Positive outcome

Pregnant women with HIV talk about how doctors and others relate to them, and how to give birth to a healthy child

In 20 Russian regions, more than 1% of pregnant women are HIV-infected. This means that the epidemic has reached the highest stage. The worst statistics in the Samara and Sverdlovsk regions - there are pregnant women with HIV more than 2%. TD recorded the stories of three pregnant women with HIV from the Samara region.

Vera, 35 years old

Lives with HIV for two years. Pregnancy: 38 weeks. Married, husband-HIV-negative

The fact that I have HIV, I found out during the planned test of tests. I had a short connection with a man who, after six months of relations, went to another city in English. I think he did not know that he had a virus. He does not know now - I do not have his contacts.

I remember I left the clinic with this sentence and I think: "Well, everything, a pipe." I went to my mother, she climbed on the Internet, and we both calmed down a little - we read that you could live with it.

Pregnant woman with HIV photo: Elena Anosova for TD

I already had a man then - I told him everything in spirit. He passed the tests and was clean. He also stated that since it would not be protected. So I became pregnant naturally.

I was not immediately prescribed therapy. I had 289 CD4 cells, I was told that treatment was not required. I did not know then that according to the law, therapy was prescribed if the number of these cells is less than 350, so I agreed. And only then, already during pregnancy, talking on the forum with a consultant, I realized that they just decided to save on medicines on me.

I just decided to save on medicines on me

Since pregnant people are prescribed therapy without fail, I was prescribed by Caletra and Stavudin at 14 weeks. The consultant told me that Stavudin cannot be taken, especially during pregnancy: since 2000 it has been banned in Europe, it is considered high toxic. He has many side effects, for example, lipodistrophy. That is, a hump can grow, or there will be an imbalance. I was horrified by this information and ran to the doctor to ask for a replacement. The doctor resisted until I said that I would write a letter to the Ministry of Health. Then I was replaced by Stavudin with Videx. The pancreas hurts from him, but still it is better.

The pills divided my life into temporary segments. I take Videx at eight in the morning on an empty stomach, after an hour you can eat. Then Kaletra - two large red pills along with Lamivudin, small white. If they are taken on an empty stomach, there will be vomiting and diarrhea. And in the evening, again, Kaletra and Lamivudin - only seven pieces. At nine, I have breakfast and at nine dinner - I live by the clock.

Pregnant woman with HIV photo: Elena Anosova for TD

Therapy is issued for exactly a month. To get another portion of drugs, I have to go to the AIDS center twice: first I need to take tests, then come for the results and get pills. There is no point in my city, you have to go to Samara. This is a few hours of the road there, then back. On April 19, I will go for analyzes, and 25 I have a Caesarean plan. I won’t be surprised if you have a mug along the road.

Together with HIV, I have a lot of fears. Fear for the family. I'm afraid that my husband will become infected that the son will be born with a virus. I'm afraid for my health. I’m afraid that colleagues find out - I work in a civil service, I see how about some citizens who come to our reception, they squeamishly say: “Aption” and wash their arms, pens and tables after leaving.

The AIDS center does not talk to us, are treated like furniture. You come to the doctor, they say to you: there is so much virus, so much load. Here is a recipe, goodbye. There are forever lines, you are waiting for two to three hours, they have no time to communicate with the patient. And how many those who do not tell anyone, and for whom the doctor is the only one you can talk to! They have a psychologist there. I went once. The young girl says:

“We will all die once, well, now.” Since it happened - live.

- And how to live with it? - I ask.

- Yes, as you live and live.

I no longer wanted to go to her.

Pregnant woman with HIV photo: Elena Anosova for TD

Recently I was informed that after pregnancy, therapy will be canceled. Against the background of the tablets, my number of CD4 cells grew up - the last time it was 680. They say that oh, how good everything you have, therapy is not needed. But I have such indicators against the background of therapy! Will be canceled - and it will be bad again. I cursed, cried and asked - nothing helps. But I have an HIV-negative partner! We have long been protected, and I am very afraid that a condom will break or something else will happen. And they say to me in direct text: “Dear drugs, we prescribe them to those to whom they are vital. And you can do without them. ” In general, I do not know where to contact in order to conquer the right to therapy. I recently sent an application addressed to the head doctor, if necessary, I will finish the Russian Ministry of Health.

While this material was preparing, Vera gave birth to a boy. She is still waiting for an answer from the chief doctor of the AIDS center.

Olesya, 36 years old

Lives with HIV for 15 years. Pregnancy: 27 weeks. Not married.

I used drugs for 12 years. In the 1990s, almost every house was traded in cheap drugs in our house. I was interested, I tried it. Well, hooked. I degraded - deceived, stole. And also these britches, illnesses ... really wanted to quit, but could not.

