DAILY LIVING & MOBILITY

Fighting Cystic Firbosis, and a Paralyzed stomach

Other

Leila Santana

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.

Gastroparesis

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.

Tags: , , ,

EMPOWER OTHERS!

Share this story to help change someone's life

WELCOME TO YOOCAN

THE GLOBAL COLLABORATIVE COMMUNITY FOR SHARING EXPERIENCES AND KNOWLEDGE BY AND FOR PEOPLE WITH DISABILITIES, SO NO ONE FEELS ALONE.

BY CREATING AN ACCOUNT YOU AGREE TO THE TERMS OF SERVICE ANDPRIVACY POLICY.