Person scratches their head trying to figure out what jeans size to buy.

The Challenges And Perks To My Weight Gain

All my life I struggled to keep my weight in a healthy range. I was always underweight and the smallest in my class. I’d hook up to my feeding pump every single night, trying to in an extra 1000 calories while sleeping.

I had my stomach tube for 17 years and it helped me in many ways! I’m thankful for everything it did for me, but by the time I was 30 years old I was ready to say goodbye to it. After not using it for 6 months and proving to my doctor I could keep my weight stable, my doctor agreed it was okay. I wasn’t quite at my goal weight for age/height, but I was stable and was on top of my calorie intake. He made me promise to keep up my weight and that if ever needed, I’d be willing to put in a NG tube (down my nose). I had to do this for previous intestinal reasons anyway, so I had no objections.

Prioritizing my weight

Once my stomach tube was out, I had to focus extra hard. For example: I lose weight (really fast) when sick. I was always thinking of ways to add calories. I’d eat a high-calorie food, even if I wanted something different. Sometimes I wasn’t hungry, but I’d eat anyway.

Now that I’ve been on Trikafta for almost 6 months, I have seen a huge improvement in my weight! I’m now at my goal weight (129) and BMI (22). This new and sudden change has really impacted me in a couple of ways:

Positives of weight gain with cystic fibrosis

  1. Eating what I want, when I want. I don’t have to always choose higher-calorie foods. I no longer have to eat when I’m full or not hungry.
  2. No more worrying about future weight loss and worrying about how weight loss will affect the rest of my health.
  3. Food is more enjoyable (although I never disliked food). However, occasionally eating felt less fun and more like a chore. Now I can fully eat at my leisure with way less pressure.
  4. My energy has increased also, which has helped me be more active and enjoy more.

Struggles of weight gain with cystic fibrosis

  1. I need to really understand realistic body images and realistic weight numbers. Weight isn’t widely discussed in society and with so many compliments on my “small stature,” I needed to readjust my views and what I perceived "normal" was. I talk more about body image and insecurity with my CF body in “Tiny and Cute: How Cystic Fibrosis Affects my Body Image.” This has been the single biggest challenge for me. It’s been a pretty rough adjustment, none of my clothes fit, my body feels different, and it will take time to get used to it.
  2. I need to add more exercise. I want to add more muscle, so I can be at my best health. This will be really beneficial when I’m sick, hospitalized, or if I ever need a transplant. I have been doing this by joining walk challenges and adding some workout routines in when I sneak a bit of “kid-free time.” Sometimes my kiddo will dance with me, but not always.
  3. Another struggle (currently due to COVID-19 is finding out what size I am. Trying to figure this out from home and online shopping... well it’s been interesting, to say the least.

Adjusting to my new weight

It’s been an adjustment gaining 20+ pounds in little under three months. But, I’m so thankful to be 129 pounds! Finally, after struggling for years between 105 and 110, it’s amazing to see changes. There is such a difference in my energy, overall health, and even my lung function (up 10%).

I still have some adjustments to make in my lifestyle: food, exercise, clothing, and more. In time I will adjust, and for now, I’m just very thankful for new medication like Trikafta. It feels amazing to be healthy and stable, and I'm enjoying my newfound energy.

Have you struggled to gain weight due to cystic fibrosis? If you're on Trikafta, has it made a difference? Share your thoughts in the comments below!

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