The CF Balancing Act
Staying healthy when you have cystic fibrosis requires spending up to four and a half hours a day on treatments, therapies and other must-do’s.
The following masters of multitasking share their tips, techniques and perspectives on managing their CF care while balancing busy work schedules, hobbies and time with family and friends.
Aaron Stocks balances work and life
Stats: Age 24; lives in Washington, D.C.
Multitasking Style: Two birds with one stone
Because I spend most of my time in the office, I have to find creative ways to keep up with my CF treatments and medications, which take about four hours a day. It sounds like a lot, but those four hours that I take to manage my CF care are critical for me to stay healthy.
I also find that managing my perspective on the disease helps me feel my best. I met an adult with CF when I was young and he gave me the best tip: “Consider yourself lucky to have CF, because you will learn to cherish life much earlier than most others come to this realization.”
Here are some techniques I find helpful:
- Mix treatments with fun — When I’m not working, I try to combine activities. I’m a big fan of the Madden football video game, and I have timed it out so that I can finish a game by the time I have completed all of my nebulizers. This way, I actually look forward to doing my treatments.
- Share the load — For me, talking to others with a connection to CF has been a huge help. It’s always great to have someone that you can relate to, learn from and be encouraged by. It reminds me that I’m not alone.
Joan Finnegan Brooks
Stats: Age 49; lives in Boston, Mass.
Multitasking Style: Proactive
Joan Finnegan Brooks finishes her first 150-mile ride.
Recently, I celebrated my 49th birthday and finished my first 150-mile bike ride in the same week. These are not everyday feats for people with CF, and I believe that strictly managing my CF care has been critical to accomplishing my goals.
My philosophy is simple: I do what I have to do so that I can do what I want to do. To help me do what I have to, I like to set challenges for myself and build in rewards. Over the years, I have also learned some tricks to make my treatment regimen a little easier.
Here are just a few:
- Contain yourself — I have multiple pill containers in varying sizes so that I have one for any type of purse I carry or if I want to just be able to slip it into my pocket. It has actually become a lot of fun to collect unique and fun pill cases!
- Cover your bases — If I regularly visit a friend and eat at her house, I will leave a bottle of enzymes there, so I don’t have to worry about it.
- Be creative — When I was in college, I would line either ice cube trays or muffin tins with aluminum foil and make two-month’s worth of “pill packs” with pills needed for each day. Then I could just slip it in my pocket and know I was covered.
- Borrow ideas — Sterilizing nebulizer parts can also consume a lot of time. I have found that baby bottle sterilizers work great for this.
Stats: Parent of Jason, 13, and Amy, 11; lives in Central Connecticut
Jason (13) and Amy (11) Lenihan show their support for Team CF.
Multitasking Style: Structured and organized
My wife, Deb, and I take a very structured, organized approach to managing our children’s daily CF treatment.
For our family, maintaining an ordered routine really helps. But, despite our best laid plans, we know that things can change so flexibility is key.
Here are some of our methods to manage CF care for our children:
- Be prepared — We have created schedules for “normal” days and for “non-normal” days (sleepovers, vacations, sports events, etc.)
- Think ahead — We have plans in place for times of illness and for home IV therapy.
- Put technology to work — I keep track of clinic visits, test results and other health outcomes on our home computer using a Microsoft Access database file.
- Organize — We have developed organizational strategies to make family trips less problematic. For instance, we love to camp. So when we pack our gear, we use food storage containers to transport and store the nebulizers and freezer bags for medications. Since we have two children with CF, we label the containers and bags with each child’s name to avoid confusion.
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