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18.10.2013 | 13:45

Before, after, then

Story of Asya Chuhlich, 23 years. This girl has contracted tuberculosis but managed to overcome this disease - and lived to tell about her experience: "Tuberculosis was for me on a par with diseases such as HIV, syphilis, hepatitis ... it was something that, by definition, couldn’t touch me, because it is a disease of "lower classes"".

Story of Asya Chuhlich, 23 years, MoscowThis girl has contracted tuberculosis but managed to overcome this disease - and lived to tell about her experience.
 
Part I
 
What did I know about TB? Perhaps only that it is something very distant and terrible. Television showed gangster series, where in prisons only the worst ones are hurt by this disease. Tuberculosis was for me on a par with diseases such as HIV, syphilis, hepatitis ... it was something that, by definition, couldn’t touch me, because it is a disease of "lower classes".
 
A year ago I was in the hospital with pneumonia. Doctors repeatedly asked if I had a contact with a carrier of tuberculosis, if I had visited anti-social places. I was scared, shaking my head and thinking, how could they ask such terrible questions. Tuberculosis had not been identified, then. A year later, history repeated itself. Only this time the suspicion of tuberculosis was serious, and soon CT scan confirmed the diagnosis. My life was divided into "before and after".

Competent doctors told immediately that the disease could be cured in a year, under favourable circumstances, but advised not to forget that everything is very individual. As they said, I’d spend 2 months in the hospital at most.

Time before the clinic just dragged on. During this time I managed to revise my plans for life several times. Hope dies last. I had hoped to the last that I would only drink complex drugs, continuing to lead a normal life. But then doctors said that with my diagnosis I couldn’t even be applied to the day patient facility. So I got into ATD number 4 in Moscow.
 
The place is very decent, everything is clean. Wards are tailored for two and three persons. Sterility and regime are maintained. We were fed three times a day, the food was nourishing, and even resembled food in a camp or school cafeteria. And, of course, medications, injections, and procedures. To each his own, as they say. And there were no homeless and drug addicts, as I thought before. In the dining room, I noticed a lot of men who were over 40. There were fewer women - mostly aged 25-35 years. Someone came here to be treated, and someone gets there not for the first time, just because once they refused to be treated - for a variety of reasons. Someone is set up for recovery, someone is constantly afraid; there are even those who do not care. But, nevertheless, we are all here. And every week, unfortunately, the wards take in newcomers.

The doctors here are great. They treat, test, examine and are keeping an eye out for the patients so that they comply with treatment. Everything is as it should be. Unfortunately, they just do not take into account one thing, which is very important for everyone: we have all been afraid, are afraid and will be afraid.

Talking with other patients, you find out that they were also crying like you when they found out about their diagnosis. Then they cry when they see strange words in the medical forms for tests /clinical examinations /imaging, etc. We are afraid because we do not know. Doctors believe that we should not bother with the extra terms. They think that it is more likely to harm than benefit us. But people are naturally afraid of the unknown. We ask why we’ve been undergoing the same tests for the second week, though patients who have the same diagnosis haven’t been doing it; why some people who’ve been here for 5 months are being sent to bronchoscopy together with those who have been here for a couple of weeks, and others aren’t being sent. And a lot of other questions, silly, serious, viable and not so viable. The patient needs to know everything, because it concerns his health, which has been temporarily taken by the disease.

Doctors tell everyone the same thing, that all is well, you’ll live. And they do not like it when someone’s body rejects medicine. Of course, for them this is not the first time, but one hundred and first, and not even the last one. But the questions why I’m having an IV for the second week are being answered not by the doctor but by the nurse.

Doctors must talk to their patients, to discuss. Having such a complex disease as tuberculosis it’s important not only to receive the medicine, but also to know how your illness occurs, why today you are given more pills or less. It is important to verbalize everything that happens to you. Phtysiatrist, as a specialist, needs to know what his patient encounters, and, therefore, he should understand how important this information is for a patient. Psychology, psychology and psychology again. Here, the doctors strongly advise not to talk, not to advise or to discuss. Again, why? Because they think that we do harm and scare each other even more. But, according to my own experience, when you recount to your neighbour for the tenth time what the doctor had said, when you express your thoughts on the subject, it becomes much easier. After all, the doctors themselves told us how important the internal emotional state was.

