31 Days of CF: Genesis’ Story

31 Days of CF: Genesis’ Story

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Day 23 of 31 Days of CF ⁣⠀ Topic: Late Diagnosis⁣⠀ ⁣⠀ This is @lxvandme experience: ⁣⠀ ⁣⠀ No one ever expects to get diagnosed with a terminal and chronic illness (that should’ve been diagnosed at birth) at 19 years old. I was born at 24 weeks gestation in 1998, way before new born screening became a thing. I was the picture of the grossest, booger eating toddler at your local pre-k. After my doctors kept saying it was asthma and allergies or related to my prematurity, my parents and I moved on and it became normal. My CF diagnosis wasn’t something that I pushed for. I knew what CF was only because, I learned about it in 9th grade biology. So, I never said “Oh, this could be me,” until I was being tested for it. Long story short, we confirmed CF with two sweat tests and genetic testing. Just like that the 8 words that defined my childhood: “severe persistent refractory asthma characterized by mucus hypersecretion” turned into two words: cystic fibrosis. ⁣⠀ ⁣⠀ My world shifted and it was strange and foreign, but yet it felt familiar. Because behind the sham of my asthma diagnosis, I’d been living with CF my whole life. I was already used to coughing up and drowning in mucus. I was used to going to the hospital for IV antibiotics, PICC lines and taking pills. I was used to the GI issues. I was used to manual CPT. I was used to PFTs. I was used to being sick. The thing I wasn’t used to, was saying “I have cystic fibrosis.”⁣⠀ ⁣⠀ It’s been an experience navigating and fitting CF into my life, and while a lot has changed; I haven’t and neither have my lungs (they still don’t do their job). At first it felt like the end of the world, and I was trapped in my own mind. Though ignorance is bliss, knowledge is power, and I’m better now because I know I have CF. If I didn’t know I had CF, would I be happier than I am now? No. Would I be sicker? Yes. The reason I can be happy with this disease is because I’m surrounded by people that make living with a crap body, less crappy. But if we’re being real, it’s a blessing I wasn’t diagnosed CF 20 years ago. The OG Vest by Hill-Rom actually looks like it’d give me nightmares.🤣

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