My name is Mackenzie, and I was diagnosed with cystic fibrosis at birth. I am now 25 years old, and I had a double-lung transplant when I was 20. My older sister also has cystic fibrosis and from the time I turned 9, I knew my road with cystic fibrosis would look a lot different than hers. CF resonated primarily and pretty wickedly in my lungs, and living with a low lung function was all I knew. But despite the countless surgeries, doctor visits, and hospitalizations, I was known to have a positive outlook on life. I was determined to never let CF define who I am — it’s just one part of my story.
In 2018 my health was rapidly declining, and it was impossible for my CF to remain an invisible disease. I was put on oxygen 24/7, attended pulmonary rehab, and had a G-tube placed. I was at 19% lung function, 78 pounds, frail, pale as a ghost, gasping for air, and staring death in the face. I lived in denial of where my disease was headed and I lived my life through rose-colored glasses. So much so that in 2019, I attended the Great Strides walk at the Cleveland Metroparks Zoo. I remember waking up that morning. It felt extremely difficult to just get out of bed, but I was fighting hard. I made it to the walk and reality set in — I was not going to be able to walk like the rest of the attendees. No matter how reluctant I was to say I needed help, I did, and the staff at the zoo drove me through the walk route on a golf cart. I felt appreciative but also a sense of defeat. CF was finally winning. At the end of that same year, I made my first appointment with the Cleveland clinic for a double-lung transplant evaluation.
When I first met my new transplant doctor, the first thing he said to me was, “Do you know how sick you are?” It was at that moment I knew I was about to be forever changed and surrendering was my only option. After a couple months of transplant work up, I was placed on the lung transplant list. Within 12 days, I received the call that would change my life. On October 28, 2019, a selfless donor gave me their lungs, and there is not a day that goes by that I don’t appreciate the second chance I was given.
Before transplant, just walking from the couch to the bathroom was a chore. My doctors had told me I didn’t have more than six months left before my God-given lungs would no longer be able to provide life for me. Everything I was passionate about — whether it was singing, dancing, or making YouTube videos — was impossible. Every dream I had mapped out as a little girl was slipping away because I was living in the unknown.
This October, it will be five years since my transplant, and life has been blissful. I used to have to fall asleep and dream to experience the life that I live now. I will always feel like I’m dreaming and this new way of life will always be surreal. This past May, I decided to attend the Great Strides walk for the first time since that day in 2019. Something as simple as walking can be taken for granted because it is second nature, yet I was unable to do it five years ago. I celebrated walking this year with ease. I looked around, and it is moments like that when it hits me how drastically different my life is now. I am currently living with a 106% lung function and weigh 105 pounds; I’m creating the life I had always wished for. I sing, dance, and make YouTube videos again. I am currently in the workforce after not being able to work for eight years, and I am starting school very soon.
Let this story remind you that even in your darkest hours, the sun will find you again.
I remember the walk in 2019 was rainy, cold, and cloudy. The walk this year was sunny, and so much warmth surrounded me and my family. That symbolizes my life then versus now. I was stuck under a giant storm cloud; my lung donor made the sun come out again. If I could go back and tell myself something before transplant, it would be to embrace the changes that were happening to me. It took me a long time to accept that I needed oxygen, a feeding tube, pulmonary rehab, or to be placed on the lung transplant list. I now have a deep appreciation for those medical interventions that kept me strong enough to withstand a surgery of that magnitude. They are a massive reason why I am still on this earth. I have many more CF walks in my future, and I will go with my head held high and breathing easy. Breathing easy was a foreign concept to me for 20 years of my life, and now it’s the best yet most simple thing I do.
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