How My Decision to Pursue Enteral Tube Feeding as a Teen Improved My Life as an Adult

When I first got an enteral feeding tube as a teenager, I had no idea how many doors it would open for both my health and my involvement with the cystic fibrosis community. Fifteen years later, here's how I'm doing today.

| 5 min read
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Kyle Shiel
Kyle-Shiel-Tube-Feeding-rectangle

Some days I am grateful I had an umbrella or an extra stash of enzymes, and other days for having traveled abroad with my parents or having met my girlfriend, Emily.

Then, less apparently -- amid life and cystic fibrosis -- I am grateful for pursuing tube feeding to confront my low weight and pancreatic deficiency as a finale to my adolescence with CF. Sometimes, I wonder how my life would be different if I hadn't done that when I did, almost 15 years ago.

Kyle-in-PDF-Rectangle

 

Me, at the age of 15, featured in the Ann & Robert H. Lurie Children’s Hospital of Chicago CF Foundation pamphlet on understanding tube feeding.

At the age of 14, I was small, and I felt small. I stood 5'1" and weighed 100 pounds. My lungs had always been strong, but I continuously struggled with my weight and physical strength. Despite my love of food, constant eating, and support from my family, I was unable to see momentum in my growth charts or meet my growth expectations. It left me frustrated and scared, and I knew I was losing time. By the end of summer, I would be in high school -- and this late bloomer was in dire need of a serious comeback in time for the oncoming of puberty.

My CF dietitian and I were nutrition partners, and she understood my frustrations, suggesting we needed to meet my growth spurt in time with fat reserves. After seemingly exhausting all conventional practices, she suggested introducing tube feeding to my treatment regimen.

Immediately, I said, "No, I don't need a tube." I thought I could hit the calories hard and be fine. Over the next 60 days of some serious grocery trips and calorie binging, I had gained two pounds ...

And so, game-plan tube feeding was on. It was an inevitable decision, and no one would make it for me.

After years of tube feeding and putting on muscle from exercise, I left pediatrics for the adult clinic at 20 years old in 2009 weighing 170 pounds and standing 72 inches tall.

Now, fast forward to 2017.

From a CF perspective, my life seems to be going relatively smoothly. At 6'2" and weighing anywhere from 185 to 195 pounds, I have muscles in my arms, chest, legs, and shoulders. I enjoy running and lifting weights, and can feel the benefits of pushing myself to run a little harder, dig a little deeper, or do one more rep than the day before.

In 2015 and 2016, I served on the Cystic Fibrosis Foundation clinical care guidelines committee on enteral tube feeding to produce "Enteral tube feeding for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed guidelines" with the CF community.

Nutrition remains a critical part of my health and component of battling CF, but things have changed. Now, I eat for how the food will make me feel, the quality of the ingredients, and how it tastes. I remain a culinary enthusiast with a passion for cooking, which has become a wonderful creative space for me, in addition to the nutritional benefits it provides.

Interestingly, I no longer feel obligated to pack food down until I am uncomfortable or pick food for the calorie count, despite being tough enough to digest it as is, without pancreatic deficiency. I've learned to choose the foods that leave me feeling energized, and I now know my gut well enough to stop eating when I feel nurtured, as opposed to uncomfortably full.

Eating the right amount and burning through calories regularly seem to be working incredibly well for my weight, nutrition, and well-being. I've been able to find a balance between my daily habits and the needs of my body. Furthermore, the habits and practices that have allowed me to achieve this balance seem to compound on themselves and strengthen the system: good nutrition and a strong chest promotes strong lung function and is associated with the ability to fight infection, strong lung function allows more exercise tolerance, and more exercise promotes more lung fortitude; and on top of it all, I feel well and am motivated to keep the system in spin.

I know that there's no silver bullet when it comes to CF, and I expect rockier roads ahead. But, for the time being, I invest for my future, make good on my past, and enjoy today. Some things I look forward to are growing in my career, continuing to explore my passion for food, and continuing to expand my relationships.

From the wonderful support I have in health and mind, I feel gifted and challenged by the opportunity to enrich the lives of the people around me. And I will continue to work hard to pursue those goals, maintain the best version of my health, and be grateful for all the things life has in store for me.

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Topics
Adult Care | Teen Care | Nutrition
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Kyle grew up 50 miles north of Chicago, as the middle of three boys, enjoying competitive water skiing and all active sports, with a continuous passion for food and culinary creativity. Kyle attended DePaul University for finance and marketing, and, after studying in Chicago, began to work in sales. His career has taken him to Michigan, New Jersey, New York City, and now Boston, where he currently resides. Kyle enjoys traveling, helping others, and generally "enriched living." Kyle is on the Cystic Fibrosis Foundation Adult Advisory Council (AAC), and has been part of several tube feeding advocacy projects, including a 2016 guidelines panel to develop evidence-informed guidelines in the Journal of Cystic Fibrosis.

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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.