I've been in Karakalpakstan for four months now. The guidebooks don't give it a good rap: ‘Post-Soviet cultural desolation' and ‘streets filled with desperation’, is what I read in an Uzbekistan guidebook before I left Australia.
I remember that moment, standing in the bookshop a few days after I had accepted my post, wondering what I had in store for me. But this place really grows on you. Yes, the streetscapes are bleak, the landscape even more so, the weather is extreme and you are in the middle of the desert. But the people here are so genuine and warm, they more than make up for it.
But there is a big problem with TB.
Most of my patients have multidrug-resistant tuberculosis (MDR-TB). Many have extensively drug resistant TB (XDR-TB). The treatment is long and difficult. But the patients here seem to tolerate it with a surprising level of stoicism.
Then I realise, they are used to it. For them, it’s normal. It’s normal to have your sister, your daughter, your colleagues, your friends, die of TB. Something that is unthinkable where I'm from.
It’s normal for them to have a form of TB that is so resistant to treatment, that even after two years of drugs, eight months of which involve daily injections, and their terrible side effects, the cure rates are still slim. “Do you have TB in your country?” they ask me - I almost don't know what to say.
Somehow, they still have faith. Bakhodir* is one of my patients, he is 19 years old. Last year he started studying in college. Last year he was also diagnosed with MDR-TB.
Many months after starting his treatment, a concoction of multiple different drugs, it became clear that it wasn't working for him. His treatment was failing and more drugs needed to be added. His MDR-TB had now transformed to what is referred to as pre-XDR-TB - it was becoming more resistant to treatment.
Even with the new drugs, he still wasn't improving. When I saw him last, he was gaunt, lying in bed, being nursed by his mother. His fevers and cough had returned. He was working very hard to breathe, using extra muscles to move air in and out, which is not a good sign.
But when I walked into his room, and shook his hand and wished him 'assalamualaikum,' - peace be upon you, he flashed me a big smile and thanked me for coming to visit him.
I turned to his mother, her husband - Bakhodir's father - had died from MDR-TB, and now her son was sick with the same illness. She thanked us also. Somehow she managed to remain cheerful even while she cared for her son.
Bakhodir told me that he knew, somehow, that he would get better, if he just took all of his tablets, every day, for the full two years. He still had such hope.
We ask a lot from our patients here, we ask them to take tablets every day, directly supervised by a nurse. We know that supervision in this way improves adherence to treatment and helps patients complete their TB treatment properly.
They must travel every day to their medical centre, where they are given their medications. Each day it’s the same thing. They are not allowed to take the medications home with them and take them without supervision.
Most don't have transport and it involves walking to their health facility. Some might have a donkey or a horse, if they are lucky.
During the rains the roads are impassable. In winter it drops below -20 or -30. In summer it’s over 40 degrees in the shade. But we still demand they come. And that they battle the side effects, and not stop their treatment. And that they take their daily injections for eight months, which are painful, and toxic to their kidneys, can make them have permanent vertigo and deafness. And the tablets, which turn their skin a strange shade of orange, and can give them hallucinations, and bad nausea and vomiting. It probably means that they have to stop work, cannot care for their children and their family.
And still we insist. It’s a lot to ask, and if it were asked of me, even for the sake of my own health, I don't know if I could manage.
*name has been changed