This morning I joined one of the doctors at the MDR-TB hospital, which is set on the outskirts of Nukus on the edge of the desert. We arrived at the hospital, met the other doctors, and set off to do the rounds. Standing outside the hospital, I fitted a mask to filter the air I would breathe to prevent me from inhaling any mycobacteria. Looking into the hospital from outside, I could see patients walking up the stairs, cleaners mopping the floor and staff passing- all wearing masks. We entered the hospital, and walked past the drugs table in the reception area where patients go once a day to take their medicines. Each person receives one little, round plastic filled with colourful pills.
We rushed along, and entered the first room. Three men, each sitting on the edge of their bed, awaiting to be questioned by the doctor. How are you feeling? Why did you not take your medicine everyday? I hear you ran away on Saturday, why did you leave and not take your medicine? I stood at the back of the group of doctors in their white coats and yellow masks, listening to my whispering translator and deeply aware of every breath of air that I breathed in. It’s impossible to think about breathing in a normal way when you enter an MDR hospital. Every one of the patients in the hospital has multi-drug resistant tuberculosis. That means that the TB they have is resistant to the strongest TB drugs that are available. MDR patients have to take up to 20 pills a day for at least two years. MDR TB is not something that you want to breathe in. But while I stood protected by my mask, I imagined what it must be like for the patient sitting on his bed looking up at the four white coated doctors whose masks inflate and deflate with every breath. He would never see the doctor’s mouth, see if it smiles or laughs. He must spend the next 2 years talking to masks, and explaining why he couldn’t swallow the drugs yesterday because they made him vomit, or they made him deaf, or he wanted to see his wife so he ran away for a day…..
We went to each room, and asked all the patients how they were. Some were feeling better, smiled and were happy they would be going home soon –home, but not yet fully cured: most of them will need another 1.5 years of ambulatory treatment. Others complained of deafness, gastrointestinal problems, headaches, all side effects of the drugs. There was an XDR (extensively drug resistant TB) patient who had been an inpatient for two years and seemed close to giving up on the treatment. Apparently, none of the available drugs are able to cure him. A young girl who had TB two years ago, was now back with MDR TB, and her mother had died of TB. The pictures you see on TV or in books of people who are just skin and bones became reality for me today. While many patients were thin, there were a few that were so thin- it’s hard to imagine that they are alive and breathing. You want to cry, but you can’t cry- this is their reality and you have to hope the drugs will work and they will get better.
We finished the rounds, and stepped outside into the sunshine, and stripped off our masks and inhaled the fresh air. It was just another day for the doctors on duty, and we walked to their office for a meeting. Being in a meeting where you have to be translated is so difficult! Someone speaks, but instead of being able to understand what is being said, you strain to listen to the whisper of your translator desperately trying to summarise and translate the gist of the conversation. You miss, or misunderstand about 50% of what’s going on…
My afternoon was a little more normal for me as I was in front of my computer drowning in numbers, looking at the patients’ weight over the course of their treatment. The numbers were more powerful this afternoon though as those light patients now had a face.