When living with cystic fibrosis, knowing your mutation is key, but it doesn’t have to be the sole focus of living your life. In fact, it absolutely should not be. If you’re lucky enough to have the right drugs to treat your mutation, you have to put the work in every day when you live with CF. As a 61 year old with CF and the recipient of a double lung transplant, I am living, breathing proof that managing CF is a marathon, not a sprint.
My CF journey has always been a challenge, but a welcome one. Much like training for a marathon, when you have CF there’s continual planning, work and discipline, coupled with twists, turns and opportunities to re-invent yourself. I was diagnosed with CF at a young age and at the time (the dark ages with CF); doctors were very much perplexed about the disease and how to treat it. My parents were told I wouldn’t live past my sixteenth birthday and they believed that the quality of my life was more important than the quantity of years. So, while we followed the medical protocol of that era, my parents wanted me to be a “kid” which meant rough-housing with my three older brothers and playing on their sports teams. It also meant adhering to my parent’s mantra of “you cannot fail.”
As I continued to defy the odds, I realized that there was no “quick fix” or “golden ticket” that would result in good health; high athletic achievements; or a 4.0 GPA. I followed daily goals to keep my “Body, Mind and Spirit” healthy. This included attention to nutrition and exercise as well as making smart choices in my work and social circles.
This isn’t to say every day is smooth sailing. In fact, most days are wrought with obstacles, but I won’t allow these to deter me; instead I view them as catalysts to live life to the fullest. And yes, there are times when staying medically compliant feels like a struggle. I am human and I can promise you that exhaustion and fears have visited me, as well as unwanted “episodes” like the one I had while on a business trip to Arizona when I was far away from my medical team. I was rushed to the hospital in the middle of the night vomiting blood, and before I knew it, I was stuck there for three weeks until I was healthy enough to fly. I didn’t freak out when this happened – I simply approached it as if I took a spill while running a marathon – a temporary setback. It’s during times like these that I look for the solutions and adjust accordingly with the mantra of, “I cannot fail” guiding me the whole way.
Oh and let’s also not forget about the importance of exercise when living with CF. It’s not always easy to get out there and get the blood flowing, but for me, being active and participating in sports have helped shaped me into the person I am today – competitive, disciplined and determined. Some people may view exercise as a luxury, but, when you have CF, exercise isn’t an option, it’s a necessity. I remember when I started running, I couldn’t even jog once around the track, but with dedication and training, I went on to competitive track in college and as an adult have even run marathons. If you have CF, you don’t need to compete, but you do need to go out there, open up your lungs and breathe! Compete with yourself to BREATHE…
Another mile in my marathon-like life is my focus on nutrition. Like many others with CF, pre and post-transplant, I struggle to keep weight on and it’s imperative to pay attention to the quality of food I put into my body. Although junk food is high in calories, it doesn’t give my muscles and mind what I need to go the distance. So, while splurges are natural, overall, I tend to eat foods that are healthy. I literally think about how everything I eat feeds my organs, especially my new lungs.
Well, what else is left in between the good nutrition, exercise, working and a social life? So much more, but most importantly having a strong support team with family, friends, and my doctors – it’s a TEAM approach! This team gives me the will to keep running & climbing up hill, reminding me that there will be another new adventure around the corner and I’ll continue to live in the forward of possibility, with the belief that I cannot fail
For those with CF, the sole purpose shouldn’t be to rely on a “golden ticket” for a new medication due to your mutation. Instead, keep living your life, be relentless and strive for the most awesome life you can live – the best is yet to come…
“Life is a fight round by round. I have the choice to fight or quit. I am responsible for the direction of my dreams. I will work hard and I will keep going no matter what. From this day forward I choose to fight.” – The Fighter’s Creed