Managing Daily Routines and Treatment Schedules with Cystic Fibrosis
Scheduling and managing the complex needs of a person with cystic fibrosis (CF), whether done by a caregiver or the individual, takes time. The average person with CF spends 2 to 3 hours each day going through their regimen of treatments when you include all treatments plus time for nutritious meals and fitness. Add in school, work, and family time and it’s easy to understand why time management plays such a huge role in successfully living with CF.
Your treatment plan and its parts
Treatment plans are highly individual, but almost all include some combination of the following:
A routine makes it possible to fit each component of the treatment plan into the day, from eating a high-calorie diet to clearing airways and taking medications. Consistent dedication to your treatments may mean fewer hospitalizations and exacerbations and helps preserve lung function, which contributes to a longer, better quality of life. Your CF care team can help you develop a schedule that works for you.
Time for airway clearance
In children with CF, airway clearance techniques generally take 15 to 30 minutes, twice a day. Airway clearance may need to happen up to four times a day if the child gets sick.2 Adults with CF average 41 minutes per day on nebulizer therapy, 29 minutes per day for airway clearance, and 29 minutes per day for exercise.3
Tips for cystic fibrosis time management
Establishing a routine and sticking to it requires trial and error, especially since every individual’s treatment plan is slightly different. Here are some tips to help you manage your treatment plan:
- Once your airway clearance routine is established, enter reminders on your calendar as appointments. This helps you remember and prevent getting so busy that you skip treatments.
- Set aside time at the beginning of each week to review upcoming activities so you can adjust treatment times or events as needed.
- Set reminders on your phone for airway clearance, medication refills, and appointments. There are many apps that can help with this. One app, MediSafe, includes a list of all your medications and sends you personalized reminders when it’s time to take the next dose. It also sends caregivers real-time missed medication alerts.
- Keep a list of challenges you face with your treatment plan. Your CF care team probably has suggestions to help, or they may need to change some aspect of your plan to fit your life better.
- When caring for a child with CF, some families find that it helps for one parent to perform the morning routine and while the other takes care of the evening routine.
- Build fun into your treatment plan. Some people watch a favorite television show during airway clearance or reward themselves with a treat for sticking to their plan.
- Involving the whole family in the routines of CF care facilitates sticking to the regimen and provides companionship and distraction during breathing treatments.1,2
Several phone apps exist to help gather all of your reminders, schedules, appointments, test results, and notes about how you’re feeling that day. The CF Foundation offers a template for daily record keeping of diet, enzymes, treatments and symptoms.4