in my life. And so during the day I undertake my supervision duties in Khodjeily and in the evenings I pour over the TB literature, learning and preparing as much as I can. I sharpen my axe.

And now my time has come: I am handing-over Khodjeily and opening the district geographically beyond. Shumanay is virtually uncharted territory for us: I believe MSF last ventured there in 2003. How many cases of TB will there be? How many will be drug-resistant? What is the state of TB-care in Shumanay? I am granted an MSF dream team for the job: joining Marielle and I will be our national nurse, Sarbinaz, and counsellor, Koral, both of whom are industrious, kind and capable. We will be starting from scratch. Shumanay will be our baby.
We travel the hour and a half to Shumanay for the first time and survey the environment. It is similar to the rest of Karakalpakstan – flat, barren and parched plains without undulation as far as the eye can see, small shack houses and Lada cars kept just about road-worthy since Soviet days. But it’s even more remote, rural and sparsely populated than I have previously experienced. I can practically hear the untreated mycobacteria TB bacilli singing to me from the houses. This is a fine land.

My pocket vibrates as my phone receives a text: ‘Welcome to Turkmenistan, roaming charges apply…’ We are right on the border.

Marielle catches me grinning and laughs at me. I tell her I love Shumanay and that when I get home after my mission I’m going to buy a kitten and call it Shumanay. “Lets talk again in a month and see if you still love it,” she chortles and then does an impression of an exasperated me, pulling out my hair, screaming ‘I hate Shumanay!!’ But I don’t hate Shumanay, I already know that I heart Shumanay.

I meet for the first time one of the three MoH TB doctors in the region, Tileubergen. He has olive-green eyes, a striking contrast to his handsome dark Uzbek features, and he smiles a lot. He is the Karakalpak George Clooney. He takes me to see a few patients he is worried about. One patient tells me in the local language, via Murat, that he is on 25mg of amitriptyline for depression. “That is a pretty old-fashioned drug and too low a dose,” I comment to Murat. “I know,” says Tileubergen, ‘but we do not have mirtazapine available locally and that is the dose the psychiatrist wanted to start. I know it is too low.’ Bingo! My MoH doctor speaks some English AND he knows the correct dose of amitriptyline. I told you Shumanay was a great place.

The Shumanay nurses welcome us to their inpatient department © Emily Wise

I take Murat and Tileubergen for lunch at a café and we wolf-down dishes of hamburger patties with runny fried eggs on top (I pray to the God of salmonella to let this one slide, given the momentous nature of this occasion), all washed down with lemon-tea. Then, pen in hand, before I’ve even swallowed my last mouthful, I start to grill Tileubergen about the current TB resources in Shumanay. I ask Tileubergen how he feels about MSF entering his district. He replies: “we have been waiting for this time to come.”

Over the following days, my MSF colleagues and I perform our assessments to evaluate exactly what state Shumanay is in so we can start rolling out comprehensive TB care. There are no second line drugs, no proper DOTS corners, no infection control, no staff training on treating drug-resistant TB, no capacity to culture sputum or perform drug-sensitivity testing. The radiological provision for the entire district is one portable X-ray machine in a room less sturdy than a shed. They have an inpatient ward brimming with cases and over 300 ‘chronic’ TB patients in the community they cannot cure, presumably because they are infected with drug-resistant strains. Staff have been rationing a handful of respiratory masks between them, reusing them over months. Where to start? It’s a mammoth task. It’s huge. This will have me working round the clock… I am itching to go. My colleagues tease me for my enthusiasm and start addressing emails to me with ‘Dear ShuEmily…’

I Skype with my partner, Pete. He tells me he found a song called ‘Pompeii’ by a band called Bastille that he has taken to listening to, because its lyrics sum up his predicament since I left him for my MSF mission: ‘How am I going to be an optimist about this?’ And in many respects the line sums up how I cannot help but feel on so many occasions about our plight against MDR-TB. The problem is just so vast, so complicated, so without obvious solutions. The TB epidemic here is out-of-control, we have hopeless drugs, insufficient global regard for our cause and the threat that our work will collapse as soon as we try to leave. How on earth am I going to be an optimist about this? But for now I have Shumanay, my new cause, a new hope. And I heart Shumanay.

