My story being diagnosed with Cystic Fibrosis
Hello, my name is Leila, when I was 1 and nearly 2, I had a severe lung infection. After having several already, my lungs took a turn for the worse and I ended up in the PICU (Pediatric ICU), I was on life support, with full intubation and ventilation. After being in the PICU for a few days, I had a team of doctors/specialists, trying to figure out why I was having so many lung infections, then they suspected Cystic Fibrosis and I was diagnosed a few days after my 2nd birthday, which I spent in the PICU. I am 15 years old now and I do all my treatments, antibiotics, and go to my CF clinic to check my lung function.
I used to be a competitive swimmer and basketball player
I used to be a competitive swimmer and a basketball player. It was what made me, it made me keep fighting and it made me have something to live for, before my 9th-grade year started I went into septic shock and my heart stopped. I was in the PICU, and intubated, on life support, and had bags of different types of antibiotics hanging because they didn’t know why I was in septic shock. It turns out my PICC line had become infected and when it was flushed the bacteria went into my bloodstream. After I could breathe on my own, they took me off of life support and I was on a machine that pushed air into my lungs. I then transitioned to oxygen and moved to my normal room on the regular Pediatric floor. I had surgery for a port placement and a Jtube placement because my GI tract was shutdown after sepsis. I needed TPN so I had a port placed for my home antibiotics for Cystic Fibrosis, and a PICC placed for TPN. After recovery, I was released home, and then months later I got off my TPN, had my PICC line removed, and tolerated J-feedings. I started my 9th-grade year and could no longer be a swimmer or basketball player. It crushed me, but my faith, friends, and of course, family got me through it all.
In 2017 I had to have my gallbladder completely removed, while they were removing it, they damaged my Vagus nerve, which controls a lot of my functions. In my case, it was the function of my stomach that had been lost. After having that surgery and the damaging of my Vagus nerve, I had a GES and the diagnosis of Gastroparesis was given and confirmed. I had my Jtube placed months later after the PICU which was told in the paragraph before this one. I have a Jtube and after months of TPN, I now tolerate Jtube feedings, and I am having surgery for a G/J-tube in April or March of 2019 to be able to vent/drain my stomach of acid.