In 25 years, Irina Chernovskaya have a favorite young man, diploma of marketing and the dream of a big family. And to breathe normally, Ira daily consumes about 60 pills, spends six hours per inhalation, two times a year goes to the hospital. After 18 years of life changing drugs out the entire disability pension is 14 thousand rubles, but the state pays only one trip to the hospital per year.
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Cystic fibrosis is a rare genetic disease that affects the glands of external secretion. The liquid, which secrete various organs becomes too thick and viscous. The mucus clogs the lungs, it blocks the digestive system. A person can not breathe and eat without a lifetime of therapy.
Although children with this diagnosis develop intellectually and physically on a par with their peers, they had killed to adulthood. But modern medicine can prolong their life for many years – they learn, work, create families. Such patients should be protected – including from infections, which are particularly susceptible to their lungs. That’s why people with cystic fibrosis often dangerous for each other – they have different microbial flora.
Think less about the disease, so it was not difficult to live
In Russia with cystic fibrosis the lives of over 3,000 people. In the Kuzbass – 58, and only six of them were adults. One of them is 25-year-old Irina Chernov.
We met on the terrace of an outdoor cafe. Irina is very beautiful – the delicate, dark-eyed. In conversation, she never says the word “cystic fibrosis”. Admits that he tries not to think about the disease, not reading about it online, as many. According to her, it only hinders treatment and a happy, full life.
– In the childhood I wanted to become a doctor. Thought I would go to medical and find a way to recover, and then I will save others. But over time, this idea was abandoned. The less you know about the disease the better. I’m not stuck on it. It’s not supposed to bother me. So you do what the doctors say, and not figuring this out for myself. There are people – read a lot of articles on the Internet, and then give up. About us, patients with cystic fibrosis, always write – “every year is worse.” I have until everything is stable. I believe that all will be well, – says Irina.
Put the catheter and you’re running around, playing, like all children
Irina Chernov grew up in a small town, the Furnace in the Kemerovo region. He is a half-hour drive from Kemerovo. His father worked as a driver freight locomotives on the local station, mother is a cleaner at the train depot. After the child’s birth she had to leave the job – the girl was choking cough, and the doctors are at a loss.
– The diagnosis I was given three years. Before that there were endless examinations, my mother and I practically lived in hospitals. After the disease has decided it does not. I was lying, even at the tuberculosis clinic. Then mom accidentally read in the newspaper about the RCCH the Russian children’s clinical hospital. I was seven years old. We went to Moscow, – Irina remembers.
The doctors confirmed that the child has cystic fibrosis, and prescribed antibiotics. The girl immediately became easier. After that, Irina and her mother came to the clinic every six months. The fare for a child with a disability and his accompanying was free.
From childhood I most remember is the hospital, not home. There lived? Yes, good fun. Earlier we were lying in separate boxes. The doctors did not know that we are dangerous for each other. In the house there were three or four people, it was not boring. Put a catheter and you get out and play… Like all children – says the girl.
The effect of treatment was missing for about two months, and then again developed shortness of breath. Therefore, until the fifth grade, the girl was home-schooled. The teacher taught her the Russian language and mathematics. It wasn’t enough.
After fifth grade I decided to go to a regular school. I dreamed that I would be friends. And other items I wanted to explore. The parents consented. They all supported me.
– How were you received in class?
– As his own! I’m the kind of person every find a common language. It’s easy for me to communicate. To a stranger can approach the conversation to start. So I quickly came friends. And the teachers all treated me well, understood.
After the ninth grade, Irene left the school. Knew that two more years it will be hard for you – because of illness, she often missed lessons. So I chose a technical school, specialty of a cashier-checker. The time I did not want to lose, and the profession will be useful. Three years later she received the red diploma.
I wanted to study further at University. Chose the faculty of Economics, Department of marketing. Act on the budget failed, but helped Fund “the Island” – I paid for three years of study out of four. I could not believe my luck when I found out that the Fund will help! It was a good time: it was fun, – says Irina. – Now I understand: the work will not pull due to inhalation – it takes almost six hours. Most of the day I do your health, otherwise you will not survive. If I someone took on part-time – would go, – the girl complains.
Friend died at the age of 15
Irina remembers the moment when she first became really scary – died, her friend with the same diagnosis, the 15-year-old schoolgirl. She lived in the Furnaces, the girls went together for treatment in Moscow, sometimes communicated.
– It is not saved in the Kemerovo regional hospital. “Planted” on the ventilator. This is the worst thing that can happen to us. The patient with cystic fibrosis, these tubes can not be set. So she died… I was very hard, I cried. The disease had won. The funeral did not go – for me it was too painful and scary. My mom said goodbye to the girl and supported her family as best they could, – Irina remembers.
A few years later Irina has experienced a severe exacerbation. And the first thing she said to my mother was, “don’t let the doctors get me on a ventilator”.
