7 habits that helped me comply with my CF treatment regimen
Learning to delegate, multitask, and accept aid kept me functional in my roles
Having two rare mutations that cause my cystic fibrosis (CF) has been a small blessing for me. It’s true that I’m unable to participate in many clinical trials that might have given me access to new medications; that’s because I don’t have a copy of the delta-F508 mutation, one common in CF and required by many trials. But on the positive side, my rarer mutations are probably behind the trajectory of my milder CF symptoms growing up.
Despite the more severe problems I’ve been able to avoid, I’ve still had to take care of myself while living with CF and, now, navigating life after my bilateral lung transplant in 2020.
Over the years, I’ve been lucky to serve in many roles besides CF patient, including those of mother, nurse, wife, daughter, sister, and friend. Balancing all those responsibilities can be exhausting and challenging. Following are some ways I stayed compliant with my CF treatment regimen so I could maintain those roles.
Habits that helped
1. CF made me an early bird. I’d set my alarm 30 minutes earlier than normal to do my nebulizer treatments. I also used my Electro Flo 5000 Airway Clearance System for chest physical therapy (PT) before getting out of bed. I kept these machines at my bedside so they were easy to use even when I was still half-asleep. As part of these tasks, I used a face mask for nebulizer treatments so the medications would treat my upper airway, sinuses, and lungs. This bedside plan came in handy if I ended up dozing back to sleep.
2. I always made sure to schedule fun time. When my daughter was young, I’d set up a fun activity for us to do together during my midday breathing treatments. Coloring books and crayons was a favorite of both of us — and a quiet activity, as well.
3. I would maximize my lunch breaks by taking the time to use my nebulizer machine. At one job in a corporate park, I walked outside at lunch. At another, I joined an employee gym and exercised on my break.
During mild CF exacerbations, I also took the self-timed IV ball of antibiotics to work. I normally used it in the break room by threading the PICC (for peripherally inserted central catheter) line under my sleeve. That way I could keep the ball of medicine in my pocket as I worked.
4. Delegating responsibilities was crucial. I asked for help at home, sometimes having my husband and daughter help prep, cook, or clean up after dinner. I also recruited them to help with laundry sometimes. This assistance allowed me to get in a third session of chest PT, exercise, breathing treatments, or rest.
5. Multitasking helped a ton. I used my nebulizer machine or ran an IV antibiotic while cooking dinner or packing everyone’s lunches for the following day. Many times on the weekends, I did my breathing treatments or my chest PT vest while walking on the home treadmill. In my last job before I transitioned to full-time disability, I had a telecommuting position, which allowed me to do most of my treatments while working on the computer.
6. As my illness progressed, I worked with my company’s human resources department to establish my intermittent use of the Family and Medical Leave Act. I took advantage of this policy without penalty when I had mild exacerbations or other illnesses.
7. I learned that accepting help from my village isn’t a sign of weakness, but rather a gift to friends and family who might otherwise feel helpless to make a difference for me.
For instance, I received help when I was honest about my CF with the parents of my daughter’s friends. They sometimes offered to have my daughter over for a sleepover or take her to some activity if I was sick. They also included me in carpooling schedules for sports practices, summer camp, and birthday parties. These habits actually helped all the families involved, as most parents had other children to tend to, as well. In my case, though, I gained free time to administer treatments, catch up on household chores, and get much-needed rest.
Beyond these seven habits, I always kept my appointments with my CF care team and communicated with them as early as possible when I started to feel tired or was coughing more than normal. As my CF progressed, I used my accrued vacation times for tuneup inpatient stays or IV therapies at home.
I also always let my daughter see me doing my treatments, including my chest PT. It allowed her to see me prioritizing my health, so she learned the importance of self-care by my example. She’s also witnessed friendship and support systems that exist to this day.
What habits do you maintain to keep up with your treatment and health? Please describe them in the comments below.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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