‘The pamphlet said, ‘Life expectancy, 30 years. ‘That’s NOT me.’ My parents raised me to be FEARLESS.’: Cystic Fibrosis warrior shares journey, ‘I live on my own terms’

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“My story is about adversity, resilience and overcoming the odds. When I was 6 months old my parents noticed I was in a great deal of discomfort, and it became apparent that something was wrong. Right away doctors found my sweat was much saltier than normal, and after running a few more tests it was confirmed that I had Cystic Fibrosis. I can only imagine the fear, anxiety and pure stress my parents felt in this moment. At that time, 1992, there was not much known about cystic fibrosis compared to what we know now. The gene had not been discovered yet, and my parents were told I probably wouldn’t see my 20th birthday.

Courtesy of Stefan Strecko

Cystic fibrosis is a devastating, chronic, genetic disease that affects multiple organs in the body. It is caused by two gene defects in the cell, one of these defects is inherited from each parent. Once combined together, it causes defects in the CFTR protein. The result, abnormally thick mucus that slowly ‘drowns’ the body from the inside out. One area that this is most evident is in the lungs where this thick mucus causes frequent and serious lung infections. These infections cause scarring, inflammation, and progressively decrease the lung function to fatal levels. The reproductive system and the pancreas are also affected, where mucus blocks pancreatic enzymes resulting in digestive issues with absorbing nutrients and vitamins.

Courtesy of Stefan Strecko

Currently there is no cure, but there are an array of treatments available to combat the symptoms of cystic fibrosis. Caring for cystic fibrosis is like a full time job and is draining mentally. Daily, I inhale 4 aerosol treatments that treat my lungs and work to open my airways, thin mucus, and encourage clearing of the mucus Additionally, I take 30-40 pills per day that help absorb food, give me additional vitamins, and work to decrease inflammation in my lungs. I often think about how monotonous, repetitive, and seemingly endless this feels when in reality, I’m only ‘maintaining’ my health at best because of CF’s progressive nature.

Growing up with CF has both been very isolating, and ironically, very rewarding. Despite there being a very supportive community to connect with, CF’ers cannot have close contact with each other, due to the risk of cross infection with different types of bacteria, which makes it quite hard to relate and bond with in person. There was not one ‘ah ha’ moment per se when I became aware of my condition, but rather it was a lifestyle that was normal to me for as long as I can remember.

Courtesy of Stefan Strecko

My earliest memories of CF involve me explaining to my friends why I take pills every time I eat, or packing a bag with all of my equipment or medication. But the majority of memories revolve around my amazing childhood and teenage years, in which I was abnormally healthy and thriving, an ode to my parents. My parents raised me with a fearless approach, exposing me to every sport and adventure possible, all the while showing me the importance of maintaining my health through my treatments and lifestyle.

It’s funny to think of now because looking back, they were new parents learning this insane and intensive care for my chronic illness, but their attention to every detail and commitment to fighting this disease has given me the tools and motivation to do the same currently. I was always told I had a unique condition, but their ability to not put a ceiling on my expectations or aspirations has made me live with a ‘no excuse’ attitude. Playing sports from a young age has been perhaps, the biggest catalyst to my health and attitude living with cystic fibrosis. Besides the immense physical benefits they gave me, it was the sense of competition with myself and others that gave me an incredible sense of pride, normalcy, and control over my illness. This was important because at an age to understand what CF was, how it affected me and why I do all my treatments, sports were a great way to prove to myself that I ‘could do it’, despite being given a daunting medical diagnosis. I still remember people saying to me ‘you’re doing this with CF’, or ‘I can’t believe you have CF’. It was in these moments that I felt empowered to never hide my illness. This gave me the motivation and inspiration to prove how much someone with CF can do/accomplish.

Courtesy of Stefan Strecko

My positive mindset and attitude helped me in one personal experience that would typically be devastating for many kids my age. I was doing a class project on chronic illnesses, and of course, cystic fibrosis was one of the choices. I opened up this generic pamphlet, and there, smack in my face, is my life expectancy, 30 years of age. I remember my first reaction was, ‘That is not me’. Still to this day, I’m surprised that 10 year old me seemingly was unaffected by this, but that moment proved I was going to live on my own terms.

Courtesy of Stefan Strecko

My first major struggle with Cystic Fibrosis was when I started university. At this time, I was juggling the new experiences of school, sports, and social life, and began neglecting my health and self-care. My previous successful management with my disease and minimal complications throughout my adolescent years gave me a false sense of security, and an attitude that I was untouchable. Over the span of 3-4 months, I developed a serious case of pneumonia caused by dangerous bacterial infection, and my lung function rapidly declined from 90%, to below 50%. I was admitted to the hospital for 6 weeks, and underwent an aggressive course of IV antibiotics. Thankfully I recovered, but not without consequences. This experience, which was my first real scare with my illness and gave me a new found appreciation for my health.