A month in a TB clinic had passed. During this time I learned that tuberculosis is not a disease of homeless people and drug addicts. No one is immune from it. One has only to relax - to not eat on time, to get nervous, to have a bad sleep, - as the problems start. There are open and closed forms of tuberculosis; it has its own classification. But all that you find out not from your doctors but from a medical form where your diagnosis is written. Frightened, you look on this topic in the internet and retell everything to your neighbours, starting with the words "As I read ...”.

During the month of my stay here I was on the clinical examination in the seventh clinical TB hospital. After it, I consider our clinic a wonderful institution with good conditions. No more crying. All the time I say to myself: "I was lucky”. The red brick buildings of the hospital number 7 are reminiscent of old factories, made of red bricks; some wards stand empty with broken windows. There are dark and narrow corridors in the site where I’d been placed, the patients are in pyjamas, issued by the hospital. If you compare our clinic and TB hospital number seven, there is a difference in sensation. We have spacious and light wards, the rooms are often ventilated. You understand that you came here to be treated - and that you will be cured. There you go in, and it appears as if your condition will only get worse. It’s scary, again. But some people are being treated in such conditions, and, perhaps, are even cured. They say everyone who came to Moscow and is not registered are treated there. And they say that all those who did not get into a normal hospital are treated there. We are lucky.

Patients should not forget even for a moment that they are being treated; thus, they already have a chance to recover. The rest depends on the competence of doctors and your inner core, which saves you in the first place.

I'd like those who have learned that their friends have tuberculosis wouldn’t be put off as it was a century ago. Even if there was contact, good immunity would protect you from this disease. Do not forget about the open and closed forms. Timely examinations and maintenance of immunity are the guarantees of health. Unfortunately, we understand that only when we are already in the clinic. Therefore, healthy people should better listen to the sad experience. After all, even the simplest attention to yourself can save you from such a serious illness.
 
Tomogram, made almost a month later, showed that there had already been a partial resolution. It was too early to talk about recovery, but every such news gives new strength to fight the disease. To fight, no matter how hard it is.
 
Part II
 
It’s been 2 years since I left TB hospital. After leaving hospital, I spent 2 months in the specialized sanatorium. It benefited me greatly. In spite of the scary prognosis of the doctors that I’ll have to spend at least 6 months in the hospital, I’ve recovered much faster. In the sanatorium I was told that hole in my lung had closed.

Of course, I didn’t say the final goodbye to this place. In the spring and in the summer I go there, as a responsible patient, to undergo medical tests and to make a scan of my lung. Also, I go there if I have some ache in the ribcage, in my lung or cough oddly. But every time the result of the scan makes me feel much calmer.

I’ve made peace with a lot of things during this time: that I can’t sunbathe, visit saunas, get nervous... The last issue is the hardest one but I try. I’m even joking about my pale skin that this is fashionable nowadays. The only thing that hasn’t left me during this time is fear. It seems that someone who survived this disease is apt to think about it at least once a month. I’m lucky – I have a support of my parents, friends and my phtysiatrist.
Besides, I’ve reconsidered my vision of life. The proverb “What we have, we don’t keep” is 100 percent accurate.
 
Remembering myself 2 years ago, I’m starting to feel proud about myself and my courage. And about the courage of all the people who were treated, who fought, who believed – and who recovered. Tuberculosis is a life-long stigma. It’s a memory, a signal for other people that you can’t ever, ever forget about your health.

2 years ago I thought that I won’t have normal life anymore. I’m glad that I was wrong. Today I work at the large marketing holding, carry out interesting projects. I like yoga, to play badminton, to meet friends. And I share a lot. I share my story, I’m calling people to regularly check their health and to comply with the regime “Sleep, rest, eat”.

I’ll always be grateful to the doctors that managed to cure me, that supported me morally. I’ll never forget the support and help of friends and parents during this terrifying and difficult period. I’m grateful to all of them. And today I keep repeating to everyone who faced this problem – don’t be afraid, fight and believe in your recovery. Your stories of illness and recovery will be put into one big book about tuberculosis, and they will have happy endings. Fight no matter how hard it is. And everything will be fine. I managed. What about you?".
 
This story also appeared in Russian.
 
Фото: Kate Dudnik.
Ключевые слова: люди, сила воли, поддержка, уважение
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