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Uzbekistan:"All I need is a metre of rope"

11 Dec 2015

Amrita Ronnachit is an infectious diseases doctor from Sydney, Australia, on her first mission with Médecins Sans Frontières in Nukus, Karakalpakstan, Uzbekistan.

Some days are just tough. Or maybe I should say, some weeks. I’ve been having one of those. Just a crappy week. Recently, a few of my patients have been having poor outcomes with their TB treatment. Sometimes they talk about doctors assuming a sense of personal failure when things don’t go well for their patients. I’ve heard it discussed in cancer medicine, everyone is full of hope when the chemotherapy is started, but when it becomes apparent that the cancer is coming back, doctors find it hard to explain to the patients that the treatment hasn’t worked. Some say that doctors have trouble giving patients the news that their chemotherapy has failed, because to them it means that they themselves have failed.

Treating TB has some parallels with treating cancer. The treatment can be long and arduous, with toxic medications, which have terrible side effects. Pretty much the same as chemotherapy. And sometimes, it fails and the TB comes back. When it happens, it's hard not to wonder if there was more that we could have done.Today I visited a patient whose treatment has failed, and his results show that the TB is coming back. He is a young 19 year old boy who has studied to become a mechanic. He was almost at the end of his treatment, just one month to go, when he started to have some symptoms again. At first he told himself that it was just the flu – he often gets them. But last week I saw his test results – it’s not the flu. And further testing has showed that his TB, which was the multi-drug resistant form, is becoming more resistant, what we colloquially refer to as ‘pre-XDR’. XDR, or extensively drug-resistant TB, is one of the most resistant forms of TB, and is very, very hard to treat successfully.

“I try and imagine what he is going through, a young adolescent, forced to endure sickness and treatment, whilst watching his friends enjoy their youth, yearning to be like them. Yearning to be healthy and carefree.”

When I walk into the ‘DOTS corner,’ (Directly Observed Treatment, Short-Course) where the daily medications are administered to TB patients in their local medical centre, Ulugbek* is already there with his mask on, awaiting us. Patients wear surgical masks to prevent the spread of TB, and we are also wearing respirators, to protect ourselves. For me, it makes talking to patients a bit awkward, since we can only see each other’s faces from the eyes up.  I ask him how he has been and what has been happening to him. We talk a while about the side effects that he has been experiencing – nausea, vomiting, dizziness, weakness, hearing loss and tinnitus. I ask him how he has been managing so far with these problems, and he tells me that he has been managing to tolerate it until now.

I start to explain about his results. Last week the Médecins Sans Frontières team visited him to tell him that his TB had become detectable on his sputum sample again, but we weren’t sure what this would mean for him. But now we know that his treatment is definitely failing him, and needs to be changed.  I tell him that the regimen we have been giving him is not working, and we will need to switch to another combination of drugs. It also means we will have to start his treatment all over again, a full 20-24 month course. The months of treatment that he has had so far won’t count, and he will have to restart his daily injections again.

"Twenty months of treatment? Fifteen to 16 tablets a day, right? No, I would rather die. All I need is a metre of rope" Through the surgical mask I can hear his strangled breathing. He is trying not to cry but eventually he can’t hold back the tears. His anguish is all too visible as he slumps over the table, and slams his fist onto its surface. "Why has this happened to me? Why can’t I enjoy my life like my friends? This is like torture, why do I have this life? It is better to die."

He is distraught. I can see his hands are trembling and he is tapping his foot irregularly on the ground. It seems as though he is brimming over with distress. I try and make eye contact with him, but he looks away, tears streaming. I try and imagine what he is going through, a young adolescent, forced to endure sickness and treatment, whilst watching his friends enjoy their youth, yearning to be like them. Yearning to be healthy and carefree.

Eventually he rips his mask off, overcome, and wipes his eyes. I can see his full face now. I wish I could take off my mask too, and I wish I could speak his language, to remove the barriers between us. We try and soothe him, explaining to him that there are treatment options that we can offer him. We counsel him as best we can.  For the first time in 40 years there is a new TB drug that has come onto the market, and we think that this could be a good shot for him. He is young, and strong, and he can overcome this. The two years on treatment will pass.

"Twenty months of treatment? Fifteen to 16 tablets a day, right? No, I would rather die. All I need is a metre of rope"

"You don’t know how the days are for me. For you they pass quickly, but not for me,’’ he says, and he is right. "It seems as though my nightmares are coming true,’’ he says, and he is right. He is right, because for TB patients, every day is a burden. Burdened by intractable nausea, dizziness, weakness, a constant buzzing and ringing in your ears, joint pains and hearing loss. I really have no idea how they tolerate it, day in and day out, for two years. It is exhausting. For many, it really is a nightmare. He is right. We sit with him as he cries. For a full hour, we try to convince him that there is hope. I am worried about his earlier statements about ending his life – we have had some TB patients who went that far. I make a mental note to urgently discuss his case with our counsellors.

As we walk outside, I see Ulugbeks’s bicycle parked out front. It is old and rusted, but he has livened it up with with tassles and colourful bike spoke decorations. Something about that bike makes my heart break a little more. In the car on the way back to the office, we are all silent. I think back to my crappy week. All of those problems, my ‘first world problems,’ as I call them, seem so irrelevant, so self indulgent.  Everywhere, there are stories of tragedy that would make your heart break. And everywhere there are people, who have much less than you, but manage to find happiness nonetheless.

TB is a neglected disease; we need new treatments and we need them now. Tuberculosis doesn’t have the attention of the international community, but it should. The burden of tuberculosis rests on the underprivileged, and the health care workers dedicated to helping them. The burden should not rest on our shoulders alone. This disease is everybody’s problem, not just the neglected few. Please don’t forget them.

* Name has been changed to protect privacy.

 

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