In order for a mucoviscidosis patient to live a long and good life with no infection, he/she needs the following treatment EVERY DAY:
- Enzymes (Kreon) – they need to be taken before each meal, even before breakfast. Otherwise, food will not be absorbed well and this will result in not only a stomach ache, but also in a general exhaustion of the organism due to malnutrition.
- Food additives (Fresubin) – they support the immune system and the organism and help it work like that of a healthy person overcoming the poor food absorption.
- Mucolytics – they dissolve the thick and sticky mucus secretion collected in the lungs. They can be inhalatory (Pulmozyme, Natrium Chloride 7% or 8%, Mistarbon), oral (ACC, Geromyrtol Forte, Mucosolvan, etc.) and intravenous (Bromhexine)
- Bronchodilatators – (Ventolin, Albuterol, Atrovent, corticosteroids) – they dilate the airways to improve breathing
- Lung drainage – a special massage on both sides of the lung which aims to take out the lung secretion in which bacteria grow and cause infections. Drainage vests able to remove secretions from the lungs every day were developed a couple of years ago. They increase life expectancy and add more quality to life – bringing it closer to that of a healthy person. There are no physiotherapists or doctors in Bulgaria who are familiar even with the manual drainages. To the best of our knowledge, there isn’t even a single drainage vest in our country. Its price is about 16 000$. http://www.thevest.com/
- Antibiotics inhalations - (TOBI 300, Kolistin);
- Regular preventive antibiotics treatment with new purified and expensive antibiotics. Every 3-4 months an intravenous antibiotics treatment lasting 14-21 days is applied regardless of the patient’s condition and in ever higher dosage. This is done to suppress the bacteria in the lungs and to protect the lungs from new bacteria. Once incurred, lung damage is irreversible.
- Respiratory exercises (not a single patient in Bulgaria knows how to do them), vitamins, minerals, calcium, high-calorie food. There are many fat-soluble vitamins used specifically to help people suffering from mucoviscidosis, but they are not available in Bulgaria http://www.aquadeks.com/
Lozi is one of the persons who need all of this to feel good, to work, to live as a normal person and to feel complete. She needs all these medications and therapies to prevent her condition from getting worse and her lung functions from growing weaker every day.
What the treatment should be like – an example of a boy from the US
