In the summer of 2019, I was contemplating if I would be able to make it through the school year without a hospitalization. I really focused on my self-care routine of exercise, treatments, rest, and proper nutrition. I started doing some research and reading about running, which I had always been interested in as a form of exercise. Toward the end of summer, I attempted a run to see how I would do. I got to about a quarter of a mile before I had to stop to catch my breath, then proceeded to have a coughing attack. It quickly turned into a walk after that.
I had a routine CF appointment at the end of October at which my lung function was sitting at 65% and I had a significant amount of unintentional weight loss. At the end of November, I started Trikafta®, and I noticed a difference within a couple hours of taking my first dose.
I could take a deep breath without feeling like I had a cinder block on my chest.
Within a month I couldn't remember the last time I had coughed. A few days before the new year, I decided to test my running ability since I wasn't constantly coughing. I was able to run 1.5 miles continuously without getting winded or having a coughing attack. My legs were fatigued before my lungs. This run opened up a world of possibilities for me. I decided to create a running goal for myself to average 20 miles a month in 2020.
I tracked my running goal the same as I have tracked all my other self-care goals since grad school -- a monthly calendar with a color-coded system of dots to track my goals and treatments. If I was on a Cayston® month (i.e., inhaled medication three times a day for 28 days), I would add a pink dot after each completed treatment. If I read for at least 30 minutes, I would put a red dot on that day and add purple for a workout. I loved the visual and sense of accomplishment as the month filled up with a rainbow of color, and it helped me stay motivated and accountable to myself. I now track my miles each week along with other workouts and sports and total the miles at the end of the month.
My first follow-up appointment after starting Trikafta was early February 2020. I was actually excited for this appointment! My pulmonary function tests had jumped to 85%, which was a 20 percentage-point increase in a matter of a couple months. This gave me the confidence to continue pushing myself and sign up for some races. I signed up for a 5K in March, and I thought a local 7-mile race (BIX) at the end of July would be a good goal for six months into my running progression. BIX is a very hilly course, and the atmosphere is very lively and fun. I even entertained the idea that I would be ready for the local half marathon at the end of September. I had my plans all mapped out; then COVID hit. My March race was cancelled, and BIX was virtual. I was bummed out that my milestone race experiences were not able to happen as I had originally planned.
My 30th birthday rolled around and my parents -- knowing that I am a goal-oriented person -- asked me what I wanted to accomplish in my 30th year. My response was to run some races. I couldn't wait to get the real race experience. I found myself coming back to that question several times over the next couple days. I was getting frustrated that I had my progression planned out but wasn't able to experience races.
I let myself have a pity party for a day, then decided to take matters into my own hands. I decided to map-out my own half marathon and started training for it.
Twelve weeks later, I completed it along with a handful of friends. I felt blessed to have family and friends provide support stations along the way to make it feel like a real race. I was so proud of my accomplishment.
Within a few weeks after my half marathon, I started questioning, “What now?” My friend who has run several marathons told me that if I can run a half marathon, I can run a full. Even though the suggestion came as a surprise, I had given some thought about running a marathon someday. I quickly decided the time was right. I set my goal to run a full marathon in 2021. In the months following my half marathon, I finished out my 20-miles-a-month running goal and participated in some fun challenges to keep me motivated through the winter months. I also did a lot of reading and research on marathon training to prepare myself. I recently completed my long-awaited first official BIX race, joined a running group, and am currently in full marathon training mode for my marathon at the end of September.
Running has become an important part of my life. I am thankful for all the opportunities Trikafta has opened up for me, and this is only the beginning. I've found my happy pace.
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