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And now for something completely different…

Ten ways to amuse and entertain yourself out-of-hours in Nukus, Karakalpakstan…

We <3 MSF

We Heart MSF (Toyota Land-Cruiser) – © Michela Feli Caigo

 

(1) Celebrate Christmas in Nukus: wake up to a totally white – and almost attractive – Nukus (when it was positively grey the evening before); go completely overboard with kitsch decorations; and prepare a Christmas dinner for colleagues from 16 different countries and six different continents, thinking nothing of splashing out US$40 on two tough birds (possibly chicken, totally worth it).

Say cheese

Xmas party © Emily Wise

 

(2) Identify friends who come from sunny climes (Tawhid – Bangladesh, Eleanor – Australia) and enjoy their delight as you build with them their first ever snowman.

DOTS snow-nurse

DOTS snow-nurse © Emily Wise

 

(3) Set aside an extra ten minutes every morning to dress for sub-zero temperatures: base-layer thermal socks, two thick arctic socks on top, two pairs of thermal leggings, fleece-lined trousers, two thermal long-sleeved tops, two T-shirts, a fleece, an arctic coat, faux-fur lined boots, a neck gaiter and my totally ridiculous, and pretty offensive, faux-fur hat.

(4) Receive a parcel from someone rooting for you at home. My dear mother, anxious to feel like she’s contributing to the cause and fiercely protective of her youngest child, has knitted and sent me a scarf onto which she has hand-embroidered the red MSF logo. Off-the-scale brilliance and highly coveted amongst my colleagues.

Hand-knitted!

MSF scarf © Emily Wise

 

(5) Three years ago our head of laboratory, Andrey, rescued a dying kitten from the street. He named her Mirusia. She is now the most celebrated and spoilt cat in all of Central Asia. Join the hoards of ex-pats who travel miles to dote on her, upload streams of photos of her onto facebook and make her jump on bits of string and dangling things. Her favourites are miniature pompoms.

 

Mirusia © Emily Wise

Mirusia © Emily Wise

(6) Bring in the New Year’s playing humiliating party games and dancing your socks off with the gorgeous national staff of MSF Nukus.

Happy New Year

New Year’s celebrations © Emily Wise

 

(7) Visit Manyesh, the Nukus indoor sports ground (complete with Soviet-style motivational slogans daubed on the walls). Run round the track, play volleyball or, if you are Trevor, practice your break-dancing and capoeira, all whilst watching the cream of Karakalpak sportsmen and women play football, hurdle and play ping-pong.

Manyesh

Manyesh © Emily Wise

 

(8) Watch a good movie.

Captivated

Logisticians Greg and Tawhid ©Tawhidul Hamid

 

(9) Attend Columbian Construction-Log Jorge’s Salsa Master Class. If only this blog-site could upload videos…

Salsa in the office

Salsa in the office © Emily Wise

 

(10) Be the first to welcome new ex-pat doctors to the programme with a beer in town (after verifying that, despite living in Australia for the last decade, Jay will still be supporting England in the Ashes this summer). Welcome to the project Animesh and Jay.

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Own goal

We make the short drive to the home of a patient that my Ministry of Health doctor tells me she is anxious to start treatment on as soon as possible. The patient’s flat is situated at the top of a 1984-esque Soviet-style concrete tower block, in a densely populated neighbourhood full of similar blocks. I am painfully aware that our arrival, in our signature MSF logo-adorned land-cruiser, will herald the neighbourhood knowing that there is a TB patient in their midst. MSF are only involved with TB care in Karakalpakstan and the local population do not refer to us as ‘MSF’, but as the ‘DOTS programme’, the World Health Organisation term for regulated TB care. The children playing in the courtyard suddenly forget their football to stare at us. Curtains twitch. Stood at the entrance to our patient’s block, I peer up into the dark, confined and under-ventilated stairwell. I decide that I do not want our risking entering without first pulling on our respirator masks. So we do so, in full-view of our onlookers. So now everyone knows.

We reach the flat of our patient, Aypara, which she shares with her son, daughter-in-law and their two children and are emphatically greeted at the doorway by her exasperated son, who leads us into her room. Aypara is in her 70s and it is immediately obvious that she is unwell and bed-bound. She coughs incessantly. I hold up her chest X-ray film to the window: her right lung appears to have been replaced in its entirety with consolidation (pus) and cavities (holes). She has had ‘chronic TB’ for eight years, due to a stream of inadequate treatments (too few drugs, for too short a time, taken inconsistently). As well as her TB, Aypara also has diabetes, often a lethal combination, and the two have a nasty habit of concurrently occurring here, presumably due to the disabling effect that high blood sugars have on the immune system.

