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What it’s like to live with cystic fibrosis

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Kaleb chronicles life with cystic fibrosis

By Kaleb B., 18-year-old CHOC Children’s patient

I was born with cystic fibrosis (CF), an inherited life-threatening disorder that damages the lungs and digestive system. For years, I blamed myself for having CF. It made no sense to blame myself for something I was born with, but I couldn’t stop. I now understand that CF isn’t my fault.

What is cystic fibrosis?

CF is a disease caused by a missing protein in your genes. In a person with CF, the body produces mucus that is thicker and stickier than it should be. Everyone’s body makes mucus, and a person without CF can get rid of that mucus by coughing. But for someone with CF, the thick mucus is harder to expel, so the bacteria get trapped in the body, which leads to infections. This can also damage and scar the lung tissue. If left untreated, it could end up causing organ failure.

What does this mean for the rest of the body? The thicker mucus doesn’t move as easily, and it clogs passages in many of the body’s organs. Mucus buildup leads to complications ranging from mild or inconvenient to detrimental. The digestive system and lungs are the two systems CF hits the hardest. It can cause difficulty processing food, but the worst consequence of mucus buildup is the infections that can stem from it.

CF is a cyclical journey. I’ll be healthy for a while, but then I’ll catch something new, and my body will respond well to antibiotics. Then I’ll come down with something else, or the infection I’m fighting will become resistant to a medication that used to work. When I get really sick, I have to be admitted to the hospital for IV medication to try and get my health back on track.

Great strides have been made to cure the genetic mutation that causes CF, but for now, the infections caused by thickened mucus are dangerous and hard to treat.

There is no cure for CF. As little as two decades ago, most people with CF wouldn’t live to see their 18th birthday. Now, statistics show that nearly 40% of people living with CF in the U.S. are 18 years or older. More than half of people with CF will live into their thirties.

Learning to accept your cystic fibrosis diagnosis

There are limitations to what I can do daily because of my health and medicines that affect me. For example, my energy level isn’t consistent—some days I can make it through the day with ease, and other days I run out of steam fast. It’s frustrating, but I am trying to work with it and accept it.

It’s not my fault that my body works this way; I just have to work with what I have.

Despite having CF, there’s still a lot I can do— like writing articles such as this one, sharing my experience with CF.

Cystic fibrosis is a team sport

Over the last year, I’ve had more health challenges than ever, including unexpected infections and too many antibiotics to count. For a while, I was losing hope and felt overwhelmed, but I kept pushing on— and people around me helped keep me going. Their support was crucial to me being able to persevere, and now I’m on the other side.

Your disease doesn’t define you

What I’ve learned over the past year, through these health issues and my success despite them, is that disease doesn’t define me. It’s what you do despite disease that shows who you truly are. It’s how you fight through those battles that reveals your character.

It’s never easy to deal with a chronic illness. But now, I can separate my disease from my self-worth. My CF has never been tied to how valuable I am. Although it is an enormous part of my life and a strong force behind many of my frustrations and insecurities, CF is not who I am. My identity isn’t tied to my disease. I can’t change that I have it, nor the effects it has on me physically. I can only approach how I adapt to living with it.

Myths of living with cystic fibrosis

CF isn’t all medication and hospitalizations; there are some benefits to CF. For example, you usually get to eat a lot of high calorie and tasty food without worrying about gaining weight, which is nice! Enduring treatments usually isn’t too bad either, since you can play games or read while you do them, in order to multitask and make it more enjoyable. There’s a lot of ways to keep a good mood and stay thriving during the mundane parts of living with CF, so being creative with that can be helpful!

Questions I’ll hear a lot about CF usually relate to how “sick” I am or if I’m contagious. Rest assured I’m not contagious. I’ll catch illness a bit easier than others, but usually I’m not that sick, as long as I keep up with my meds. If the infections get bad enough, I’ll need a tune-up in the hospital with some stronger meds. But luckily, I’ve been taking pretty good care of myself lately!

To other teens with CF, I would say take every day and make the most of it. Live your life and enjoy it while you have breath in your lungs! Don’t let CF stop you from living.

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6 thoughts on “What it’s like to live with cystic fibrosis”

  1. Good job kid! You are a great writer. You have great perspective. You and your attitude are an inspiration to us all. Love you and who you are!

  2. This is a wonderful and well written article! I want to let him know that my cousin, had a daughter with CF, and she lived until age 36! That doesn’t seem long enough, but, oh did she make the most of those years! She was a very positive and beautiful soul and is missed by all that knew her!

  3. Awesome. My son Robby was so much like you. He enjoyed his life. He loved dirt bikes, 4-wheelers,mud trucks and horses. He did love every day of his life and never complained. We are having a Race of Faith October 12 in his memory to raise money for CF. I sure wish you could be here to speak to our runners. Robby was 44 when he passed away April 15, 2017. You look great. Keep up the good work my friend. God is Good. Will be praying for you and your family. Take care.

  4. Your article on your life with CF, was not only written extremly well, but was very informative. It not only gives others with CF, but everyone a wonderful outlook on life. We have a 10 year old grandson with CF. He too amazes us with his young decation to his daily treatments and medications. We pray for the doctors and researchers to continue to find new medications and a cure. Our daily prayers for you and all who have Cystic Fibrosis. Best wishes as you move forward in all your endeavors.

  5. Thank you so much for sharing your story Kaleb. You are an impressive writer. I love how clear and concise you are.

    Bless you and your family through this journey. I pray that a cure is discovered soon. ❤️🙏🏼

  6. Kaleb,

    Thank you for writing this article. It was very informative. When my daughter was a baby the doctors thought she might have CF. She did not, and she is a healthy adult now.

    I hope your healthy days far outnumber those where you are challenged. You are a fine writer and you never know, doctors may find ways to help you in the future. Stay positive.

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