Life of an average 16 year old adolescent with CF

Question

What does an average day look like in the life of an average 16 year old adolescent with cystic fibrosis?

Answer

What does an average day look like in the life of an average 16 year old adolescent with cystic fibrosis?
Adolescents go to school and like to meet their friends. They want to discover new things at their own pace. Adolescents with CF are just like any other adolescent, but the disease demands from them quite a bit of discipline. Every day they need to take their treatment. This will on average take 2 hours. Before they go to school in the morning they need to take medicines by aerosol and do chest physiotherapy. They take a high caloric breakfast together with enzymes to help digestion and a supplement of fat soluble vitamins. Often they have to take another aerosol with antibiotics or antibiotics by mouth. At school they follow the classes like the others. Because they have CF they will more often cough and they may be worried that they disturb the class with this. Because in some of them digestion is not totally normal, they may have to go use the toilet more often than their peers. At lunch time again they take a high caloric lunch together with medication. After school they need to take extra time to again take aerosol, do physio and eat a high caloric meal. Of course like any other adolescent they need to study and have school tasks.
High caloric meals and snacks are needed to maintain normal weight. Adolescents with CF have to avoid places where they are exposed to smoke and this may be a problem. It is important that CF patients stay in good condition so participating in sports is highly advisable. Just as other adolescents they need time to relax, time to spend with their friends and family. They also need sufficient night time rest. So staying out late at night and sleeping very little is tough on their system. If you consider all this you see it is not simple. You can easily understand that there is a difference between what the doctor would like the patient to do and what the adolescent does in real life. Many of the sicker adolescents with CF will have to give up a lot of activities that are so typical for their age. When they have a flare up of lung infection adolescents with CF may need treatment with antibiotics by IV. Often this means staying at the hospital although many will do this therapy at home. Home therapy disturbs daily life less than admission to hospital but it is an additional big burden of therapy.
Whereas some adolescents with CF are rather stable and go to school full time, have hobbies and really lead a life more or less similar to their peers, several sicker adolescents will be unable to participate in sports or to have lots of activities such as parties, shopping etc. They will often be absent from school because of their disease and they may get isolated and feel lonely. There is really no such a thing as ‘an average adolescent with CF’.
A lot of support and understanding from their environment is thus very important for CF adolescents so that despite the big burden of therapy they experience life as positive.
K. De Boeck, M. Proesmans, F. Vermeulen, L. Dupont, M. Moens, K. Sauer, K. Colpaert & CF team

03.02.2009