Aypara’s two young grandchildren are delighted at the arrival of exotic strangers wearing strange things on their faces and speaking a funny language and excitedly jump on their grandmother’s bed and run around their parents, taking our photos on their father’s camera-phone. Aypara’s son finally loses patience with them and barks at them to leave the room. Unruffled, they continue their games in the next door room, ignorant of the ticking time bombs of latent drug-resistant tuberculosis lying dormant inside their little lungs that they must have inevitably acquired living in this household. In Uzbekistan, TB is commonly regarded to be a genetic disease, as it picks off members of the same family, one-by-one.

Aypara has had enough of her TB and is seeking definitive treatment. Patients know that presenting to the MSF programme dictates 20-months of regimented care and the publicity that accompanies being on DOTS [directly observed treatment, short-course], so some will try non-DOTS alternatives first, until they are finally desperate enough to present to us, often by which time the drug-resistance of their TB has ‘amplified’.

Of course we will give her treatment but, I explain,  it will not work if she chops and changes. She promises me yes, she’ll stick to DOTS.

And I hope she will. I really do.

However, no new drugs for TB have been successfully developed since 1968 and the current regimen is unimaginably difficult. After patients have taken the medications for a few months they start feeling better from their TB and this tends to coincide with the cumulative impact of the drug toxicity, side effects kicking-in and also their being worn down by the daily chore of taking fistfuls of drugs under supervision. And this is when patients tend to ‘default’.

Aypara’s initial laboratory results show that her TB is resistant to rifampicin and isonizid, so I know we need to start her on, at the very least, treatment for multi-drug resistant TB (MDR-TB). But the results of the resistance pattern to second-line drugs is not yet available, so I attempt to assess the risk of this by asking her about her previous treatments. If Aypara has taken any drug for more than one month, her TB is now liable to be resistant to it and we will have to ‘reinforce’ her regimen. Aypara rattles off all the first-line drugs in various combinations, but then says yes, another doctor gave her the second-line kanamycin injections for about 50 days. I’m disappointed, but not surprised. Uzbekistan has a poorly regulated drug industry and kanamycin is easy to purchase and readily dished out by people lacking in training in modern TB care. Aypara’s TB may well be resistant to kanamycin and this will further reduce the arsenal of drugs we have to treat her.

But what about fluoroquinolones, our best other pharmaceutical weapons against drug-resistant TB? Has she taken any of these previously? Murat, my translator says no, it is impossible, she cannot have, as these are not readily available here. But on my insistence he asks her. From beneath her mattress Aypara produces a shopping carrier bag full of drugs. I pour the small pharmacy of silver blister-packs of tablets onto the floor and leaf through them: anti-histamines, aspirin, diabetic tablets, blood pressure tablets, pain killers…fine, fine. And then a chill runs down my spine and, muffled by our masks, Murat and I let out a collective sigh: strips of tablets with ciprofloxacin (a fluoroquinolone) stamped on them. We are now potentially dealing with extensively drug-resistant TB (XDR-TB), and her chances of achieving cure are plummeting.

And for what? How has Aypara got her hands on these drugs, seemingly banded around like Smarties, when this is ultimately to the detriment of patients. Is it for lack of knowledge on the prescribers’ part? Is it that patients do not want to be on DOTS, because of the associated stigma, and therefore put a lot of pressure on the prescribers to give them an alternative. Maybe everyone is looking for a quick fix? All I know for sure is that we cannot truly tackle the problem of drug-resistant TB in former Soviet states until there is greater prescribing regulation and the pharmaceutical industry cares to bestow upon us some new more efficacious, less poisonous drugs.

It is agreed that Aypara will start on DOTS in the next few days. I go to shake her hands and say to her in English repeatedly ‘you will be okay, you will be okay’, I think because I want to reassure her and myself that she will. She grasps my hands in hers and kisses them and thanks me again and again. Then, still holding my fingers with her left hand, she places her right hand over her heart, and I mirror her gesture, a sign of respect. But really this is just a sign of the truly desperate nature of this TB epidemic.

*Names have been changed

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Lost causes

Murat, my Karakalpak translator, asks me if I have made plans for this morning.

I call him my translator, but that does not really do him justice. I believe he is fluent in at least six languages and has a degree in international relations. He knows our treatment protocols inside out. By sight he knows each of our patients by name and registration number. He knows who to ring and which strategies to adopt to get things done. He remembers everything I am supposed to remember to do. He makes everything and anything happen. He finds children lost to our programme and knows where to get hot food in the field and tells me off when I make a cultural faux pas. He is the Radar to my Major Burns, the Bernard to my Jim Hacker, the Gromit to my Wallace.

