Practical Tips for Living with Cystic Fibrosis
Reviewed by: HU Medical Review Board | Last reviewed: September 2019
Life with a complex, chronic condition such as cystic fibrosis (CF) can be challenging sometimes, especially when the two to three hours of treatment per day get in the way of other activities. The main priority in living with CF is sticking to your treatment plan to reduce symptoms and slow progression of the disease as much as possible. However, many lifestyle tips and tricks can help improve quality of life for the person with CF and their loved ones.
Practical tips
People with CF and their families quickly become adept at finding clever ways to balance all the needs of regular life with those of cystic fibrosis. These practical tips can range from the most efficient ways to clean breathing equipment and managing medication schedules to advice for increasing calorie intake in an uncooperative toddler.
Other families can help you learn the best ways to travel with CF equipment and how to balance caring for a child with CF with the needs of your other children. Connecting with other CF patients and families can help you find the tips you need to make life easier.
Infection prevention and control
Infection prevention and control plays a huge role in keeping a person with CF as healthy as possible. Your CF treatment team and fellow CF families can help you find and maintain the right combination of techniques for handwashing, disinfecting nebulizers, keeping the house clean, and avoiding potentially germy leisure activities such as swimming, gardening, DIY home improvements, or going to the gym.
Avoiding contact with other cystic fibrosis patients
Research shows that germs spread exceptionally well between people with CF, and so the 6-foot rule was developed. The rule says that people with CF should avoid both direct and indirect contact with others who have CF.
In addition to remaining at least 6 feet apart, people with CF should avoid shaking hands, kissing, or hugging, and should cover their cough. Spreading germs between people with CF is called cross-infection and it leads to worsening symptoms and a rapid decline in lung function.1
Costs and insurance
As with any long-term chronic illness, health care costs are high. About 50% of people with CF are covered by private insurance and 50% are enrolled in federal or state-funded programs (Medicare and Medicaid). Even with insurance, many costs are not covered so families must find a way to pay for these extra expenses or forgo treatment.2
Transitioning from pediatric to adult care
Moving from the family-centered care of a children’s hospital to the more self-directed care of an adult facility is a complex process and preparation for this change should begin as early as 7 or 8 years of age. For the transition from pediatric to adult care to be successful, it should not happen abruptly. The transition should take place over years with the full participation of the patient, their family, and the medical team.
Transition can be stressful for the patient and caregivers alike, especially if done too quickly. However, building a strong relationship with the new adult care team directly impacts the person’s long-term health for the better.
Working with your child’s daycare/school/camp
Everyday kid activities include going to daycare or school, staying overnight with friends, and going away to camp. Such activities let your child have fun while learning independence, building social skills, and giving your child a sense of normalcy.
It also requires substantial preparation and planning on the part of caregivers. Whether they visit a friend’s house or go to elementary school, you’ll need to talk to parents, teachers, and camp organizers about the need for infection prevention and control, your child’s treatment regime, and how important both are to your child’s health.