On the clock 5.20. I get up to give my son the medicine. This is the only time he can take them. Two hours before or after a meal. He swallows the pill while balancing in half asleep. I measure the temperature – everything is fine. I can sleep for another hour. It seems that I just put my head on the pillow and now I have to get up.
– What time is it? The child asks. He knows which one, but he wants to lie down for even a minute.
“Same as yesterday,” I reply, tugging at him. On three jumps out of bed, my stomach is rumbling, but inhalation first, otherwise it recedes during gastric drainage. You have to pat well in the morning. Stas tightens his muscles, he cannot relax, he feels every blow, he automatically covers his chest. I look at my watch, I can’t slow down, time is running out. There is a cough coming out of his larynx – still weak, the phlegm is not breaking away – prolonged exhalation with pressure on the chest turns his face purple, I wave my arms, I release the pressure, slowly takes air, deep, deep into the lungs, long cough, inhale and again cough – there is, I can hear phlegm tearing away – spits out. We repeat the action several times. Drops of sweat appear on the forehead, it cleans the nose, sits down tilted forward. Enough.
Already on 7.10. Staś changes the nebulizer, he has to inhale another drug. I pour milk and conditioner over a heaped plate of breakfast cereals. Next to it, cream cheese, a slice of sirloin, a roll, two delicacies, and something stronger in the glass: a handful of medications every day. This will allow Stas to get back on his feet. Loses a lot of energy during drainage. The inhaler stops growling. Just two more puffs and she can eat.
Stas has individual teaching. There are times when she goes to school, but it’s not good for her health. In such a case, injured inhalations and drainage are not very effective, he comes back from school weakened, with abdominal pain, headache, and the symptoms of the disease become more frequent.
The first lesson comes to an end. Time for salt inhalations. Then another lesson.
Stas worked with the flutter, spat out what had stopped. We can go for a walk in the park. He puts a few sandwiches, bars, and a medication kit into his backpack. He loves the natural environment. He dreams of night expeditions, completes equipment, goes to the forest with his friends, but as long as he does not have an inhaler with a battery, a longer trip becomes impossible. We come back from the park at 16.30:XNUMX pm, he has to take another drug. A friend comes to Staś, they play chess. Inhalation is then more pleasant. He takes five breaths mechanically, holds his breath, and continues to empty the nebulizer.
At 19.00 p.m., a half-hour drain would look like torture in the description. The patted, sweaty, salt-streaked body soothes in the herbal bath, ending under a stream of cold water with heroic screams: cold water toughens me!
Stas cannot go to sleep yet. At 21.30 inhalation again. Before going to bed, he drinks a cup of conditioner. The night must work to his advantage. At 0.30 I can go to bed. We had another peaceful day.
Cystic fibrosis is one of the most common genetic diseases. Virtually all patients suffer from changes in the respiratory system. Their cause is the mucus in the bronchi, which is an excellent breeding ground for bacteria, which in turn cause chronic inflammation leading to further bronchial and lung damage. Therefore, the prevention and treatment of respiratory tract infections is considered essential. Prevention consists mainly in administering the so-called mucolytic drugs to liquefy bronchial secretions. These drugs are usually administered by inhalation.
People with cystic fibrosis are very prone to respiratory infections. In periods of intensification of inflammatory processes, long-term therapy with antibiotics administered orally, intravenously and by inhalation is used. The final stage is lung transplantation.
Typical for cystic fibrosis is also exocrine pancreatic insufficiency (affecting 80% of patients), which requires lifelong intake of enzyme preparations. Due to the fact that most patients show symptoms of malnutrition, a high-energy and protein-rich diet is also very important. Digestive disorders require most patients to supplement their vitamins by administering appropriate preparations.
As sleep envelops children with cystic fibrosis, their parents have time to reflect. They will never be free, their life revolves around cystic fibrosis. Millions of thoughts, Millions of questions: How long will we have the strength to support our children? How long will we be able to afford their treatment? How long can we tear them out of death?
Cystic fibrosis is an incurable disease and leads to premature death. Its early diagnosis and the early initiation of correct and systematic treatment are decisive for the quality and life expectancy of sick children.
The monthly cost of maintaining a child with cystic fibrosis in a relative psychophysical form ranges from several hundred to several thousand zlotys spent on drugs and supplements alone.
MATTHEW Foundation for Help for Families and People with Cystic Fibrosis ul. Celna 6, 30-507 Kraków tel. 12 292 3180
KRS 00000 97 900
Tekst: Ewa Wróbel