Blood enmity

People who survive leukemia need a blood irradiation apparatus

We help the prevention of complications during bone marrow transplantation collected 3,862,445 R required 3,750,000 r

The collection of funds is over

He is in Samara, she is in Moscow. He has a son, she has a daughter. He cannot walk, because the skin on the legs peels to the blood. She cannot walk, because the muscles of the legs were atrophied, and the lungs work only half. They both overcame blood cancer and found bone marrow donors. Which now kills them.

They learned to treat leukemia. Bone marrow transplantation is a simple and effective operation. But people still often die after her. And not from the fact that the donor bone marrow does not take root. And from the fact that, having taken root, donor stem cells attack the recipient’s body, considering it a foreign body. This is called the reaction "transplant against the owner." And this is not easier than cancer itself.

They are 34 each. These young man and a woman should now be in his prime. They have families, they love to work, and really want to live. Instead, they fade away. He is slow, she quickly.

Slowly

“I googled, and they don’t seem to die of it,” Alexander tries to joke. - But how to live like this all my life - I do not know. This is daily flour. ”

Young and strong Alexander worked in Gazprom in Samara, was a successful young specialist and just married. Perhaps the only thing that overshadowed the life of a 27-year-old guy was two-week business trips to the north-his wife managed to see only two weeks a month.

left: Alexander Igumnov at work
right: Alexander with son photo: from personal archive

When, during the next such business trip, Alexander felt weak, and the temperature rose, he thought that it was ordinary flu. If not for the mother -in -law who did not like his pallor, he would not have thought to donate blood for analysis. She worked as a laboratory assistant in a military hospital and literally forced him to donate blood. When I saw the result, I burst into tears. She did not know the details, but the analysis was so bad that it was terrified. Later they diagnosed with acute leukemia. It was seven years ago.

Optimist by nature, Alexander was not very scared of the diagnosis. Five courses of chemotherapy suffered well. Life has not changed a lot, except that it stopped dangling north and a donkey "on the Great Earth." I perceived the side effects of chemistry for granted. The wife supported everything. Then the doctors ascertained remission. If cancer does not return within five years, the patient is considered recovered.

Three years passed, Alexander was invited to work in the Spanish oil company Repsol in Moscow, and he and his wife moved. The son Yegor was born. Time passed, everything was fine, and the family almost forgot about the disease. True, the hip joint began to bother. Doctors said that this is a frequent consequence of chemistry, and the joint must be changed.

Four and a half years passed after chemotherapy, another six months, and Alexander would be considered healthy

It is necessary, Alexander thought and lay down at the Central Institute of Orthopedics for the operation. He was changed the joint to a new, iron. The company helped with money. The operation went well, the doctor forced him to get up the very next day, and a month later, Alexander returned to work. Doctors warned that the same problem with the second joint, and in a few months it would also need to be changed.

The term of the second operation approached, and with planned blood donation, it turned out that the leukemia was returning. Four and a half years passed after chemotherapy, another six months, and Alexander would be considered healthy. Strange irony, he thought. The most difficult thing was to say to the family. The replacement of the second joint had to be postponed, and the wife asked everything, well, when the operation. It was impossible to hide endlessly, and he told everything.

It was very difficult. So many years of fighting cancer, and he returns. The life of the young family changed sharply. We decided to return to Samara and go through a new course of chemistry there. Grandparents could look after the one -year -old Yegor, while Valeria was all day with her husband in the hospital. The plan was: see how the body reacts to treatment, and look for bone marrow donor.

Alexander with his wife and son photo: from personal archive

For the first course of chemistry, Alexander answered well, and began to do the second. And then the leg fell ill - the one in which the joint was never changed. So much that for several days he did not sleep in pain. It was necessary to urgently change the joint. Fortunately, after the second course of chemistry, blood parameters returned to normal, and the joint was changed successfully. Alexander paid for the prosthesis himself, and the operation was done for free.

Then the search for the donor began. In the national register, they did not find suitable donors; I had to contact the European one. It cost 18 thousand euros. While looking for a donor there, Alexander went to the third course of chemistry.

The donor was found in three months - this is very fast. Transplantation was done in Moscow in November 2014. The operation itself is not complicated and resembles a blood transfusion. A bag with a bright scarlet liquid flew from Germany.

“Then I only thought about the donor cells to take root. It seemed to me that this is the most important. But I could not even imagine how much I was mistaken. ”

The most dangerous in transplantation is complicating complications. In particular, the so -called reaction “transplant against the owner” (RTPH). This is when the donor bone marrow takes the recipient’s body for an alien body and begins to attack it. RTPH is manifested in 50% of cases of related bone marrow transplantation and in 80% non -treasured. The acute form usually develops during the first three months after the operation, and the chronic reaction occurs later and can last throughout the patient's life.

So it happened with Alexander. When everything was fine during the first hundred days, the family finally breathed a sigh of relief. The worst seemed to be behind. But then the skin on the legs and arms began to peel off, and the mucous membranes began to dry. Doctors noted the chronic RTPH.

