Through the Patient's Eyes

My life with CF, through a patient's eyes, raw and real.

  • h

    39 Days
    On the Transplant List
  • n

    2 Trips
    To the Hospital This year
  • e

    72 Nights
    Spent in the Hospital this Year
  • d

    90 Days
    In RMH

My Progression and My Struggle

Cystic Fibrosis is a very progressive disease and it is also a very individualized and isolated disease. One CF patient can be 18 and be invert good health, maybe even reducing hospital stays to less than once a year, while another 18 year old patient from the same area can be close to death and in desperate need of a lung transplant.

I can recall a time where I could run around with my puppy and maybe cough once or twice. As much as it seems like that was forever ago in my mind, it really was only about two and a half years ago. I went from being almost fine, and having the occasional coughing fit to being someone with close to no lung function.

I don't get a regular amount of sleep because when I was around ten I was prescribed medicines that as a side effect can make you drowsy, and once I was taken off of those I almost didn't know how to fall asleep naturally. On top of that, when I finally can get myself to sleep, I wear a bi-pap mask on my face every night, am hooked up to a feeding tube all night and I wake up almost every hour due to coughing, or from machines beeping at me.

Daily Tasks and Their Difficulty for Me

  1. Gaining and Maintaining Weight: Very Hard
  2. Sleeping Thoroughly: Hard
  3. Catching My Breath: Hard
  4. Walking from Point to Point: Extremely Hard

Over time, I have noticed that walking from point a to point b has gotten more and more difficult. Thinking back, I can remember being able to walk around shopping centers with my friends, but now I can barely walk from my car to the front door. Every time I put my car in park I say to myself "And the journey begins" because each little destination, wether it be from my car to the front door, or from my front door to my room is like a grueling task.

  • Having death constantly at our heels is what keeps us living.- Claire Wineland