Relearning Treatment Compliance After Trikafta
In my teenage years, I struggled heavily with CF treatment compliance. I had a very laid-back approach to my health that bordered on apathy. I would forget to do treatments, forget to wash my nebulizers, or forget to pack them on when I went on a trip or overnight to a friend’s house.
Once I started college, I tried to hide my need for medication or breathing treatments from as many people as I could. I stashed my physiotherapy vest under my captain bed in my dorm room and bought my own electric sterilization appliance so that I wasn’t seen walking to and from the microwave with my bowl of nebulizer cups.
Developing CF treatment compliance in adulthood
As I settled into adulthood, I became much more compliant with daily CF treatments. I created time and space in my day for my health that quickly formed into a habit. Exercising, eating healthy food in quantities that allowed me to gain and maintain my weight, doing breathing treatments, and not forgetting any medication doses. I thought I “fixed” my compliance issues, and assumed I would never struggle with it again.
After I became a mother, I experienced consistent exacerbations and dealt with an enormous amount of guilt over the years that I placed my breathing treatments and health on the back burner. I remember telling my husband, “The present me is so angry with the teenage me.” I wondered if the damage that I allowed to be done in those years of non-compliance would take me away from my family sooner.
I became rigid with my treatments. I opted out of overnight trips or late evenings because my breathing treatments came first. I even requested that I bump up my breathing treatments from 2 times a day to 3, and then 4 a day. I was determined to control my health, even though that isn’t quite possible with CF.
Trikafta disrupted my routine
Then came Trikafta. Within weeks of starting Trikafta, my constant cough disappeared and I found it easier and easier to breathe. I started running! I cut back on my enzyme dose and cut my daily calories needed because my body was retaining nutrients like never before. I have never in my entire life been healthier. Yet, now I’m struggling with remembering to do breathing treatments.
I used to wake up in the morning and feel tightness in my chest. I would immediately nebulize a dose of albuterol to help alleviate the feeling. Then, I would grab some water to hydrate and sit down for the rest of my morning breathing treatment routine. Now, I wake up and feel exactly as I do all day. Perfectly fine. There’s no tightness in my chest, shortness of breath, or nagging cough. This new life I have from Trikafta has taken away my “natural reminder” to do daily treatments.
Needing to develop CF treatment compliance again
Though I resented myself for struggling to put in the hours of breathing treatments that my body has always required, I am now struggling with making the same mistake. It’s been nearly a quarter of a century since my CF diagnosis, and still, I’m learning treatment compliance.
Have you noticed a change in treatment compliance? How many hours a day do you spend doing breathing treatments? What are some of your tips for reminding yourself to do what is necessary (e.g., doing treatments, washing nebulizer cups, ordering supplies, etc.) for compliance with breathing treatments?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?