My family has been participating in the CF Great Strides Walk for over 30 years to support my sister, Kaylee (21) and I (34) who both have Cystic Fibrosis. When I was diagnosed with Cystic Fibrosis at 18 months, the average survival age was just 18. Now, just 30 years later, life expectancy has reached 50! This is all thanks to the fundraising efforts by the Cystic Fibrosis Foundation and by supporters like you. My family and I would like to thank you for all your continued support for the C&K over the past 30 years.
Let's make CF stand For "Cure Found"!
My CF Story
Growing up, I was very fortunate to have pretty stable lung function, but it was my sinuses that gave me trouble causing me to have 16 sinus surgeries. My sinuses improved over the years, but my lung function was steadily declining. Starting in middle school I would go into the hospital about 1 or 2 times a year for what us CFers like to call a “tune-up”. This would typically be a 2 week stay on IV antibiotics and lots of breathing treatments to get lung function back up to my baseline. As a person with CF gets older, it becomes harder to bounce back up to your baseline lung function after going down.
In 2015, just a year after marrying my highschool sweetheart, Nick, my health started to severely decline. It became hard to do daily tasks, such as take a shower or even walk to the car. One night I ended up being wheeled into the ER because I couldn’t breathe. This was followed by months of being in and out of the hospital for up to 21 days at a time. I was on constant oxygen and IV’s, received blood transfusions, lost over 20 pounds and barely had the energy to get out of bed. I was starting to come to terms that this may be my new normal. Unfortunately, I have seen too many of my CF friends go down this path way too young. Thanks to all of the support from my doctors, friends and family, and by some miracle, I started to recover. I started gaining weight, energy and lung function back.
Later that year I was fortunate to start the newest CF drug, Orkambi. This drug kept me out of the hospital for over a year and allowed me to avoid further decline in lung function. I was still doing my daily vest and nebulizer treatments along with around 30 pills a day, but was so thankful for my improvements. In 2017 I got a port placed to allow me to do my IV treatments without getting a picc line placed each time. This also allowed me more flexibility to do these treatments at home and minimize my hospital admissions. Thanks to my drastic health improvements with Orkambi, in 2019 I was blessed to have my first daughter, Raleyn. (Orkambi Baby!) Soon after Raelyn was born I started the newest CF drug, Trikafta. This drug was a life changer! Since starting Trikafta, I have had the highest lung function I have had since highschool, avoided hospital stays and have not needed to do IV treatments. I have even been able to cut out my daily vest and nebulizer treatments that I have been doing my entire life. 1 year after starting Trikafta I had my second baby girl, Aubriana. (Trikafta Baby!) Just this year I was able to get my port removed after having it in for 6 years due to no longer needing frequent IV meds!
Now we are a happy, healthy family of four and I could not be more grateful for all of it thanks to the miracle drug Trikafta.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.