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. 

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.