My CF Story

I am 41 years old and living with Cystic Fibrosis.  To me it is not a curse of death or something to feel sorry about.  It's life and I make the best out of it.  I was diagnosed when I was about a year old.  My parents were worried as I only weighed 14 pounds and was very weak.  After a series of tests, they found out it was CF.  My poor parents were told the life expectancy of CF patients was only 9 years.  So, they held their breath for the first 9 years of my life and then realized I wasn't going anywhere!

I participated in dance class, gymnastics, and even played the clarinet growing up.  My parents had no restrictions for me and insisted I do everything all the other kids my age did.  I tried to get out of gym class (I have no athletic ability AT ALL), but they refused to even ask the doctor for a note!  Because of them, I believe I am as healthy as I am today.

I went off to college at the University of South Carolina Aiken, joined the programming board and even became the President of my sorority 👑!!  That is where I met my wonderful husband!  We were married on July 15, 2006 and have built a great life together with our adorable English Bulldogs.

T-Bone (left), Sarge (center) & Stella (right)

My lung functions are typically in the 80-90th percentile, which I am very proud of!  For breathing treatments, I use my inhaler (Albuterol) and started Cayston in 2010.  I also use my Vest for 30 minutes a day with my Hypertonic Saline (my goal is to get up to twice a day).  I also enjoy other methods of airway clearance like riding my bike, taking classes at the gym (spin, step, weight lifting, combat) and working out with a personal trainer (or solo). My daily meds include:

Trikafta

Zenpep 20,000 Lipase Units
Calcium with Vitamin D (1000 mg daily)

ADEK Chewable Vitamins (3 daily)

Azithromycin (3 weekly)

Prilosec

Claritin

Hypertonic Saline 7%

Cayston (on/off 28 day cycle) 

Tobi Podhaler (on/off 28 day cycle) - not currently using

Albuterol Inhaler
AffloVest

I would say I live a fairly normal life, however one classifies "normal".  Pills fortunately don't phase me...I might be lost if I didn't have any to take.  

I'm happy to report that I was approved and began taking Trikafta on December 30th, 2019!!