Sardor, Kyrgyzstan, 50 y.o.: “The most important in fight against TB, is to not quit treatment”

I was born in the southern capital of Kyrgyzstan, in the city of Osh. My father worked for 40 years at a silk factory and my mother was a shop assistant. We have a big family – nine children, I am the youngest.

I studied at an Uzbek school, but I did not manage to finish it, because in the 10th grade I was sent to jail for fighting. I was sentenced for six years, and served five and a half. A year after I was released, I got married and we had a son.

I could not get a job, so in 2008 I flew to St. Petersburg to work with my brother. We were working on the construction site of the Leningrad nuclear power plant, located 70 kilometers from the city. The difficulties began in 2013, when only people with Russian citizenship were allowed to work at the plant. I did not have Russian citizenship, so I found myself working for a taxi service. Previously, it was a firm that helped us with registration, but now there was no one to do it, and I did not renew the registration myself. So when I was detained by the FMS (Russian Federal Migration Service), the court ordered my deportation. As in Moscow, foreigners in St. Petersburg are deported through Temporary Detention Centres for Foreign Nationals.

We had to buy the return tickets home at our own expense, I had no money and my relatives could not help, so I spent more than half a year there. Ordinary migrants were sitting in the open cells, they could walk around and use mobile phones, but when they saw my tattoos, they put me in a closed cell with the former criminals. It was very damp there, the food was horrible, not even pigs were given that kind of thin broth. In six months, no one from the consulate came to check on us. Even when I was in prison in Osh, they checked on us more often! Then I met some guys from Uzbekistan, they were also waiting for deportation and worked as food handlers. Once a day they would bring me food, which they cooked for themselves.

In May 2013, I suddenly ran a fever of 40 degrees and was sent to the S.P. Botkin Clinical Infectious Disease Hospital. They took a chest X-ray, took a lumbar puncture from my spine, and it turned out that I had lymph node tuberculosis. As I understood, it was all due to dampness and poor nutrition. I spent 10 days at the hospital; they couldn’t treat me for free any longer. But the doctors already did a lot for me, they helped me very well.

When I came back, they put me in a separate cell and gave me normal food, even juices. But I was still very thin – instead of the usual 60 kilos I weighed 44. Three days later I was sent to Osh. It turned out that the doctor at that hospital had told my superiors that if they didn’t want me to die there, they should send me back home as soon as possible. The policeman escorted me to the airport, where he said: “You can fly or run away, but don’t tell anyone that you have TB, or they won’t even put you on the plane.

The day after I arrived, I went to the hospital and it all started: they wouldn’t accept my referral, asked for money, said that I needed a new examination. I had no money, so I left the hospital. It was already hot in Osh in May, I had a fever, I felt so bad, and all the time I was afraid of infecting other people.

On my way home, I met an acquaintance, and that meeting literally changed my life. He told me about the Plus Centre Foundation, which works with TB patients. With the help of their staff members, I was admitted to the hospital free of charge. I spent three months there, and I had already developed pus-filled lumps on my neck. I had to have an operation, and again they demanded money from me. I was very indignant at the time, as the entire hospital was covered with advertisements saying that TB was treated for free in Kyrgyzstan. I had to call the Foundation again and only then was I operated on for free and sent home a week later for outpatient treatment.

I thought that was the end of it. But then the lumps appeared again. When I went to the polyclinic, I was told that they did not treat lymph nodes at the Osh hospital and that I had to go to the neighbouring town of Jalalabad. There, they demanded money from me again, so I again applied to the Foundation for help. The treatment was hard, and I lost a lot of weight – my body would not tolerate pills or food. Somehow, I was saved. I had been taking pills for 18 months and finally recovered only in 2015.

From then on, I started a new life. I got a job with the Foundation and also as a social worker at the AIDS Centre. Now I have become the kind of person who fights with doctors and helps people get the free treatment they are entitled to. From day one, they extort money from people: for a bed, for bed linen, and so on. And I say to doctors, it is more profitable for you to cure a person faster, than to let them infect others, who will then come to you.

The most important thing in the fight against TB, is to not quit treatment. People have to take medicines for at least a year. When they start to feel relieved and stop taking pills, that is the worst thing. Otherwise you have to start from scratch again, and if you only have to take 5-6 pills a day now, later you will have to take 10-20 pills a day and for much longer. I explain all this to people. 

During my work I got to know all the doctors in the city. They advised me to have another child, it is customary for us to have a big family. I was afraid to infect my wife, or that my child would be born ill. Anyway, I had a son in 2001 and a daughter in the autumn of 2020. They are 20 years apart. I’m a happy man – I’m doing well with my family and my job.

Recorded by Ekaterina Ivashchenko
Illustrations by Alexander Nosov