Alexander does not lose hope photo: from the personal archive

And even then Alexander thought that the worst was behind. Well, what is leather and mucous membranes in comparison with life? But everything turned out to be more complicated. To reduce immunity and reduce the attack of the donor bone marrow, immunosuppressors, including prednisone, prescribed. It greatly suppresses the immune system and does not affect bone tissue poorly, from this Alexander’s legs with artificial joints hurt, and he cannot walk.

It turns out a vicious circle. Or it is impossible to eat, because the tongue is all in ulcers, eyes dry, hands are itching, legs burn and it is impossible to walk, because the skin on the heels gets off. This is if not drinking prednisone. Or, if you drink, constant diseases, impenetrable bronchitis, infections, high temperature with almost killed immunity. And it is difficult to walk again - because the problem with the joints.

At some point, Alexander was exhausted from the side effects of steroids and decided to quit them. But the symptoms of RTPH were unbearable. He could not eat, because the language turned into a mess, and lost 20 kilograms. I could not open my eyes, the mucous membranes burned like fire. The skin got down to blood, and it was impossible to walk or lie down. And he returned to the pills.

He could not eat, because the tongue turned into a mess, could not open his eyes, the mucous membranes burned like fire

Fortunately, there is a way out of a closed circle. It is called photoreza - this is when the patient is taken and irradiated with x -rays in a special apparatus, and then poured back. As a result of irradiation, leukocytes lose the ability to attack human immunity, and RTPH passes.

Unfortunately, in the largest hematological scientific center in Moscow, where most bone marrow transplantations are made for adults, there is no device for photoferez. If he were, in 70-80% of cases, it would be possible to prevent complications and significantly improve the quality of life.

850 days have passed since the transplant. Alexander thinks. He hoped that a new life would begin with new blood. But for now, it is rather a slow death.

Fast

“Nadia ... you remember ... what ... the seventh ... lesson ... English ...” Lyudmila tries to speak with her daughter faster on the phone. After each word, it pauses to catch your breath. A minute takes one phrase. There are not enough lungs even to speak.

Lyudmila is carried in a stroller, because the muscles and joints atrophy from immunosuppressors, and she cannot move itself. The car can no longer drive the car. Fragile and weak, it looks like a shadow of herself. A year ago, the donor bone marrow first saved her, and then began to kill her.

The donor bone marrow first saved her, and then began to kill her

After the New Year holidays, in early 2015, always healthy Lyudmila had a back, and she went to the doctor. She worked as an accountant and sinned on a sedentary lifestyle. The doctor did an X -ray, found nothing and said that everything was in order. Then the heart fell ill, according to the sensations, and she again went to the doctor. They made an ECG, and again everything is fine. By April, I again felt ailment. They did a blood test and said-some kind of oncology.

Lyudmila Gnetova with her husband photo: from personal archive

It was Friday. On Saturday, they said that this is blood cancer. On Sunday, hospitalized. She suffered four courses of chemotherapy well, only sadly, not to see the seven -year -old daughter Nadia for a long time. Then the remission began. They began to look for a donor. Started with his brother, he did not fit. Unlike Alexander Lyudmila, it was possible to find a donor in the National Register. Lyudmila was delighted, thought she was lucky.

Already in November, a bone marrow transplant was made. Everything went well, and on New Year's Eve she wrote out, considering herself a almost healthy person. But in January there was a relapse - the bone marrow did not take root. They made a repeated planting of donor cells, and this helped. The bone marrow has taken root, and the blood type changed from the first to the second.

After the first transplantation, all the doctors said: the symptoms of the RTPH would begin as soon as possible. This would mean that the donor material has taken root. Lyudmila was also waiting. Then it seemed that if the bone marrow has taken root, the worst would be behind. But when she waited, she cursed everything.

left: Lyudmila after several chemistry courses, before bone marrow transplantation
Right: Lyudmila this summer photo: from personal archive

It began with the skin - she peeled and peeled off. Then all the mucous membranes became inflamed. Then the intestines refused, and it was already hard. Large doses of hormones and steroids a little stabilized the situation. But then the defeat of the lungs began. This is an acute form of RTPH. So far, the lesion process somehow manages to restrain, but it is not known how much. The last time Lyudmila lay in the hospital a month after severe bronchoscopy. Recently issued. Doctors can almost help. They say that now you need to learn to walk again, breathe and get used to cope with the volume of the lungs that is still healthy. Lyudmila will never be able to jump, run and dance.

"I ... do not know ... on ... what ... more ... hope ..."

A device for photoferez can save Lyudmila, Alexander and hundreds of other people life. It is needed in a hematological scientific center in Moscow and is urgently needed. It costs seven and a half million rubles. This is a penny for the Ministry of Health, which says that there is no money for this. This is a lot for one person. But this is quite feasible if you drop it all!