I have not yet made a plan for this morning. He nods his head, saying: “then, there are patients I would like you to see.”

Driving to see patients © Emily Wise

 

We have to strike a pretty miserable deal with our TB patients in Karakalpakstan. If they have multidrug-resistant TB (MDR-TB: TB resistant to our best first line-drugs) or extensively drug-resistant TB (XDR-TB: resistant to our best first-line AND second-line drugs), then their only (though by no means guaranteed) chance of a cure is to take up to eight unpalatable and side-effect-prone drugs for at least two years.

Often, after only a couple of weeks of treatment, patients will develop anticipatory gagging and vomiting, just on seeing the tablets. Or, rashes so itchy they excoriate their arms and legs to shreds. The pyrazinamide can make their joints so painful it is difficult to stand. Clofazamine causes their skin to become discoloured, like an overcooked fake tan, so that the one remaining neighbour who did not already know that the patient had TB, will now guess. Cycloserine can precipitate neurological and psychiatric symptoms such as numb feet, seizures, depression, psychosis and suicidal ideation. It would be an understatement to tell you we are in desperate need for better drugs, and soon.

Furthermore, TB patients have to be supervised whilst they take their tablets everyday by a nurse, usually at the ‘DOTS’ corner of their local clinic. If one day of drugs is missed it is added onto the end of treatment. If two days are missed there is a knock on the door from our councillors. If adherence continues to be a problem the patient may be asked to sign an adherence contract, after which if they continue to miss doses, their treatment will be stopped. Stopped until they are psychologically ready to start treatment again. Starting again at the very beginning, regardless of how many months of treatment they had previously completed.

But what else can we do? Unfortunately there can be no reasoning with Mycobacteria. Seventy-nine percent of our patients who have received TB drugs in the past present with drug-resistant TB. For years and years in Karakpakstan, TB patients were administered the wrong combination of TB drugs for too short a time or were sent home with them and they picked and chose which to take. Even now, despite MSF’s presence, TB drugs can be readily bought over-the-counter: I see Kanamycin (a last hope anti-TB drug in our current arsenal) being displayed in a local pharmacy in an attractive basket at the counter encouraging customers to buy on a whim without prescription.

And not only are poorly-adherent patients jeopardising their own health, but risk passing drug-resistant TB on to their family, friends, neighbours, that bloke they sit next to on the bus and that child they sneeze on in the bazaar. Forty-three percent of our TB patients here have drug-resistant TB even though they have never been treated for TB before. Patients either have to be on treatment and adhere to it or not take it at all – there can be no halfway house.

All we can do as health workers here is try to optimise a patient’s psychosocial situation before they are commenced on treatment, support them and manage their side-effects aggressively with extra medicines. It’s not impossible, it can be done. Overall cure rates for MDR-TB in good programmes are about 65 percent, and we have enrolled 4,000 patients here so far. But I would not wish drug-resistant TB on my worst enemy. Or their neighbour.

The bazaar in Nukus © Emily Wise

 

So, this morning, Murat has requested I see patients who have fallen off the TB-wagon. Our councillors have understandable reservations. Will I be giving them false hope? A brand-new English MSF doctor arriving with a miracle new cure? And when they see that I only have that good ‘ol 20-month regimen up my sleeve it will be another slap in the face.

But I cannot help but feel that even if I cannot persuade the patients to come back to treatment, it is not futile seeing them. I could perform assessments, examine if they are in need of palliative care. How can visiting a patient ever be a waste of time? How can a human be a lost cause?

I could simply tell them that they are not forgotten. Surely that is the humanitarian thing to do? And, of course, a councillor came with us. They are not in the habit of forgetting patients.

We arrive at the first ‘tam’ or house. It is typical for the area: one storey with a flat roof, an indoor courtyard and consecutive large dimly-lit rooms built of dark brown clay bricks, gas-heated and devoid of material clutter. We leave our shoes at the door and gather round a low wooden table (a dastarkhan) and kneel on beautiful rectangular mats of bright fabric.

We are visiting Salamat*, and he is my age. He managed about 10-months of treatment for his pre-XDR-TB before no longer being able to cope with his anticipatory vomiting and ‘defaulted’. His impossibly thin brother – his main carer – Ilyas*, sits by his side. The air and dark corners of the room feel laden with drug-resistant bacilli. For the fifteenth time in the three minutes since we have arrived I feel round my facemask to check the seal.

