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HIV-positive activist from Russia: “It is important that the doctor says it’s not the end, you still have a chance”

September 15, 2018

We continue the series of special feature interviews by Natasha Sidorenko “Life stories about living with HIV and overcoming tuberculosis”.

I’ve been acquainted with Natalia for very long, it seemed like all my life. But in fact, it’s only 3 years. This is a very active, tenacious young woman, who also develops her own business. She has been living with HIV for 18 years and helps other HIV-positive people to protect their rights, and is a moderator of a large online community for PLWH. Natasha is a member of the TBpeople network. We’ll now listen her story and impressions about the network.

The network gives me a sense of unity, understanding that I’m not alone. I provide counseling to a lot of people with tuberculosis and I can always turn to TBpeople and clarify some things that I do not know. I want more face-to-face meetings and training on tuberculosis, specifically for activists.

Иллюстрация: Eric Pautz

Illustration: Eric Pautz

When you learned that you have HIV, how did you feel about that?

Actually I was getting ready to hear my diagnosis. I have since 2000 suspected that I have HIV infection, but I avoided testing and hoped that it will not happen to me, but the problem did not get past me. Of course it was painful and scary. All I wanted was to find a person who already lives with HIV and ask if they were afraid of dying. I really wanted a second child. I thought that if I had HIV, I would never be able to have a baby again. Then I did not understand that women with HIV may give birth to healthy children. My doctor said, “Now you should forget about having a child. And the most important thing is not to infect relatives, so you’d better have your own hairbrush”. For some reason, that thing about the hairbrush was carved in my memory. Of course, it sounds ridiculous now.

That’s terrible, which year was it? 2005?


How has your life changed since you learned about your diagnosis?

It’s hard to say, but I think it changed for the better. At first I was afraid, because I did not know anyone who lived with HIV. And when I met such people and understood they are not going to die soon. I was very impressed by this, because I thought that the maximum lifespan with HIV is 5 years. Later, I attended a self-help group and met other people with HIV. They already have been living with this diagnosis for about 15 years and at the same time looked healthy. And I imagined that people with HIV should be bone thin and pallid green. After the group I realized that people do actually live with HIV, began to look for information, accidentally got to the large conference, then I visited some trainings and got involved in activism. I changed a lot in my life, wanting to maintain my health.

How did you know that you have tuberculosis?

It happened at the same time. I learned about having HIV and tuberculosis in 2005. If they did not enroll me in a hospital with tuberculosis, then I certainly would not have been tested for HIV. Before I got to the hospital with tuberculosis, I started to lose weight abruptly, I had symptoms of a cold. And I treated myself like in case of ordinary cold, I used to take anti-fever medicines and cold remedies. I was very happy that I was losing weight. I was hardly curious about the reasons then; I began to like my image in the mirror. It got to the point that I was choking and could not get out of bed. My mother called an ambulance. The ambulance arrived, the doctor auscultated me and said, “I cannot hear you breathe at all, you need to go to the hospital urgently, you have pneumonia at the best”. But I did not immediately go to the hospital, I gave a written refusal, because I did not want to be sick. And yet I was hospitalized in the pulmonology department. I shed 35 kilos, but did not understand how serious it was. I was diagnosed with tuberculosis, enrolled to a TB dispensary and tested for HIV.

What happened next?

I was not particularly knowledgeable about different medical examinations, and in general I was not up to it, my fever did not cease. In a couple of hours my blanket and pillow would become wet with sweat. I already started coughing up blood, I was suffocating. I had a very severe form, fibrous-cavernous tuberculosis. One of my lungs decayed and its breathing function failed. The doctors asked, seeing my X-ray shot, “How do you breathe? We do not understand”. At that time, I already realized that everything was too bad. But in my condition I just did not have strength to panic, I just wanted to live so eagerly – my eyes were closed, I was panting, I was already on oxygen. I was scared to die and really wanted to live.

Did you tell your family and friends about your condition and diagnoses? How did they react to this?

The daughter was very young then, and I told her about HIV when she became older. However, I immediately called my mother and husband and said that I have AIDS and tuberculosis and I’m dying. My mother strongly supported me, although she was afraid of HIV infection even more that of tuberculosis. Now we are discussing everything openly, she knows the ways of disease transmission and is not afraid. I did not tell everyone about my condition, but I cannot recall anyone who would turn from me.
And when you were told about tuberculosis, did you know something yourself or did the doctors tell you?

Nobody told me anything, the only thing I knew was that TB can be only suppressed. I thought TB is never cured completely. There was such a myth then.

Иллюстрация: Eric Pautz

Illustration: Eric Pautz

Tell me about the process of your treatment.

