Frustrated boy sits cross legged with G tube, measuring tape, and scale behind him.

Cystic Fibrosis Problems Unrelated To The Lungs: Weight Gain

A common misunderstanding about cystic fibrosis is the fact that it strictly a “lung disease." In fact, it’s much more than that. For myself, growing up with cystic fibrosis was a constant battle of problems unrelated to my lungs. Of course, I had frequent lung infections and would need to be admitted to the hospital to be treated with antibiotics.

My issues with weight gain due to cystic fibrosis

What I struggled with the most was gastrointestinal (GI) symptoms. I always struggled with gaining weight due to my cystic fibrosis. When I was younger, my doctors tried inserting nasogastric (NG) tubes to help me gain weight but, unfortunately, that didn’t work.

Anyone who has ever had an NG tube inserted doesn’t need to be told how awful that process is, especially when you're between the ages of 4-6. So that didn’t last very long.

Gaining weight with a g-tube

When I was about 15 my pulmonary doctor decided that I would need a G-tube. This time around I finally caught some luck and ended up gaining over 35 pounds within the first couple of months. After about 2 years my pulmonary team decided to stop the feedings. The tube stayed in, but I tried to hold my weight on my own. By some miracle, I did!

After about a year of keeping the G-tube in without using it, my doctor decided it was time to remove it. Once that tube is out it’s out for good, so now it was up to me to make sure I kept up my weight. One of the problems I faced is when I had a CF exacerbation and needed IV antibiotics for several weeks. During those times my appetite wasn’t great.

Using exercise to help gain weight

It does not take much for a CF patient to lose weight. It is even worse during a lung infection. The calories alone from coughing an astronomical amount is enough to lose lots of weight.

Eventually, I decided to step into a boxing gym, and my entire life changed for the better. The training involved for boxing is extremely intense. Even though I was burning through calories in the gym, I was making up for it with how much I was eating because of how hungry it made me. I also put on a lot of muscle, which really helped when I had to be admitted to the hospital. The muscle was a little extra cushion to hold me until I was discharged and could get back into my routine.

Cystic fibrosis is more than a lung disease

When CF is referred to as a “lung disease,” I can’t help but explain how that is just not true. Of course, the lungs are affected and lots of us CF patients need lung transplants eventually, but that’s not all. Some patients have liver transplants or kidney transplants, too. I know people that have had all three.

Having cystic fibrosis is a full-time job that requires a lot of hard work in order to survive. (At least in my case it did.) I hope that with the new drugs available to patients, they won’t have to work and train so hard like I have just to be able to take somewhat of a normal breath. We should all have time to enjoy other things that life has to offer.

This is just my personal experience with one issue unrelated to my lungs, but I know everybody is different. Can you relate? Share your thoughts in the comments below!

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.