Tips for Living with Cystic Fibrosis

How to Live a Full Life With CF

Mom and daughter share during discussion group
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Decades ago, cystic fibrosis (CF) was thought of as an early death sentence. Living with CF meant spending much of one’s time struggling to breathe and trying to avoid suffering until succumbing to an untimely death in early childhood. Fortunately, this is no longer the case. Today, people with cystic fibrosis are living longer than ever, usually into middle-adulthood.

Today’s generation is discovering that living with CF means learning to cope, daring to hope, and finding a new normal.

Learning How to Cope With a CF Diagnosis

A CF diagnosis is incredibly difficult and every family reacts differently. Learning that your child has a potentially fatal disease is a life-altering experience. Once the initial shock fades, you can begin to build your toolbox of CF coping skills and techniques to care for your child. 

Here are four items every CF toolbox should include. 

Knowledge. Ask, watch, study, and read everything about CF you can get your hands on. There is a lot to learn, so it's only natural that you will have a lot of questions along the way. Take notes! Don’t rely on your memory, it will fail during stressful periods. Write down any questions you may have in a pocket-sized notebook. Keep your notebook with you at all times and be ready to reference your notes each time you see your doctors.

Support. Get involved with support groups. Connect with other CF patients and their families. Nobody knows what you are going through quite like someone who has already been down the same path. Surround yourself with people who can guide you as you forge your own path.

A plan.  Getting through daily life with CF can be overwhelming.

Become familiar with all of the treatments, medications, and therapies you will need to manage your child's condition. Create a plan that schedules all of these activities –– medications, therapy, other treatments –– into your daily routine.

Strength. You may hear a lot of discouraging words from well-meaning but misinformed people. Remember that cystic fibrosis used to be a lot of things that it no longer is. However, others may not know this. You can educate others about CF, but if you prefer not to that's fine too. Expect to encounter negativity, but don't let it get the best of you. Try and filter out the background noise and listen to those with the most CF experience, like your child’s health care providers.

Planning For a Full Life With CF

Now that you’ve developed a strategy for coping with a CF diagnosis, the next step is to begin planning for the immediate and long-term future. Children with CF can plan for life as adults because we’ve learned better ways to treat CF. Preventing damage from an early age on is the only way to give children with CF a chance to become adults. This is a big responsibility for parents and involves some necessary sacrifice.

Here are three ways to ensure that your child has the best future possible.

  1. Establish a routine. CF treatment usually requires taking medicines before each meal, inhaling medicines a couple of times a day, and having therapy treatments up to four times per day. Fitting these things into your life can be a challenge. However, consistency is the key to success. Scheduling everything you need to do can help save time and ease the burden.
  2. Be diligent. Once you have a routine, try and stick with it. When things get hectic, you may be tempted to skip a treatment or postpone a medication. Don’t do it! Missing even one step of a treatment routine can cause major setbacks. Sticking to a routine will help you stay on course and teach your child good habits for the future.
  1. Learn to juggle. Many parents of children with CF find that they become so consumed with their child’s needs that they forget to take care of their own. Don’t let this happen or you will quickly run out of steam. CF is a lifelong commitment. It’s not going to go away. You’ll need to find ways to make it a part of your life without letting it be your entire life.

Learning to live with CF can be stressful for everybody involved, but it is often terrifying for siblings who may be too young to understand what living with CF means. Older siblings may fear that their brother or sister is going to die, be jealous of all the attention their sick sibling gets, or feel guilty that they are healthy and their brother or sister is not. It’s important to include siblings in the equation, making sure they don't get lost in the shuffle.

Discovering a New Kind of Normal

Life changes after a CF diagnosis. Even after your child has reached adulthood, CF will still play a big part in your life. Your child may require some help with physical care even as he or she gets older. Plus, you will still need to consider their treatment schedule when planning family events.

With a few tweaks here and there, your child can live a relatively normal life. People with CF can go to school, have friends, play sports, get married and have children, and even have a successful career. 

You can dream big even if you, or your child, have CF. Set short-term goals to help you accomplish your life plan, but be flexible. You may need to make some adjustments along the way.

Carpenter, D.R., & Narsavage, G.L. (2004). One breath at a time: Living with cystic fibrosis. Journal of Pediatric Nursing. 19, 25-32.

Havermans, T. & De Boek, K. (2007). Cystic fibrosis: A balancing act? Journal of Cystic Fibrosis. 6, 161-162.