"They gave a chance to still live"

An ordinary story that a person with a terrible diagnosis can only be hoped for supporting loved ones and the help of funds, but not for the state

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To defeat myelofibrosis, Tatyana Chernykh had to sell the apartment. But there was still not enough money. I had to get into loans and contact the fund

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Tatyana is almost sixty, and she lived all her life in the Altai town of Aleisk. For more than fifteen years, she served in strategic missile forces, and then in her own part transferred to a civil position.

“There are 36 thousand people in our town, I don’t want to leave anywhere, my husband wanted to somehow transfer us to Rostov, but I don’t like the climate there. We have winter so winter, summer is so summer, there is such beauty. They thought that we live on the outskirts, but it turned out that Christ has a bosom, ”says Tatyana.

In 2010, Tatyana began to feel somehow strange. There was no pain, but there was a feeling that everything was not so. The husband said that we had to go to the hospital. She passed the tests - reduced hemoglobin. Ultrasound showed an enlarged spleen. She was diagnosed with osteomyelofibrosis. This is a rare disease of the bone marrow, when hematopoietic cells are replaced by bone or connective tissue cells, and in the blood it is gradually becoming smaller and smaller than working blood cells - red blood cells, platelets, white blood cells. For four years, Tatyana took medications that restrained the process of cell degeneration, but these drugs did not help to cure the disease finally. The doctor offered to do bone marrow transplantation.

Tatyana Chernyy photos: Natalia Bulkina/Schischi for TD

“Of course, I was very scary. But the doctor said that this disease is not treated otherwise, but will only progress. And with successful transplantation, you can completely get rid of it. I was confused, and then I thought that there was still no other way out. My husband supported me. He in severe cases always says to me: “It would be because of what, we will survive.” But it was still scary. "

The first time Tatyana arrived in St. Petersburg for a consultation at the Research Institute of Dogit named after R.M. Gorbacheva in May 2014. Brother as a donor did not fit, so I had to look for a foreign bone marrow donor. He was searched for nine months, and in March 2015 Tatyana was called to transplantation. Together with the delivery of the transplant, it cost 20,500 euros. The Advita Foundation paid for the delivery of donor cells, paid for drugs for transplanting and housing next to the clinic for the entire treatment. They made a transplant itself by quota, but Tatyana and her husband had to look for almost a million rubles to search for a donor: he himself had to look for:

You know, adults do not have to hope for fees.

“I tried to get some money in social protection, they said that it was necessary to collect a bunch of papers, and then, perhaps, they would give me three thousand rubles. I did not do this. The Advita Foundation also put my questionnaire to raise money, but you know, adults do not have to hope for fees, so there were no targeted donations for me. The apartment remained in the inheritance from my mother, we sold it in half with my brother, relatives added something, well, loans. Two years we have already given them with my husband from our pensions. The husband said, in any case, we will do the operation, he was ready to put our apartment for sale. ”

According to the rules of the Research Institute named after R.M. Gorbacheva, a patient falling on bone marrow transplantation must be accompanied, because the patient is not able to take care of himself after the transplant. Tatyana’s husband, a disabled person, would not be able to help her in the hospital, her daughter would have to quit her job, so in the end with Tatyana, granddaughter Dasha, who studies in absentia to a geodesist in absentia. In St. Petersburg, she looked after Tatyana, and in her free time, so that she had at least some money, worked as a seller-she sold toys, ice cream.

Tatyana Chernykh

When Tatyana fell on the operation, she had the first positive blood type. Now she has a third positive one - has changed to a donor blood group. Tatyana only knows that this is a girl from Dresden born in 1993, who is suitable for her daughter.

“How was the transplantation? Well, all a person can endure. Weakness, take two steps and gasp, there is no strength. But I had self -confidence that everything would be fine. I am stubborn, even then I did not take a taxi, and she was silently paced. Four times the puncture was made, of course, oh, but I just thought that no one had died from this yet. I was lying in the hospital for forty days, and then I lived in the apartment for several months next to the clinic, and only in September I was released home. I spent six months in St. Petersburg - and after all, for the first time in my life, I was lying in the hospital! From her youth she was engaged in parachute sports, there was a big man. I am a fighter, I'm a soldier! When I found out the diagnosis, I was worried, but there was no panic. ”

there is no such feeling that they gave me a new life

The second time Tatyana came to check in March. In a week I passed all the tests, the results are normal. Now she came to check for the third time with her daughter.

“Nothing has changed much. Everything is forgotten, at first you think that this is a chance, and then everything is dull, the children no longer feel that I have gone through it. Well, they swear a little when I drive around the house or in the garden: “Mom, do you need it?” My husband also scolded me at first that I showed the initiative around the house, but now I was used to it. But when the sun rises, he says: “Fast a home.” I have passed the test in my life, since I’m talking to you now. But somehow everything is ordinary now, there is no such feeling that they gave me a new life. It just continues the old one, and they gave me time to live. ”

Read also The adventure of Gosha Gosha lives in Simferopol. The relapse happened in January 2014. And already in March, his parents had to urgently look for money and quotas for treatment in a completely different country

The disease cannot be predicted, predict. And it is also impossible to prepare for this. Tatyana’s story is very simple and understandable. She was lucky - she was supported by family and friends. And she had something to sell to collect money and pay for what the state does not pay for. But even that was not enough.

The Help Foundation collects funds for the work of six laboratories of the R. Gorbacheva Research Institute in St. Petersburg-the only clinic in Russia where they make all types of bone marrow transplants for adults and children. For the year of work of six unique laboratories, without which the treatment of people like Tatyana would be impossible, 32 million rubles are needed. In addition to us, there is no one to solve this problem.

Tatyana’s story ended well, but the Advita Foundation has many more wards who need our help right now.