CFRD is the Cloud in My Trikafta Silver Lining

I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.

| 5 min read
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Meagan Helmick
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I've been blessed to have been on Trikafta™ now for six months. The positive impact on my life cannot be understated. This drug is life changing. My lung function has continued to increase, up almost 25 percent since I started taking it. Working with my care team, I have been able to stop six different medications. Before I started Trikafta, I struggled to make it four hours without an additional breathing treatment. I haven't had to do a breathing treatment in more than five months; I've just been using my daily inhalers. My energy level has been high; I'm walking six to eight miles a day now! I am able to sleep through the night without a coughing fit -- speaking of coughing, it doesn't happen every day! This has been amazing. 

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As I've mentioned in another blog post, I had struggled with the weight gain associated with Trikafta, but that has also leveled off and -- thanks to my compassionate and understanding CF care team -- I haven't been struggling with it as much as I was earlier.

One thing I had hoped when I started Trikafta was that it would allow for better control of my cystic fibrosis-related diabetes (CFRD). I was diagnosed with CFRD a little more than 15 years ago. My CF team caught it early and -- for years -- I was only on long-acting insulin every day. However, as the years went on, it became evident that I needed to also take insulin to cover meals and gain a tighter control of my blood glucose.

I'm going to be honest with you, CFRD -- in my opinion -- is the hardest part of CF.

Diabetes is so much work -- and no two days are the same. Because insulin is a hormone and it can be impacted by so many things -- such as stress, sleep, food, and exercise -- trying to control my CFRD has always been a struggle. I tend to be a perfectionist when it comes to managing my CF and this seems to be one thing beyond my grasp.

About four years ago, I started using a continuous glucose monitor (CGM), with the hope that if I could see how my glucose level was trending, I could correct it sooner. Although it has helped, it's still unpredictable. My endocrinologist has been helpful and encouraging and has told me that even if she followed me around every day, I likely wouldn't be able to achieve better control.

Cut to starting Trikafta. I am not sure if it is because I am absorbing macronutrients easier or because I am eating more food, but my glucose levels have had a mind of their own! I'm thankful for my CGM so I can see trends, but even the trends I am seeing don't always make sense. I know my glucose level is not uncontrollably high or else I would be losing weight -- and I gained weight since starting Trikafta.

I was hopeful that -- similar to my weight gain -- my blood sugars would level out after a few months and have a little more predictability. However, despite my best efforts, it still seems to follow no pattern.

Thankfully, with the advice of the diabetes educator at my clinic, my carb-to-insulin ratio was adjusted and I was given suggestions about how to dose my insulin when I exercise -- which I'm doing more of because of the benefits of Trikafta -- and when I take my Trikafta.

I'm thankful for all of the advice, but it's not as easy as I had hoped. I still feel like it's a guessing game. Will my glucose levels be controlled today? Will they bottom out while I sleep? Did I exercise too much today for the amount of insulin I took?

My care team has encouraged me to track my diet and exercise more closely -- and now that I'm not doing all the extra breathing treatments, I have time! Again, I'm so thankful for the benefits I have been given with Trikafta and I feel like -- as time goes on and I am able to better understand how it impacts my CFRD -- I will be able to manage it better. 

Staying up to date on the latest research around Trikafta and its impact on CFRD has been helpful for me during this process. If you didn't get a chance to attend live, I recommend watching the Research Overview: CFRD webinar recording, which gave me great perspective on all the new research being conducted to better understand CFRD and the role Trikafta may play. I was also really encouraged to see that the CF community is just as interested in better understanding CFRD from a recent Community Voice survey.

For the past six months, my health has been better than it ever has been. So, despite the struggle to manage my CFRD, I'm thankful that I'm not also trying to fight infections and declining lung function at the same time.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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.

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Topics
CFTR Modulators | CF Related Health Conditions
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Meagan lives in southwest Virginia. She has a doctorate in Health Promotion and Disease Prevention research and a master's degree in nutrition. She is also a certified health education specialist. Currently, she is serving her local health district as the COVID-19 epidemiologist and is an assistant professor at a regional state university. Meagan serves the CF community as a member of the Ear, Nose, and Throat Guidelines Committee and Teen Connections, and she actively participates in research trials at her CF care center. She is obsessed with her two mastiffs, Mya and Warren, and enjoys traveling with her husband, Ches.

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