Salamat says he was happy that I am visiting him but, despite my pleas, no, he will not come back to treatment. It made him feel too awful, he would have no appetite, whilst now he feels fine. He states he sleeps well all night, he is gaining weight, his chest wall, which previously was openly leaking pus, has healed nicely. He has no cough and his breathing is fine. He only chooses to stay indoors because of the cold at the moment.

Have I got this drug-resistant TB all wrong? Maybe he has self-cured? Maybe 10-months of treatment is sufficient for cure? I turn to Murat puzzled. Murat prompts me: “Maybe we should ask his brother how he thinks things are.” And Ilyas looks me dead in the eyes as Murat translates what he says: Salamat continues to lose weight, he coughs all through the day and his breathing makes a strange whistling noise morning, noon and night. A national doctor comes regularly to change the purulent dressings of his chest wall fistula. Another family member is also in hospital with TB. Ilyas must wonder when his own latent pre-XDR-TB will awake. He is watching his brother die slowly. But what else can he do?

Maybe I shouldn’t document such stories in my blog. What is the function of blogging from the field? To advertise MSF’s successes, reassure donors that they are saving lives and persuade those at home so inclined to volunteer to become a humanitarian healthcare worker too? Maybe I should write the happy stories. After all, there are plenty. The patients who tough it out, are grateful for their opportunity of cure and knock back their free tablets and achieve that glorious stamp at the top of their case-file: ‘cured’. I see such cases everyday, queuing patiently at the DOTS corner.

But maybe not this blog, maybe I’ll write about them in the next blog. Today I’m writing about Salamat. So that he is not forgotten.

*Names have been changed to protect anonymity.

Posted in Doctor, Tuberculosis, Uzbekistan | Tagged , , , , | 11 Comments

I arrive in the field…

I am in the Uzbekistan capital, Tashkent, for less than 24 hours before I fly in an old Soviet twin propeller plane over cracked mud, wasteland steppe (akin to the moon’s surface) to Nukus, the main city of Karakalpakstan and my home for the next nine months. I am met by an air temperature of -21 degrees Centigrade and row upon row of grey, featureless, one-storey houses: a sprawling barren city with no discernable landmarks.

Compared to the some places I have been, it looks relatively developed and I say a little ‘thank you’ when I see the roads are in reasonable condition (something you truly learn to appreciate after travelling in Africa). Every front yard contains only parched, brown, dead-looking and unidentifiable foliage in dry, cracked mud. The streets are lined with dehydrated and leafless trees.

It is freezing cold but creepily, the sun is blazing above and there is no snow. I am told that it hardly ever rains or snows here, as there is very little water since the environmental disaster that was the Aral Sea drying up and receding, and what water there is has been poisoned with chemicals and pesticides. There are feral mange-infested dogs on every street. The people on the streets have gold teeth and weathered faces from years of a climate that fluctuates between bitter cold and sweltering heat. They wear huge overcoats and mink-fur hats and they look a cross between Iranian, Russian and Chinese.

I am taken directly from the airport to the MSF office, a hive of activity and friendly faces. A framed copy of the Nobel Peace Prize certificate that MSF was awarded in 1999 hangs proudly above reception. Everyone eagerly shakes my hand and in one go I am introduced to what feels like the majority of the Nukus 20 ex-patriot and 110 national staff. ‘This is Gul, Gulnaz, Gulshat, Gulbakhar, Gulsiyma, Gulyaim, Gulnara, and here we have Azizbek, Bekmukhammed, Berdibek, Adilbek and Khasanbek, then there is Alisher from HR and Alisher supply log…got that?’

Nukus office in action © Emily Wise

Nukus office in action © Emily Wise

 

I am timetabled to have over a week of briefings in the office, through which I fidget uncomfortably and as soon as I meet the doctor whom I’m to succeed, Johanna, I tell her lets stop messing around and start seeing patients. She smiles knowingly. Patience has never been a virtue of mine.

On the Friday evening after I arrive 25 of us from the office hit the Nukus night scene for dinner and dancing. I have always fancied my hometown of London as a remarkably cosmopolitan place and being in the employment of the UK National Health System means the pleasure of having co-workers from a whole range of backgrounds. But working for MSF…now this takes the biscuit!

