TB&Me: "People have a real fear of the disease"

TB has been part of my life since childhood.

My grandmother, great-grandmother and uncle all died of it. My mother had TB for a long period of time. She fell sick in 1989, three years after my birth.

She died six years ago, here in Zhytomyr hospital. She was 52-years-old.

Receiving my first diagnosis

When I fell sick with TB for the first time in 2005, my life fell apart.

I had been dating a man for three years and we were planning our wedding. When he discovered my diagnosis, he left me at the hospital.

People have a real fear of the disease – it’s easier for them to accept that a person has cancer.

The treatment didn’t go well at first but it was clear to me that I had to recover. I had seen my mother fighting various stages of TB.

I remember her horrifying cough, her troubled breathing and how she coughed up blood. I understood I needed to be cured so that I wouldn’t die in such a horrible way.

After four months in hospital and three months at a long-term residential facility, doctors told me I was healthy. The word "healthy" comforted me.

I started to live again. I found a job. I met my husband.

Undergoing treatment, again

In 2007, one month after we started our relationship, I relapsed. My husband stood by me but the treatment went worse than the first time.

I had a temperature of 39.6 degrees Celsius for three months and the drugs didn’t work. I lost 35 percent of my hearing.

I was discharged after more than a year and then doctors prescribed me treatment for 20 months, but I fell pregnant one month after leaving hospital.

Fortunately, the baby was healthy and so was I.

I lived relatively normally for 10 years. I gave birth to a second child and kept going for regular check-ups.

My DR-TB diagnosis

Then the disease returned. I was admitted to the Zhytomyr Regional Tuberculosis Dispensary in February 2017. This time I had drug-resistant TB.

My husband took time off work. Luckily, we had savings, so he could stay at home with the children and I could stay at the hospital.

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Oksana Parafeniuk

Zhytomyr Regional TB Dispensary, where MSF provides treatment for drug-resistant tuberculosis

My treatment was complicated. I struggled with the side effects of my medication. I vomited, I couldn’t eat and I had a high temperature. I lost seven kilograms.

My daughter didn’t want to speak with me for the first month. She thought I had left her. It got better when I was no longer infectious and could see the children again.

After some time, my daughter understood that I needed to be cured in order to live. But not everyone is so accepting.

There is still a lot of stigma around TB. People often think that you’ve lived a bad life, that you have poor morals. I would rather have told people that I was taking cancer medication. People have a real fear of the disease – it’s easier for them to accept that a person has cancer.

I explained to people that although I was ill, it was not my fault.

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Accessing newer drugs

At the end of August 2017, I was discharged from hospital to continue a programme of ambulatory care.

After a month I had to go back to the hospital for treatment correction when we discovered that my body was intolerant to one of the drugs.

That was when I started the programme run by MSF. They did tests and offered me bedaquiline.

It was much better because I didn’t have to use the drugs that had caused my hearing loss. My hearing never returned to its original state but it didn’t get worse.

Now I don’t need to take any medication. It’s been a month since I stopped, but I still can’t do everything like a healthy person would. I have a hole in my left lung. The lung collapsed and shrank like a dried fruit.

Life after DR-TB

When it’s hot in the summer and dust is everywhere, breathing becomes difficult. In winter, breathing is tough because the air is cold and humid.

When I’m stressed, I have trouble breathing. I can’t walk while speaking on the phone. I can only run a maximum of 300 metres. After couple of hours out with my friends, I feel like I’ve worked a shift in a mine shaft.