My life story with cf
Last updated: November 2021
I was diagnosed with CF, two copies of delta f508 at two weeks of age; after I had a meconium ileostomy, several bad feet of intestines removed, appendix removed, and colon reconstruction, then several of the surgery.
I was born with the umbilical cord around my neck, underdeveloped lungs, and still peeing through my belly button and a month early. I was a good weight, but after the surgery 3lbs. lost, I was only 4 lbs. Most of it was bad intestines. Back in '95 there were no prescreening for cf.
Thankful for my mom
My mom was blind sided with no idea I had cf. I don't know how my mom did it, alone to! She's pretty strong. My mom is my hero and best friend. She kept me alive most of my life and loved my so well. When I was born, the doctor asked her rather she wanted me to live or die. He told her he was "God," and, " had that power."
She was told by everyone I wouldn't live to be 18 and I'd never walk. Funny now I'm 26, walking and thriving. Trikafta gave me that much needed boost. It was a miracle that gave me a brighter prognosis. It has increased my lung function and improved my CFRD (Cf-related diabetes).
My journey with CF
When I was 14 I had only gone in the hospital for a couple surgeries that weren't really a big deal, no "tune ups." That year I was in and out of the hospital with severe lung infections and IV antibiotics. It was all so new and scary. Most with CF had been a champ at that point.
I was put on a lung transplant list. Nothing was working. Then on my third hospitalization, I think it was, I had a turn around. The meds started working. I started feeling ok. And PFTs increased. And I started going back to school. I was diagnosed with CFRD that year and asthma. But I turned out ok. I think I took it as a champ. I even got to go to Florida that summer.
I never gave up and here I am, 12 years later. I'm married and I moved across the country with the love of my life. I'm now training my poodle, Piper, to be my service dog. I have a lot of other health problems outside of cf and cf too that could use all paws on deck! I hope this wasn't to long and boring. But my life story is long. I hope you draw something positive from this!
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