Treatment was very difficult for me, I was treated since 2005 and only in 2013 I was removed from the TB patients record. When I just started to be treated, I was very thin, was in a grave condition, I could not eat anything, I was constantly sick and vomiting because of medications. Fortunately, one kind-hearted nurse in the hospital fed me from a spoon and gave me pills crushed to powder. I was 22 then and I really wanted to live. I was ready to take any medicine and eat anything to survive. I did not show any improvement in the X-ray pictures after 2 months and the phthisiatrician told me that this is already a wonderful result, because my condition did not deteriorate. And I realized that I have a chance to survive, however faint it was. I had first improvements after 4 months. These were minor changes on the X-ray. Doctors were happy, and so did I. I had stayed in that hospital for 11 months. At first I had a smear-positive form of tuberculosis, I do not remember when sputum tests became negative. I recovered a bit and was already more vigorous and cheerful. I was very tired of staying in the hospital and physically I felt much better. At last I began to walk on my own, albeit still feeling short of breath. And 11 months later I left the hospital. Doctors said that I need to continue treatment, otherwise I will die and that this is only a temporary improvement. And I was treated for another three years, sometimes I used to be hospitalized in a clinic. We had separate wards for HIV-positive people, we understood that this was discrimination, but it was okay for us. There were some advantages too – we could have meals in the ward, while everyone else had to go to the common dining room. By 2008, all my “holes” in the lungs had healed, and the left lung, which was not breathing, shrank to the scar tissue. That is, it was no longer a decaying mash. It was a solid scar that needed to be removed. I could not get a surgery in my city, because they did not have “special” protective garments to perform surgery on HIV-positive people. And I was given a quota for a surgery in Moscow. I am very grateful to the staff of the Moscow hospital, because the doctors’ attitude was not affected with HIV. I had a surgery to remove the left lung, and it was removed completely. Rehabilitation after the surgery was excellent. In 2013, I was officially removed from TB records.

What were the difficulties and barriers you had during the treatment of tuberculosis?

At first I did not tolerate drugs well. The attitude of the doctors was like, “You have HIV, what do you want? Be happy that you’re still alive”. And it’s important for me to hear from a doctor that it’s not the end, that I still have a chance. But the doctors would hardly tell me anything except “You have HIV, you seem to want too much”.

When did you start taking antiretroviral therapy?

I started ART in 2 years after the beginning of treatment of tuberculosis. Many people in my ward have been given therapy, but I was not prescribed it. And it seemed to me that since I was not given those pills, it meant that I had a slight chance of survival. I myself asked to give me those pills. And they prescribed me therapy.

What are the most common myths about tuberculosis you have come across?

The most terrible thing is that TB may only be suppressed. This word “suppress” just makes me mad. People believe that tuberculosis is not cured completely. And they lack adherence because of it, they start taking medications, but stop it after any improvement. But they do not know whether the TB is cured. It is necessary to adhere to treatment and complete the course rather than give up once you feel a bit better.

Do you agree that early diagnostics of tuberculosis will save the lives of most HIV-positive people?

Absolutely. I am 100% sure.

How often is it necessary to undergo a TB screening?

HIV-positive people should do it once every six months.

What do you think, what helped you get well?

A had a wild desire to live. And the fact that I took all the medicines, I was not picky about medications and adhered to the prescribed treatment until the doctors said it is completed.

Illustration: Eric Pautz

Illustration: Eric Pautz

And what influences adherence to treatment in general? What do you think that can change the situation, so that people would not leave hospitals?

Support of your loved ones is very important. Also it is crucial that doctors provide sufficient information. Doctors should stop treating patients with HIV infection and drug addiction as sentenced to death. If a person uses drugs, then at best one is discharged from the hospital for violation of the hospital regime. Substitution therapy is needed. Doctors should learn to perceive drug addiction as a disease rather than a whim. The phthisiatricians do not teach us much about the treatment of tuberculosis in HIV and have little information about drug addiction.

People who have problems with tuberculosis treatment seek help from you as a legal counselor. What examples of the violation of their rights you can provide?

I receive quite a lot of requests for assistance. Often people are refused hospitalization or registration as a person with disability. Some get discharged for violation of hospital regime. Others experience discrimination by doctors. So far, the patients’ medical records are labeled with special marks and everyone can see that they have HIV. After treatment of tuberculosis, doctors do not want to provide referrals to special recreational facilities for recovering patients. Others deny TB treatment to people without local registration, but where a smear-positive patient has to go?

How do you help them?

I provide legal advice of patient rights, I tell what procedures are envisaged by the law and how it should be carried out properly. I help to draft complaints and appeals to the chief doctors, to the health authorities. I share my experience and knowledge.

Where can patients go if they need help?

The project “Peers protecting peers” and the group “PLWH tips”.

What are you dreaming about?

I am pregnant with my second baby. I adore traveling and wish I could travel more often. And, certainly, I dream that TB and HIV epidemic in my country is curbed.

The interview was taken by Natalia Sidorenko representing TBpeople network in the regional Partnership program. The network mission is “Unite people, overcome TB”.

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