The Importance of Being Honest With Your CF Care Team

For months, I was too scared to tell anyone that my new inhaled antibiotic wasn't working for me. But after opening up about it with my CF care team, I learned that being honest is the most important thing I can do when it comes to maintaining my daily care.

| 4 min read
Jordan-Haley-Scott-Headshot
Jordan Robison
Jordan-Robison-Couch-Treatment-Honest-Conversations-Care-Team-Featured-Rectangle

I am a rule follower. Always have been, always will be. For as long as I can remember, I've been the teacher's pet and the girl everyone trusted to get things done. It's no surprise, then, that when it comes to my CF medications, I routinely follow my treatment regimen without skipping a beat. However, one medication came along that challenged this unwavering commitment.

Jordan-Robison-Couch-Treatment-Honest-Conversations-Care-Team-Featured-Rectangle

A couple of years ago, I started a new device for inhaled antibiotics. I was already on inhaled medications that took several minutes to complete each day, so I was excited to try something more portable -- especially since my care team and I decided that I would use it twice a day, every other month.

Every time I inhaled the antibiotics with the new device, however, I would cough incessantly. My husband would comment, jokingly telling me that it sounded like I was “dying.” I tried taking a sip of water between inhalations, but I could barely breathe in the medication before coughing. 

Perhaps even more importantly, however, I found that taking the antibiotic every other month actually made it more difficult for me to remember. You see, I rely on organization to make sure I take my medications daily.

Jordan-Robison-Pill-Organizer-Rectangle
My pill organizer keeps all of my oral medications together.

Each medication has its place. But, when you don't take a medication for a month, it doesn't really have a place in my routine. Therefore, the new inhaled antibiotic took a backseat to the rest of my treatment regimen. Eventually, I started to put off the medication for days, even weeks, at a time. Yet, I still went to my CF care clinic appointments without saying a word for quite some time.

It took me months before I was able to bring up the issue with my care team. I was so worried about “following the rules” that I would have rather dealt with the problem on my own, unsuccessfully, than risk getting in “trouble” with my doctor.

At my most recent appointment, however, I finally gathered up enough courage to bring it up. I waited with bated breath for my doctor to get upset with me.

But, to my surprise, he replied patiently and kindly, and asked me to always tell him when a medication or treatment isn't working for me. We spent the next few minutes together going over different solutions, and finally, we agreed on one that worked better for me. 

Afterward, I felt like a weight had been lifted off my shoulders! Not only was I honest, but now I wouldn't have to worry about being “noncompliant” or taking a medication that made me sound like I was “dying,” as my husband would say.

I have come to realize that the members of my care team are not just medical professionals here to help me with my CF care; they're actual human beings who understand the realities of living with CF, if you let them. I am so thankful for my caring team who understands that I have to incorporate many treatments into my day. I know that they are always on my side, and I will continue to be honest with them from now on.

Jordan-Robison-Mask-CF-Warrior-Mug-Rectangle
I am so grateful to be leaving my CF clinic with a treatment regimen that works best for me.

  Join the conversation on Facebook.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Care Team | Social Life and Relationships
Jordan-Haley-Scott-Headshot

Jordan is a graduate of Texas Tech University who now practices as a registered dietitian. She works part-time at a local hospital, teaches the health sciences program at a small high school, and owns her own private practice, Joyfully Eating. Jordan enjoys cooking, reading, writing, spending time with her family, and traveling. She is determined to keep finding new ways to successfully manage her disease so she can live a long life with her family. Jordan lives in Lubbock, Texas, with her husband, Jason, and their two dogs, Meredith and Leia. You can follow Jordan's blog here or find her on Facebook and Instagram.

Recent Community Posts
How I Navigated My Daughter’s CF Diagnosis
Blog | 5 min read
Navigating my Son’s First Year With CF
Blog | 7 min read
How I Balance My Career and Life With CF
Blog | 7 min read
You might also be interested in...