In 2003, I became pregnant and learned about my status. Then it was impossible to give birth with HIV - at 16 weeks I was called artificial birth. I clicked that if I do not start looking for a way out now, then everything, I will die. And I wanted to live. I registered on the HIV-infected website, went to a meeting of anonymous drug addicts. There they advised me to lie down for treatment in one center. Since 2006, I am sober - neither drugs nor alcohol.

Olesya has two children, and, of course, she gets tired of the photo: Elena Anosova for TD

I have not taken therapy for 10 years, only during pregnancy. I will give birth and throw it. So gave birth to two healthy children. I did not determine the viral load, everything was fine, like ordinary people. And the doctors said that I do not need drugs. And then the platelets suddenly fell sharply. I think the body failed due to the lack of therapy. I was immediately appointed to me, but the problems did not end.

I then realized: it is better not to mention doctors once again that you have HIV - they will not treat

I began to find lymph nodes in the area of ​​the neck. I worried, went to the doctors. As soon as they learned about my status, they waved: “What did you want, you have HIV!” “What kind of cancer do you have, what did you come up with? You have HIV! " It is very scary when you live, you understand that something is wrong with you, you knock on all the doors, and they kick you from everywhere and take it for a fool. I then realized: it is better to once again not mention doctors that you have HIV - they will not treat.

I slept half -sitting, choked and, in the end, I found on the Internet the symptoms on the Internet that I had a lymphoma. I went to the hematologist in Moscow, who is engaged in HIV-lymphomas. After the Moscow Doctor, they immediately took all the tests here, cut the nodes. And found.

Now Olesya has two sons, and she is waiting for the third. All children were already conceived in an HIV-positive status photo: Elena Anosova for TD

Reception of chemotherapy, along with the use of HIV therapy, you can’t wish anyone. The drugs enhanced the effect of each other, and it was ten times worse than all scraps. Diarrhea, vomiting, unbearable pain. I could not get up, eat, sleep - only writhed in pain. I asked the doctors to adjust me the dose of certain drugs, as they do in Europe in my cases, and he ordered to endure.

After “chemistry” I did not restore the bone marrow, despite my good indicators in the HIV virus devoured it. Moscow prescribed me bone marrow stimulation with drugs, but we were told that there are no such drugs. They worked on the papaverine and sent home. I think I survived only because I really wanted to live.

My scheme is seven tablets per day on schedule, for each appointment I have a reminder in the alarm clock. At first, the scheme was not bad - I took the English drug to Kvez. Then, during pregnancy, I was replaced by two Russian drugs. They are new, there were no clinical trials what it was is not known. I drink, because there is nowhere to go, and what side effects will be, I will find out later. I really hope that such a scheme will not affect the child.

Olesya had a scan of biopsy and deformed veins after the treatment of Hodgkin's lymphoma photo: Elena Anosova for TD

I decided on the third child immediately after I overcome the cancer. I remember the doctor told me: "Six months, and you can get pregnant." And so these words sunk to me. I really, very wanted to survive, recover and give birth! My husband abandoned me during illness - he could not do it. Now I wear a child of a beloved man, but I don’t want to marry anymore - we have a guest marriage. He knows about my diagnosis, it refers normally. I do not tell the children, but I don’t tell anyone at all. I'm very afraid that someone will know, because children are schoolchildren. God forbid the parents will begin to resent that the mother is so, and this will affect them.

We have wild people. Once I handed over to the rights, and our group was supposed to come to the bus to pass the exam. It was necessary to go to Togliatti, and someone shouted: "Yes, they have 30% venerable!" And everyone shouted: "In general, we will not get out of the bus!" I sat and smiled to myself: "You should not go into it then, since I'm going."

"Strange, I have no disgust for you"

It is amazing how few people know about HIV. What far to go, even my gynecologist, a good woman, often pronounces such a phrase: "It is strange, I even have no disgust for you." I think all this blindness is from the lack of prevention. They don’t say on TV, posters, no advertising. Well, I see booklets at the infectious coat. But I already know my diagnosis, why do I need prevention?

The AIDS-center can not even organize a item with us where you can get medicines-you need to go to Samara. So people remain without therapy. I recently wrote a power of attorney at a notary public to my mother to receive medicines. It costs one and a half thousand. And if there is no money, or there is no one to write a power of attorney to anyone?

Olesya is very worried that at the school where her children study, they learn about her diagnosis of photos: Elena Anosova for TD

Now the pregnancy proceeds normally. Perhaps because I control everything. They are afraid to contact me - I am defending my rights before blue, so they try not to harm. And with illiterate it happens differently. Here, a friend says: "They appointed tablets, warned that helicopters might be from them." I tell her: "Yes, you refuse!" And she does not even know that the drug can be harmful. And how many are there? It seems that the illiteracy of the AIDS center is on hand-everything goes quietly and calmly. Everyone takes what they give, and do not perform.

Valentina, 30 years old

Lives with HIV for nine years. Pregnancy: 24 weeks. Married, husband is HIV-negative.

