Living with Cystic Fibrosis

Living with a chronic disease can be both emotionally and physically challenging. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your care.

 

Tips for Maintaining Health and Wellness

  • Visit the adult cystic fibrosis center approximately three to four times a year
  • Take your prescribed medication
  • Make sure your diet contains the elements to keep you healthy
  • Complete your physiotherapy exercises
  • Contact the cystic fibrosis clinic if there are changes in your health

Physical Activity

 

Physical activity helps everyone feel better. Your health care team will recommend exercise and activities that suit you. Staying hydrated during vigorous exercise is important for everyone but is even more important for people with cystic fibrosis.

 

Stay Healthy

  • Talk to your CF team about annual flu and pneumonia vaccines
  • Avoid people suffering from upper respiratory illness
  • Wash your hands frequently
  • Wear a mask that covers your nose and mouth when in a health care setting 

Diet

 

The thick, sticky mucus your body produces makes it hard to absorb fat and nutrients. A good cystic fibrosis diet is one that is high in calories and high in fat. Our dietitians will help you work out a plan.

 

Mental Health

 

Juggling the symptoms of CF and a complicated care regimen can be overwhelming. People with cystic fibrosis sometimes experience low mood, anxiety and depression, which affect an individual's quality of life. CF team members, including the mental health coordinator, can help you explore a variety of effective treatments to stabilize your mood and improve your quality of life.

 

Complications

 

Adults with cystic fibrosis often find themselves with other complications, including:

  • Cystic fibrosis-related diabetes: this is a common complication for people with cystic fibrosis especially as they age. Common symptoms include:
    • Weight loss or lack of weight gain
    • Fatigue or loss of energy
    • Frequent urination
    • Worsening of pulmonary function
    • Generally feeling unwell
  • Liver disease: Some people with cystic fibrosis over the age of 4 have serious issues with liver function and the biliary system.
  • Osteoporosis: This is the thinning of your bones to the point of brittleness. This will often progress painlessly until you suffer a bone fracture.
  • Nasal polyps: these are small, sac-like growths in the nose caused by chronic inflammation.
  • Blockage in the intestines: thickened stool causes blockage known as distal intestinal obstruction syndrome. Unlike constipation, this blockage is higher up in the intestines. Symptoms include:
    • Fewer bowel movements
    • Vomiting
    • Feeling full while suffering diarrhea

Lung Transplantation

 

For some individuals with advanced disease, lung transplantation might be the next step to help regain health.