The second house

As a one -room apartment in Moscow can save life

We help the second wind collected 6,482,460 R required 6,480,000 r

The collection of funds is over

Two and a half years Lena Arefieva was not at home. I did not see my favorite dogs, I did not visit my friends on the next street. Lena fought for her life and waited for her happy lottery ticket. It was possible to win a jackpot only having lived all this time in a foreign city and in a strange house. For 15 months she was waiting for light transplantation. She waited for a suitable donor to appear, and she could again breathe in full chest. And finally he will be able to travel. Let not in Paris, even if at least in Pereslavl-Zalessky or to Kostroma. She was nowhere.

At the age of 27, her lungs almost refused to work, and the choking girl on the reanimobile was taken to the Moscow hospital. Lena has a complex hereditary genetic disease - cystic fibrosis. This is an incurable disease in which secrets (mucus) are too viscous and thick to perform different vital functions of the body. From this, the lungs gradually cease to cope with their main task - to breathe. And the lungs of Lena lasted a long time. Most patients in Russia simply do not live up to such an age.

Lena photo: Anna Ivantsova for TD

Lena Arefieva was born in January 1987 in the hospital of the city of Alexandrov in the Vladimir region. On the second day, the doctors noticed the baby's problems with digestion. Neonatal tests for cystic fibrosis in Russia began to be done only since 2007, and thirty years ago it was not possible to hear about such a disease to the district center doctors. They suspected that the cause of digestive disorders was Chernobyl. His consequences that year were seen in all pathologies of newborns, even if mother never approached the zone infected with radiation. They could not make the diagnosis, they selected the medicine that removed the symptoms and was prescribed home.

And then the four -year -old Lena successfully ate in the garden of an unnecessary gooseberry, and she was taken to the hospital with suspicion of appendicitis. Successful, because otherwise Lena would have been treated for a long time to do not understand what. In the metropolitan RDKB, a diagnosis of cystic fibrosis, intestinal form was diagnosed. Doctors did not give intelligible forecasts. Maybe until the age of seven will live up to 15. “Return home. Once every six months, come for examination ” - that's all the recommendations.

"Medicines are laid, but they are not"

Every six months, Lena and her mother went to the RDKB. It is now that doctors all over the world know that patients with cystic fibrosis must be isolated from each other: weakened immunity that is not working mucous membrane, dangerous infections easily wander between children playing in the general hospital hall. And then they collected all the children from the department and taught to cough - in the general hall for therapeutic physical education. Lena lasted until the age of 14, and then picked up the Pseudomonom and all the pulmonary problems accompanying cystic fibrous problems.

Until 18, life looked like this: six months-a school, girlfriends, sports mugs and dreams of the future, then-three weeks in the hospital on droppers, and again into battle. At the age of 18, a doctor in the RDKB gathered grown children with parents and said - now be observed in your clinics at the place of residence. There is nothing else for adults in Russia.

Lena with her mother Lyudmila photo: Anna Ivantsova for TD

For many years in Russia, cystic fibrosis was a childhood disease. Most of the patients simply did not live to an adult age. Now in Europe the average life expectancy of such patients is 50 years, and the adult itself is seventy. In Russia, patients with cystic fibrosis still live 20-29 years. For a long -term quality life, constant, expensive supportive therapy is needed. Getting medicines in many regions is still a quest. For two years, Lyudmila offended the thresholds, knocking out the necessary expensive drugs for Lena. "Law?" ““ Put ” -“ Give ” -“ You need 600 thousand drugs, and 500 thousand were allocated to me for all the children of the city, ”the mayor said tiredly, but put the desired signature. For two years, Lyudmila treated Lena herself - according to the scheme. And then it became possible to observe in Moscow hospital No. 57, where since 2002 there is the first specialized department of adult cystic fibrosis in Russia.

Incredible chance

It is impossible to cure cystic fibrosis, but since 2011, Russia began to make a bilateral transplant of the lungs, and this is a chance for a new life. Lena first missed the information about the transplant. "Well, some kind of fiction." She studied at a pedagogical for a child psychologist, worked part -time in the store and waved off the words of the doctor that the state of the lungs was deteriorating. Lena fell down overnight, on the eve of the last state exam. I came in the evening from my girlfriend and began to choke. The already written diploma remained in the table. I had to part with dreams of a diploma, car and travel. It was necessary to buy an oxygen concentrator for the wrong one hundred thousand, and Lyudmila called Maya Sonina. Maya took care of children with cystic fibrosis in the RDKB - how the volunteer came to engage in painting with them, helped to get the necessary drugs. And in 2009, she organized “oxygen” - a charity fund for patients with cystic fibrosis. At first, the fund tried only to alleviate the suffering of patients, helping with oxygen respiratory devices and drugs. But when in Russia, transplantation surgery began to undergo patients with cystic fibrosis, oxygen actively joined in support of the guys who stood in line for transplantation.

