Living with cystic fibrosis
The cystic fibrosis diet
It is more difficult for people with cystic fibrosis to absorb energy and nutrients from food, so their diet should compensate for this by being higher in kilojoules, fats and nutrients.
Digestive enzymes made by the pancreas help the body digest food by breaking down fats, proteins and carbohydrates. For many people with cystic fibrosis, mucus blocks the ducts that carry the enzymes from the pancreas to the digestive system.
People with this symptom need to take enzyme medications (such as Creon) to assist their digestion.
Physiotherapy
Physiotherapy exercises help clear the thick, sticky mucus that the body produces from the lungs and airways.
A cystic fibrosis physiotherapist will develop a physio treatment plan suitable for the individual.
Being physically active is also beneficial for maintaining lung function, assiting with airway clearance, preserving muscle strength, improving chest mobility, appetite and body weight as well as bone strength.
People living with cystic fibrosis lose a particularly high level of salt through their sweat, especially when exercising. This causes an increased risk of dehydration and electrolyte imbalance, so in situations where sweating is increased, they need to replace the salts they are losing.
Medications
There are many different medications and treatments for cystic fibrosis. These treatments are often quite time-consuming. Treatments change regularly and vary depending on the severity of illness in each individual.
Daily respiratory medications are aimed at clearing thickened secretions, opening airways and preventing or controlling respiratory infections.
Some common types of medications that a person living with cystic fibrosis may take include:
- CFTR Modulators
- Bronchodilators – e.g. Ventolin puffer
- Anti-inflammatory medications
- Antibiotics (oral, nebulised or intravenous)
- Steroids
- Pancreatic Enzyme replacement supplements (CREON)
- Salt replacement tablets or drink
- Vitamins
- Other nebulised medications
- CF related diabetes medications
Infection Control
Respiratory viruses, bacteria and pathogens are highly contagious to people living with cystic fibrosis. It is important to reduce the spread of germs and bacteria.
Good Infection Control Practices include:
- Good hand hygiene (hand washing, coughing/sneezing into elbow)
- Access to adequate handwashing facilities
- Following recommended cleaning practices
- Limiting exposure to sick children
- Avoid sharing water bottles/food
Children living with cystic fibrosis should be encouraged to take part in all usual school activities and sports/games for their physical and emotional health – some out of classroom activities may carry extra risks.
Environmental factors
Bacteria found naturally in the environment, that don’t pose a risk to people without cystic fibrosis, can cause infection in people living with cystic fibrosis. These bacteria are commonly found in stagnant water, mould and soil. Once contracted, they can be difficult to treat.
Mental health
Good mental health is an important part of treating cystic fibrosis, both for people living with cystic fibrosis and the people around them. Mental health impacts on physical health, and conversely physical health also affects mental health. You can’t treat one in isolation from the other.
Find out more about looking after your mental health here.
If your feel that you need to explore options for professional help to work through intense emotions and overcome obstacles, visit Beyond Blue.