– It happened in the third year. I had a high temperature, oxygen dropped to 80%. Usually I have it kept at 93-95%. I couldn’t breathe, I constantly beat the cough. Even basic housework is hard. But I’ve been coming to the last. When he came to the doctor, she was surprised: “How you have made it this far? What is the tuition?! Immediately to the hospital!” And immediately put me in the hospital.
I thought then that won’t make it. It’s very hard. Well, next was my mom and my favorite person – Joe. They helped me a spirit not to fall. And good people supported. One woman from Novosibirsk gave me a bottle of oxygen. I breathed it, it helped too. Now I still have this oxygen, in the period of exacerbation it helps me.
He loves me and believes that I can handle it
Irina Chernov met with Ivan in a social network. She was 16, he was two years older and lived in Prokopievsk, in the South of the Kemerovo region. After a short correspondence they met Ira was in his mining town as the guest of the sisters. And never parted: went to each other on the weekends. Four hours on the bus, is it far, surprised Irina.
We have been together for eight years. People often ask me: “And you did have friends?” Lucky for me, I love met. Vanja is very kind. I of anything not refuse. Helps in all – ensures that medication is taken, do not forget about the hospitalization. He understands that I am a fan, but not obsessed with it like many people. Not feeling sorry for me, and sympathizes with and supports. Know that I will succeed, says Irina.
She always says if she is sick, not feeling sorry for myself. The girl has seen people who have lost hope.
– In our city there lives a boy, who also has cystic fibrosis. He sees no meaning in life. Once I have a diagnosis, so I can’t do anything… Repeats that he has no future. I tried to talk to him. Convinced that life is given once. Now this medicine, what a disease you can fight and win. I heal and go to Moscow, believe me… But nothing happened.
One mother was convinced her son with cystic fibrosis to school to let go, he wants to study with everyone, and that because of illness forbids it. Said she forbids the child to live a normal life, so it is impossible. Don’t know if she heard me…
“Our adult patient”
Parents of children with cystic fibrosis call Irina “our adult patients.” She tells them about what awaits their children in the future. After 18 years of a person’s life with a rare disease is changing. And not for the better.
– In the childhood I was treated in Moscow twice a year. Now I can only afford one trip to the hospital No. 57 in 12 months. The state pays my driveway, the treatment is free, but food something at your expense. A lot of money. As for drugs, you until adulthood to get them was not easy. Now even more so… the Drugs are very expensive, but many people have to buy themselves: local authorities do not issue them in time.
On medicines Irina spends almost the entire disability pension is about 14 000. Preparations for cough, inhaled antibiotics, drugs for liver support, vitamins, calcium… She managed to achieve the second group, and indefinite. The girl admits that it was difficult. Previously, she was the third that had to be confirmed every year. It eliminated free travel, and the benefit was less.
Drug to the liver I have five years did not get the recipe. In the hospital give an analogue, it does not suit me. Because of the antibiotics I have a serious problem with the liver, so this drug, I buy myself. In a month spend about 3000 rubles… In the period of exacerbation often buy expensive antibiotics. For example, 10 tablets one of them cost 1000 rubles. And I need to drink one twice a day for a month. So consider. When I was 18, I was signed on for another counterparts. Wanted money to save. Now think: it is better to indulge in new clothes, but I will take all that is necessary.
Rather, almost everything. Some drugs Irina can’t afford. For example, inhaled antibiotic “Colistin” – the cost of the course amounts to several hundred thousand rubles. A less expensive drug that also required her, bought one of the charities. Soon stocks will end, and local health Department provided the patient Chernovskaya only for two months. Ordering Irina was done in October 2017, a response received in June 2018. What to do when the drugs run out?
– People are most likely to help children and animals. But adults sometimes fails to support charities. I am very grateful to everyone who helps me out all these years. This is “Oxygen” and Maya Sonina, the “Island” and Pomogaet. Don’t know how I would have done without the caring people.
And when we were talking about the fact that the import drugs may limit, Ira got scared. She tried to take the necessary medicines to make them last more time. Fortunately, as a result, the ban on the import of medicines, the law was not included.
Start to think about the children – and it hurts
Irina Chernov and her partner dream of a wedding. While her money is not enough – most of the family budget is spent on medicines.
I began to think about the children. And it hurts. The doctors do not permit me to give birth. If I lived closer to a Moscow hospital, it would be possible. The whole pregnancy I should be under the supervision of experts. So I dream that we’ll move to the suburbs…
And I want to believe that everything will work out as planned Ira. She defies cystic fibrosis, when skiing, despite brittle bones, believe in their dreams, grapple with the fears. This love for life she generously shares with others and teaches: you are not your diagnosis, the disease can be defeated.
Photo of Maksim Kiselyov and from public Internet sources