Why do you need an apartment

To get your chance, you need to live in Moscow for a long time. In a separate apartment. There are simply no funds to rent even the smallest odnushka for the Moscow Ring Road with families and seriously ill children with disabilities. When Lena only had to queue for transplantation, he and his mother decided that they could live at home, in stronen. And the fund may better help those who live very far from the capital. But the doctors rejected the idea immediately. “100 kilometers from the Moscow Ring Road - of course, not far. And how many will you get from your string through traffic jams? " - the doctor grunted sarcastically. The entire expectation of transplantation (and mandatory annual rehabilitation after) the patient should always be in time accessibility from the clinic. Lungs are a very delicate organ. Transplantologists have only four hours from the lung fence with the donor to the transplant. As soon as the suitable organ appears, the score does not go to the clock, but for minutes - to immediately get to the clinic and pass preoperative examinations and procedures. All this time it is necessary to live not only in Moscow, but in the part of the city where GKB No. 57 is located - doctors should be able to visit patients as often as necessary .

Lena photo: Anna Ivantsova for TD

The bell can be heard at any time. But how much transplantation will have to wait - it is impossible to predict in advance. Several months, year, two. Lena was waiting for new lungs for 15 months. At first, he and his mother shuddered from each phone call. The alarm suitcase stood in the corridor ready. The first time they called from the square in four months - come. An hour later, Lena and her mother were in the clinic. But, when in the ward they were already talking with an anesthesiologist, the surgeons were rejecting. The lungs of the donor were struck by tuberculosis. Surprisingly, after Falstart, it became easier to wait psychologically. Life entered the rut: from midnight to six in the morning, a dropper with a special diet over a gastroint, in the morning - six hours in a mask on an oxygen concentrator, inhalation, and by the evening the forces appeared to go to the park for an hour in good days.

On the left: After the operation, the ribs were mercilessly. Lena complained to the doctor. “Still, they saw them,” said the surgeon. On the right: for more than a year, Lena received a special high -calorie diet through a gastrostostom. Lena laughs that now she has two navels photo: Anna Ivantsova for TD

When a sister came to visit Lena, my mother left for a couple of days in Strunino to visit the household, buy products and other necessary things. Products were carried from the Vladimir region. In Moscow, they mainly bought only bread and milk. Capital prices did not get along well with two pensions - Lenin in disability and mother’s. A quiet December evening with a mother with her daughter who visited her dad left in Strunino, leaving Lena and her sister. The girls chatted. The sister braided long Lenin hair in a pigtail pigtail when a bell rang out, and Lena saw a highlight of Scraps on the screen. And the spikelet two weeks after the operation and resuscitation barely blurred.

New life

Lena returned home only a year after transplantation. The same house, the same room, her computer, father garage, garden outside the window. But life has changed. A new horizon, plans and dreams appeared. A little bead, barking loudly, does not move away from the beloved mistress. She didn’t even see her to see her and now she does not leave one. As soon as Lena, having thrown back the platinum long hair, sits in a chair, the bead immediately climbs her knees to her and snappers on everyone who wants to get closer to the mistress. Lena does not want to sit at home, but it was not easy to find work with the first disability group. In the meantime, she applied for a mountain altai campaign for people who suffered light transplantation. Lena really hopes to go through the selection and in the summer to see Lake Taurus with his own eyes.

Lena photo: Anna Ivantsova for TD

Constantly in a lung expectation sheet - a dozen tens of patients with cystic fibrosis. And everyone needs a house to wait for a chance to breathe deeply. In this house you need to hold out to the treasured call from the clinic. The Oxygen charity fund helps patients who are waiting for transplantation. If you subscribe to the monthly payment in favor of “oxygen”, then young children will have new light and grandiose plans that are not implemented while your world is in the length of the oxygen concentrator.

To pay for one apartment on the outskirts of Moscow, the oxygen fund expects to spend about 30 thousand rubles a month. Multicaponal apartments are not suitable due to the specifics of the disease: patients with cystic fibrosis should in no case be in the same room due to the danger of cross-infection, which may become fatal for them. Now oxygen has 15 such wards as Lena. And each of them hopes for a miracle. Let's help them wait for him.

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