At 20, I fell from a great height and crashed hard. I could not get out for a long time and I remember how the attending physician said, looking at me: "Why isn't she healing?" I found out the answer on the day of discharge when he said: "You have HIV." I was out.

I could not understand where. I had a civil husband, a normal, healthy person, we were going to get married. She asked him to take tests, he said after three days that he had handed over and what was clean. And then he washed down and left me: injuries plus the virus - he did not master this. I think he then lied to me about tests.

Husband and Vali family support her photo: Elena Anosova for TD

I did not know where to go and how to live. She didn’t say anything to anyone, even mom. And half a year roared at home, recovering after injuries. I was then sure that I would die soon. Six months later, I gathered and went to the AIDS center-to take tests. The status was confirmed. I learned that there is a group of mutual assistance for people with HIV. There I found out that they really live with the virus, and quite normal. She began to look for information on the Internet, then she decided to therapy.

The worst thing was to tell loved ones. At first she opened her mother, then to her girlfriends. Everyone took it normally, except for the husband of one friend, he forbade her to communicate with me. Today, almost all friends know about my diagnosis.

Once in the company in which I did not work long, I went to sick leave. As long as I was not, my colleagues rummaged in my table and found a diary, where there was a mention of HIV. We were worried, soaped all the surfaces with chlorine and ran to the director: "Firing the" hassle ", or we ourselves will leave." I then dumbfounded: the 21st century, adults, and such wild illiteracy! The director did not fire me, but provided me to choose if I want to work with these people. I understood that they would shy away from me and hate. And left.

For Vali weekly sorting drugs - everyday lesson photo: Elena Anosova for TD

People are divided into those who do not know anything about HIV at all, and those who think that HIV is drugs. And I am sure that poor statistics in the region due to the lack of prevention. It is necessary to tell all segments of the population what HIV is, how to get infected. The AIDS-Center does not carry out this prevention and does not give others. For example, in addition to the main work, I work from E.V.A ( non -state organization that helps women with HIV. - TD). We would love to conduct lectures for free in schools and universities. But they are not allowed there. Iron logic: if you are talking about HIV, then you are talking about sex. And if you are talking about sex, then you promote it. The same with drugs.

The situation with therapy in the Samara region is also deplorable. Here they argue like this: it is better to buy more drugs, but worse and cheaper. I have been taking life therapy since 2009. At first, normal drugs went, but already in 2012 they changed the scheme, prescribing a harmful Stavudin without explaining the reason. The doctor could not honestly tell me that there were no drugs. I remember how I was pounding in the hospital corridor: we are talking about my life, but I can’t do anything! Then I refused the therapy: I decided, it is better to die with my death than from the side of the drug. A year later, I was assigned a more or less normal scheme. Also from cheap tablets, from generics, we have no others, but still.

Valentina photo: Elena Anosova for TD

You can’t throw therapy. If he started, and then he threw it, the fallen virus wakes up very angry and eats immunity cells faster, and irrevocable infections may begin. Taking therapy is a very strict, step -by -step plan. Everything should be clear in time. It’s even better not to late for five minutes. And this is very difficult with the number of tablets that are given to people in Samara, and in other regions. In Europe, therapy of HIV-infected person consists of one tablet per day. In Russia, people take from three to nine tablets. For example, I drink nine tablets daily: four in the morning, four in the evening and one for lunch.

If the right drug is not, the circuit is changed. And this is very harmful to health, because addiction to a new scheme is accompanied by side effects - nausea, general malaise, dizziness and others.

Among the HIV-positive, it is customary to build relationships with the "even"-this is easier. But I do not understand how to build relationships based on the diagnosis. And love? You can’t pull her ears ... with her future husband, HIV-negative, I met at a friend's wedding. We parted in different cities and talked to Skype. He did not know about my status, and, falling in love and more, I thought with horror about how to tell him. In the next evening, during communication at Skype, I wrote to Andrei: "I have HIV." And burst into tears. And he only asked: "And what?" Then he asked the main questions: I am dying, can I have children. And all. I came to me, we talked and decided to get married.

The terrible scar on the side of Vali remained after an accident in the mountains when she fell from a height and lost part of the lung. After that operation, she found out that she has HIV photo: Elena Anosova for TD

There was no romance when the child was concerned. I took a condom with his sperm, went into the bathroom and introduced it into myself with a syringe to exclude risks. And everything worked out the first time. If a woman correctly takes therapy and leads a healthy lifestyle, the risk of transferring the virus to the child is 0.02-0.04%, because then the viral load is zero. I remember that we were told at lectures: if a pregnant aunt in the village, not knowing about his diagnosis, will give birth in the field and cut the umbilical cord with a sickle, the chance that the child will have a positive diagnosis - 10%from force. I do not know a single mother who has a healthy lifestyle who gave birth to a “positive” child.

In case Russia suddenly remains without drugs, I have a small stock. Enough to convey the pregnancy, and there I will act on the situation.

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