Elena is 49 years old and she has cystic fibrosis. It’s 49 years of endless struggle, 49 years of his life very strong man. Today, the disease progresses rapidly, and Elena can’t breathe without an oxygen concentrator, she gasps. Elena really needs to live, she has two children – 9 and 13 years old – beloved husband, house, friends, work. She continues to struggle. Let’s help her out.
Elena Kuzmina. Photo: Ekaterina Gushchina
- And all of a sudden breaks down oxygen concentrator, and a lung transplant is still far
- “Waiting for a lung transplant to play with my grandchildren at the ball”
- “The first 7 hours of operation we will get to the heart”
- The results of the drug denied – but the parents for the past 7 years fighting for her son’s life
- A strange chill in the heart, and unsubdued Elbrus
You look so good for this disease
In the 70-ies in the far East, in Blagoveschensk, no one never heard about cystic fibrosis. And when brother and sister Helen died in childhood, the doctors wrote certificates of death “pneumonia”. Wrote three – in the family died three children. Elena survived.
Doctors who have watched the girl at first, too, predicted the fate of her younger kids, told my mom: “do you Have children do not stay long in this world, and this very weak will not survive.” But Elena, often aching, coughing and temperature, first outgrown infancy and then teenage. At some point, Mama Elena breathed a sigh of relief: it seems, will survive.
She didn’t know, and no one in Blagoveshchensk did not know that cystic fibrosis “outgrow” it is impossible that it is a disease that gradually progresses. So the older she has gotten, the more often she ended up in hospital with severe bronchitis and respiratory insufficiency.
What diagnoses did not put Elena. Tuberculosis, pneumonia… In the end, the doctors wrote in the conclusions “lung disease of unknown etiology” and sent Helen home.
Gradually the world changed, and information about rare diseases beginning to reach the Far East. But then Elena who already lived independently, worked as a lawyer and was getting married, no one was diagnosed with “cystic fibrosis”. However, to establish the diagnosis accurately in Blagoveshchensk was impossible – the genetic analysis was done only in Moscow. So the doctors determined that Elena is sick with cystic fibrosis, “eyes”: “You look so good for such a terrible disease. You’re not sick, it’s a mistake”.
I went to the hospital with a cough and left with a cough
Elena doctors believed and also concern over the bill, though about cystic fibrosis read. What is a genetic disorder caused by a mutation of the gene affects cellular salt metabolism. And because of this failure produced an increased amount of thick viscous mucus, clogging the ducts and marvel at all the slime organs – lungs, bronchi, liver, intestinal glands, sweat, sex and salivary glands. To hurt such a terrible disease Elena did not want, and go to Moscow to check back, was expensive – you need money on the road, on examination, to housing… Maybe the local doctors are right? Just cold, just frequent bronchitis, just so Elena fell on the share of difficult, painful life.
When Elena turned 36 years old, she learned that waiting for the firstborn. Now just hope she is not cystic fibrosis, it was impossible – too much responsibility for the future son. In the Annunciation the hospital finally sent him to Moscow. The house they got married to put all of my savings will be enough for genetic analysis? Elena went to Moscow. Genetic analysis and a sweat test confirmed that she had cystic fibrosis.
The boy was born perfectly healthy, but the pregnancy affected the health of Helen. “Now, when there was exacerbation of bronchitis, I went to the hospital with a cough and left with a cough,” she says. But Elena went every year to Moscow to be treated in your office by your disease and get your required in cystic fibrosis, antibiotics. So that life was still possible.
Transplantation frustrated because Elena was diagnosed with cancer
In 40 years, Helen gave birth to her second child – a girl. This is also quite healthy. As the cystic fibrosis progressed faster. Two years ago, in winter, Elena picked up the infection – the kids are sick and they are sick and Elena. But in cystic fibrosis to be sick does not. Infection Elena was tormented for several months, and in April went to the hospital with acute respiratory failure. Then the doctors began to talk with Elena about lung transplantation.
Last summer, Elena took a Commission and joined the waiting list for a transplant. And in February she was told that a possible donor was found. Started surveys, tests, and then Elena showed bowel cancer.
Probably, in that time, it was a terrible blow, but now Elena says quietly accomplished. Yes, cancer is incompatible with transplant – the transplanted organ suppresses the immune system, and cancer develops very quickly.
Yes, Oncology is not put on the wait list, stable remission to the new formulation should last 5 years.
Yes, she is going to fight to defeat cancer and to wait 5 years for a new transplant.
Today Helen had a tumor removed in the gut, she is undergoing chemotherapy and will soon be discharged home to wait for a long 5 years.
For the patient with a diagnosis of “cystic fibrosis” this is really a very long time. But we can help Elena to live these five years, without choking. Helen needs an oxygen concentrator – an apparatus for the saturation of the organism with oxygen, which produces a flow of oxygen at 15 liters per minute. The family has no money, by all means “ate” cystic fibrosis and cancer. Let’s help Elena to survive until transplantation.
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