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People with CF and Caregivers Share Perspectives on Maintaining CF Therapy as Part of a Daily Routine

 

July 24, 2017

By Chelley Casey

For people living with cystic fibrosis (CF) and their caregivers, different stages of life present unique needs and challenges to maintaining a daily routine. How do you educate your young child with CF about the treatments they must do each day? If you are a teen with CF, how do you ensure school and extracurricular activities don’t interrupt your routine? When it’s time for college, how do people with CF adjust to their new surroundings—and how do their parents prepare them to maintain their routine away from home?

These are some of the topics discussed during the All in for CF Community Roundtable on maintaining CF therapy as part of a daily routine. Gunnar Esiason, the program director of the Boomer Esiason Foundation who is living with CF, moderated a panel of people with CF and caregivers in a discussion offering their take on the subject.

Panelist Lesley Lykins is an executive director of a nonprofit and navy reservist who is the mother of four, including five-year-old son Cohen who is living with CF. To her, establishing a daily routine and sticking to it is critical—from brushing teeth to taking daily medications. This requires relying on a support system of grandparents and babysitters who need to be educated about Cohen’s daily therapy. (She keeps a summary of his daily routine on the computer so it can be easily updated, printed and shared as needed).

The routine starts with the important aspects of treatment that have to happen every day. “We do airway clearance twice a day, at a minimum, no negotiating. To make that happen, we need to have one of them done before noon, that’s drop dead, and one of them before bedtime,” Lesley said. 

Getting the entire family involved has been helpful and Lesley compares teaching children with CF how to do their daily treatments with teaching children how to be consistent with other daily tasks, like helping with laundry or making their bed. Keeping in mind that children are capable of different levels of involvement depending on their age, Lesley explained that Cohen is involved in aspects of his care like putting on his airway clearance therapy vest and knowing when he takes certain medications.

Gunnar shared that his family took a similar approach when he was growing up. “When I was Cohen’s age, the way my parents developed that routine, and made me stick to that routine, was to socialize treatment time. I was never alone when I was doing treatments. Whenever I did my treatments, it was always in a common space and I was doing them with other people.” 

But even with a well-planned process for managing CF therapies each day, disruptions are unavoidable. 

“When we’re out of our normal routine, it comes down to doing those drop dead things that have to happen every day,” Lesley said. Sometimes that means doing airway clearance treatment at fast food restaurants while driving on family road trips.

As children with CF become teenagers, maintaining CF therapy as part of a daily routine becomes even more complex balancing academics, extracurricular activities and time with family and friends.

Gunnar shared that managing his treatments while he was in high school was particularly challenging because the daily schedule was so structured and there are only so many hours in the day to fit everything in.

Wells Clark, a 16-year-old high school student with CF agreed, but offered no excuses. “You have to do your treatments every day, no matter what,” Wells advised. 

For Wells, having family and friends who understand his daily routine and can help him stay with it is important. Teachers and coaches are educated about CF so they know what to expect from Wells and how to help if he needs it. 

“As you get older, your support system expands from just your immediate family. It has to include your friends, your teachers, your coaches—people who are with you at all points of the day,” Gunnar said.

Perhaps the biggest change in maintaining a daily routine is when a young adult with CF goes off to college. Assuming more responsibility for daily care at a time when people are meeting new friends and living in new situations isn’t easy, but the panelists offered some good advice.

For Jeanine Samels, a lot of planning went in to preparing her 20-year-old daughter Maggie to manage her care during her first year of college.

“I was a hot mess for a long time right before she went away, just a lot of anxiety about letting go was really hard,” Jeanine said. But after working together and with the university, Jeanine became more confident. “Once she got down there and I knew she was OK and she was settled, I really was at peace with, and was happy and proud, that she took that responsibility and did so well.”

It was an adjustment for Maggie too—getting used to new classes, living her first year in a single dorm room then moving into a house with 120 sorority sisters her second year brought a lot of change. “In high school I had my schedule. I woke up, I went to school, I played soccer, I came home and did my treatments. It was the same thing every day,” Maggie said.

“My doctor gave me some very good advice that I should schedule my treatments as if they are a class or as if they are a meeting. She told me to put them on my calendar on my phone each day. I had an alarm go off telling me that I had to do my treatments and that really helped me.”

The topic resonated with members of the CF community watching the livestream prompting questions asking for advice on making time for treatments at the end of a busy day to tips on the universal challenge people with CF and their caregivers face packing for trips. (Check out Gunnar’s helpful blog post on the subject)

For information on upcoming All in for CF Community Roundtables please register for updates here.