I look around our happy circle dancing to traditional Karakalpakstan music. We are: a Swedish doctor, a Uzbek psycho-social councilor, a Columbian logistician, a German nurse, an Uzbek infection control nurse, an Ethiopian medical coordinator, a Ukrainian head of laboratory, a Somali medical team leader, a Californian training coordinator, a Syrian epidemiologist, an Iranian doctor, a Canadian logistician, a Pakistani logistician, an Uzbek receptionist, a Chinese-Canadian pharmacist, a Sri Lankan Project coordinator, a Dutch doctor and me, a British doctor. We are united by our determination to both tackle TB and to dance badly. It is bonkers but brilliant and London may well look downright boring after Nukus, the new centre of the social universe.

My New Family in Nukus © Emily Wise

My New Family in Nukus © Emily Wise

 

The following Monday, and I get what I asked for – I’m up to my neck in work in the field. Karakalpakstan is divided into 16 districts (‘rayons’) and each ex-pat doctor is given a rayon to manage, with the aim of sorting out the TB care in that rayon over two years, handing it over to the Ministry of Health (MoH) and then moving onto the next rayon. The ultimate goal is summed up in the name of our programme: ‘Comprehensive TB care for all’. Each of the rayons has a central TB clinic (where the patients are diagnosed, counseled and commenced on treatment) and then tens of satellite SVPs (rural medical points – where the TB drugs are administered and the patients are followed up).

The majority of my time in Karakalpakstan is to be spent bouncing between the TB clinic and SVPs, training the MoH national doctors how to appropriately treat TB, including drug-resistant TB, and supervise them doing so. I am only to intervene and manage the patient myself if I see that they are getting compromised care, in which case I am first and foremost a doctor with a duty to act. Through this method of training local staff and ‘capacity-building’ rather than just looking after patients ourselves as four ex-pat doctors, MSF can ensure thousands rather than hundreds of lives are saved. Since MSF arrived in Karakalpakstan nearly 4000 patients have been started on appropriate TB treatment. I am now responsible for the rayon of Xojeli, in which has had MSF present since April 2010. It is a real success story thanks to my two medical predecessors, Jan and Johanna, and all their supporting staff, and as a result it is my job to hand over Xojeli in March 2013 and then face the challenge of opening a new rayon.

Standard practice before MSF first arrived in Karakalpakstan was for TB to be diagnosed from X-ray changes alone and for patients to be commenced on too few TB drugs for too short a time, and for the patients to then take them sporadically. This resulted in a spiraling TB epidemic, patients requiring treatment for TB multiple times and rife levels of drug-resistance. By way of comparison, in the UK, where TB care is carefully controlled, during my 6-year career as I doctor I have only ever seen three cases of multi-drug resistant TB, all of which were imported. 68% of the TB in Karakalpakstan is now drug-resistant. The situation has been likened to a train about to derail.

Vrachee Bez Granitees © Emily Wise

Vrachee Bez Granitees © Emily Wise

 

Now, since MSF have arrived in the area, the sputum samples of anyone suspected of having TB are processed rapidly by a state-of-the-art MSF laboratory. The lab then reports if TB is present, and which drugs it is resistant to. The patients are counseled carefully to tell them the importance of adhering to treatment right to the very end as this is their best hope of cure, not spreading their TB and the TB not coming back again, more drug-resistant than before. Sadly, given the levels of drug-resistance, in most cases treatment involves up to eight different fairly horrific, side-effect riddled drugs, for at least 20 months. Patients must visit their local clinic everyday to receive their medicines, which the nurse watches them take (Direct Observed Therapy, or DOTS). It ain’t easy or pretty. In fact, it’s bloody awful. But at the moment it’s the best system available to treat a wretched disease that was until recently, literally out-of-control.

On a superficial level, the situation here may not look like an emergency. This is not a war zone or a famine or an earthquake. Nukus will not be making the BBC ten o’clock news. Furthermore, the predicament in which MSF finds itself in Uzbekistan is not typical for the organisation. MSF’s bread and butter is deploying where there is little or no existing health infrastructure, where it can operate fairly unilaterally and therefore is able to control the agenda, self-regulate and hold its staff accountable. Here, MSF finds itself the unlikely bed-companion of the national MoH. But be in no doubt – the drug resistant TB epidemic in Karakalpakstan is a humanitarian crisis and MSF is making a huge difference for the better.

I'm official now © Emily Wise

I'm official now © Emily Wise

Posted in Doctor, Tuberculosis, Uzbekistan | Tagged , , , | 10 Comments