Losing weight usually is not something a cystic fibrosis patient should be concerned with because we burn more calories than the average person just breathing and fighting infections. It used to be something we were scared to do because if not done right, we are more susceptible to muscle and bone loss because CF sufferers often have digestive disorders, and don’t break down or absorb nutrients properly. Diabetic CF patients, in particular, need close medical supervision if trying to lose weight.
Trikafta has changed all that. Now that I am taking Trikafta, paying attention to my weight gain takes on a whole new meaning.
I started Trikafta on Sunday, November 24, 2019, and within one week noticed a big difference but not necessarily the one I was hoping to feel. I was heavier—a lot heavier! I gained about eight pounds in the first week. Doing the math, if this kept up I’d weigh over 600 pounds by 2021. My daily calorie allotment needed adjusting.
Growing up with CF, I was told to eat as much as possible and just to take my enzymes with meals and everything would work itself out. Over the last few years, I’ve worked out so that most of the weight I’ve gained has been muscle mass, and it is important for CF patients to maintain a healthy muscle/fat ratio. I’m 5’9” and weighed about 175 pounds when I started Trikafta.
I wouldn’t say I’m thin, but I’ve rarely been overweight. With my workout routine and overall healthy lifestyle, it has never been an issue. Some individuals with CF struggle greatly to keep on weight but this has not been a major issue for me.
My weight on Trikafta
Since starting Trikafta, I have gotten up as high as 186 pounds and as I mentioned eight of those pounds came on in the first week!
Taking Trikafta has meant making changes to the once “eat as much as possible” approach I took with my daily diet. Now, I take into consideration how much and what types of foods I am consuming. Sadly, I had to remove some of the foods that are weight-gain specific culprits, namely M&M’s and gummy bears. Rats!
Next, I went from running 13 miles a week to 20. Soon, I went from eating five meals a day to eating three to four, and from eating an entire bag of rice along with turkey slices for lunch to occasionally eating instant oatmeal.
Trikafta requires eating a lot of fat, so I’ve added yogurt to my Zone bars in the morning. Now, instead of having a workout shake at night, I often have another yogurt and maybe some grapes. I still drink a hot chocolate here or there or even enjoy a peppermint patty or two, but I am making an effort to watch my calories. Since Trikafta makes breathing easier less calories are burned for breathing as compared to before taking it. It will get easier to adjust my diet as time goes on but is something for those taking it to understand. More calories in, fewer calories out leads to weight gain—something to be mindful of while taking this drug.
I’m not complaining. Trikafta has done a lot of great things for me, but like any new drug it has it’s side effects.
Let’s just hope one is not me becoming the next contestant on “The Biggest Loser”!
Live your dreams and love your life.
Andy