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    • #18120
      Jenny Livingston

      While scrolling through archived columns on the CF News Today homepage, I found this post by Janeil Whitworth: Identifying and Addressing 3 Barriers to Treatment Adherence

      In addition to the three adherence roadblocks listed in the article, I’d like to add one: simply being too busy. In all of my adult years, the only times I’ve really struggled with adherence to treatments was when I’ve had too much on my plate and there don’t seem to be enough hours in the day. When I was a new mom working full-time, or later in life when I was a single mom going to college, there were many days when I was so busy taking care of someone or something else that my healthcare took a back seat.

      I’m now able to spend my days at home for the most part and I have never been so consistently adherent to treatments. I can always find the time and motivation to do treatments, but I’m the first to admit that wasn’t always the case.

      Can you relate to any of the barriers to adherence discussed here? If you were to add to the list, what is something that makes it difficult for you to keep up on treatments (or perhaps did so in the past)?

    • #18122
      Paul met Debbie

      Ah yes, indeed, a very good article. And your being too busy is a great barrier.

      I didn’t experience this barrier until very recently because I always found the time first to do what was necessary for my treatment, and than do the rest. Which meant rising extra early to do nebulizing before going to work etcetera. In those days, I only skipped one session of nebulizing in 40 years, which was when being delayed on a flight back home from holiday and only arriving home at 5 a.m. in the morning. I just went to bed then and skipped the morning routine (not my pills though).

      But recently, since Kaftrio, nebulizing seems to be more of a habit than a necessity. And having so much more energy means that there are myriad ideas popping up in my head of things to write about. Since starting Kaftrio in August, I wrote 15 new Tales, the first 15 Tales took me 10 years. Just to indicate the vast difference. So, already twice in those 7 months, I found myself sitting at the laptop early morning, right after the first coffee and even before breakfast, to drum down my thoughts on the screen. And around noon, when the first draft was ready, I realized that I completely forgot my nebulizing. Which in a way is a nice experiment as well, for that way I found out that skipping it didn’t cause any problems during the day. Not that I am skipping it now for good, because forgetting once is perhaps different than stopping with it permanently. So, I am going to start my morning session in a few minutes right after finishing this comment.

      Debbie and I even had to find some new way of getting my attention away from the laptop when needed, for when immersed in writing I am totally unconscious of the rest of the world and Debbie asking me to do this or that (walk the dog, make food) didn’t come through at all. Which was a bit difficult and frustrating for her to watch happening. Now we found this other system, in which no questions are asked, but whenever she thinks time is there, she just walks to me, sitting behind the screen hypnotized, give me a little sweet shake and pulls me back into reality again. This works great, and I immediately click back into the world again and go walk the doggy, in a way feeling a bit liberated as well from the pull of the mind.

      Ah, there is Debbie calling, coffee is due. Wow, not even a shake was necessary. I am improving!

      Bye now.


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