“People are resilient… I am so humbled by stories of other people with CF. Each story is unique, and each story offers something else special.”
“It’s weird that I’m on the hot seat right now, I’m used to being the one asking the questions,” Kristy confesses when PTI asked her to share her cystic fibrosis story. As a journalist for both the Odyssey and a New York local news station ‘News 12’, Kristy is accustomed to sharing stories about how the world and the people around her amaze her. She’s always had an interest in writing, but the ignition to her passion for journalism stemmed from the inspiration she draws from OTHER peoples’ stories of fighting CF.
The selflessness with which she treats other people with cystic fibrosis can be compared to the same care her mother provided towards Kristy’s cystic fibrosis. Kristy described CF as a detached part of her childhood and adolescence, because her symptoms never manifested in a way that made her think of her CF as life-threatening. She basically viewed her CF as a once a year occurrence of missing school, of rib-cage shattering coughs, of sitting on the bathroom floor for hours, with the shower running hot water and generating steam to clear the mucus, and with her mom kneeling silently by her side administering medication.
However, once that week was over, CF essentially slipped from Kristy’s mind. It did not slip her mom’s mind. Whenever her daughter needed IV antibiotics administered, her mother would quietly switch the device administering antibiotics to Kristy through an IV drip while Kristy was sleeping, as not to disturb her. “My mother never really discussed CF with me; she just dealt with it; she never cried in front of me. I could never imagine going through that as a parent,” Kristy tells PTI as she wipes tears from her eyes. Even with episodes of hemoptysis (coughing up blood) and surgical procedures for her PICC line, she decidedly pushed CF out of her mind in everyday life. “People are resilient,” she said as she shrugged her shoulders. She said that CF only truly entered her consciousness when she signed up for a Facebook account at age 16.
It was then that her life completely changed. She started making friends with other people in the cystic fibrosis community through social media and learned about aspects of CF, such as posture deformation from strained breathing and life expectancy. Kristy became incredibly engaged on the Facebook CF community. She even created her own Facebook page called “Kalydeco Miracles”, which is one of the most popular groups to date specifically on the topic of Kalydeco treatment. On this forum Kristy brought to life, thousands of people with CF share their experiences how the medication helped them.
Kristy is forever grateful for the power of social media to spread awareness of cystic fibrosis and share experiences in dealing with the disease. From her Facebook page, she discovered an incredible story of a woman who was taken off the lung transplant list because of the success of medication. From discovering other people with CF, Kristy has interviewed and written feature articles on a variety of people: from an athlete with CF completing a “24-hour fitness challenge” to raise money and awareness for CF to a father paddling across the country for his daughter with CF. When she was interviewing Travis Suit, the afore-mentioned father, she told us: “I was on a phone call with him, and when he told me he paddled hundreds of miles for his daughter with CF, I started crying and had to mute my microphone”.
True to her selfless nature, she is hesitant to share her feelings towards her own experience with CF with her interviewees. Her own struggles with CF are channeled through her pen, to dutifully share the narratives of other people with CF. We are grateful to get the opportunity to share her story, and shed some light on the unsung hero of the CF community.