Courtesy of Stefan Strecko

Cystic Fibrosis is a burden and a challenge like no other, but it is something that I’ve learned to manage successfully and use as a source of motivation and perspective. This was the complete opposite feeling I had when I faced another tremendous hurtle in my life; being diagnosed with testicular cancer at the age of 21. During this time, I again was in university, I had recovered and re-started my courses after my CF hospitalization the previous winter. I began to notice one of my testicles feel larger, and especially harder. Instantly, I panicked and jumped on Google (possibly the worst thing to do). This gave me a little bit of comfort as the information I had pointed out it could be several things, cancer being one of them. At this point, I did what I think a lot of concerned people do: rationalize to myself that there was no way it could be the worst case scenario, and avoided getting it checked. The ensuing weeks were absolutely brutal mentally, I was stressed, completely distracted, suffered nervous breakdowns, and was in a very dark place. It was one of the hardest things I’ve had to do, but I ended up going to a walk in to (hopefully) ease my mind. The look on the doctor’s face said it all, but she also explained my testicle felt very abnormal, and ordered an immediate ultrasound.

Courtesy of Stefan Strecko

I awaited the results the next day, again a nervous wreck, and was called in the walk in for the results shortly after lunch. I had tunnel vision the whole way there, it was an odd nervous but numb to my surroundings feeling. Hopeful but hardly composed, I was read the results and told I had a large mass that had essentially taken over my whole testicle. I was in complete shock, fear ran through my body as I thought of every scenario possible, the worst ones came to mind. ‘Had it spread, is it treatable, what will it do to my CF, will I die when I’m 21’. The sheer weight the word ‘cancer’ holds when it’s applied to you or someone you love is truly unexplainable. I had previously only thought of very sick people and cancer, not someone who is active, lives a healthy lifestyle, who is young. No one I knew (besides Lance Armstrong) had testicular cancer. Oddly, after the initial shock, my mind shifted to my rational and composed ways to deal with trauma/stress and I was completely focused on what was next, what I had to do etc. Now positive, and hopeful I would be OK, I saw more specialists, successfully had surgery to remove my testicle, and have been in remission for 6 years. This challenge was entirely different than dealing with cystic fibrosis because although a great burden, I felt like it was familiar to me.

Courtesy of Stefan Strecko

I often talk about how the challenges and adversity I have faced has shaped my perspective and given me motivation to push life’s limits no matter what stands in your way. As I reflect on my 28 years living with a chronic illness, I am amazed at the quality of life I’ve been able to achieve. CF and cancer are always a reminder to me to seize the day, stay positive, and never be too serious. I feel so fortunate to have made amazing memories that CF has not affected, through traveling, and experiences with sports. Some that come to mind are competing on a national level for freestyle skiing, where I’ve reached the podium 3 times, swimming with sharks in the Galapagos Islands, and completing my undergraduate degree while studying on exchange in Australia. It is extremely encouraging to see the progress made in the fight against cystic fibrosis. In my 28 years living with the disease, the median age has gone from younger than I am now, to over 50 years old currently. It’s incredibly hopeful to witness this, and new/ upcoming medications are a beacon of life for a bright future. It is my hope that with these advancements, and my determination \ I can inspire others to live a full life regardless of your illness.

Courtesy of Stefan Strecko

Coping mechanisms are key when living and managing a chronic illness, and one routine that I prioritize is working out and fitness. My previous hobbies and love for sports has transitioned into a passion for working out, competing in powerlifting, and also boxing. I find these outlets not only amazing to keep my lungs in great shape and my body strong, but also imperative for my mental health. Physical fitness is very therapeutic, empowering, and gives me a great sense of control of my health. On top of that, it’s incredibly inspiring to challenge yourself and push yourself to new limits!

Courtesy of Stefan Strecko

If I could give a few pieces of advice to those struggling with similar challenges or even different challenges my first would be, live by your own terms. We all have unique stories, conditions, and circumstances. With that in mind you should never compare yourself to those with, or without the same issues. You have the ability to write your own story, so set your own expectations and limits. Second, slow down. I find it is sometimes overwhelming to think about life in a grand sense, and instead try focusing on what you can do to enjoy each day at a time, take action, and win the small battles. It will seem a lot less daunting. Lastly, be good to yourself. Get that checkup you’ve been putting off, take up healthy habits and don’t neglect self-care no matter how tedious it might be. Taking care of yourself will allow you to be your best self!”

Courtesy of Stefan Strecko

This story was submitted to Love What Matters by Stefan Strecko. You can follow his journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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