Living with Cystic Fibrosis
Living with Cystic Fibrosis can be challenging for newcomers to the disease but being born with it creates
an instant veteran. Throughout my lifetime I’ve gone through many transitions involving this disease and
within the norm of personal experiences.
I was diagnosed with cf at three weeks old at a time when its research was in its infancy. A long journey lay
ahead to learn an aspect of life not many experience nor want to; a life with many medications, routines,
and an already shortened time limit, but within develops a tireless ambition to be successful. First, my
parents had to learn how to insert a feeding tube down my throat which continued until the age of five. This
was a dangerous and nerve racking procedure mainly due to the fact that if the tube shifted it would
puncture my lung. Secondly, learning different methods of ingesting enzymes to digest food, otherwise I
would not gain any weight.
Fast forwarding to age sixteen I’ve lived a normal childhood involving many sports including, soccer,
hockey, tennis, and taekwondo. I’m now in the process gaining a wish from the wish foundation which is
such a great opportunity for many children with life threatening diseases. I ventured a new route when I
graciously accepted the wish and chose to have a shopping spree instead of pre-approved choices. This
avenue allowed me to bring my friends on this trip instead of just family.
I’m now nineteen, Cystic Fibrosis has been wearing on me for the past few years and continually gains
momentum towards its end game. I’m working full-time at the call centre while waiting for September to turn
the corner to begin a new chapter in my life; college. Living on my own is quite enjoyable but keeping up
with daily tasks, studying, and transportation is clearly becoming more and more difficult; having to run to
catch the bus with what only feels like small boulders on my back was nothing short of sheer exhaustion.
I’ve come to the realization that what I once thought would never come to pass has finally reached maturity,
I once felt my age and now I feel 3 times that. It’s an awful feeling to know that one’s disease is not visible
so people assume the coughing fit one is having is the result of my own self harm and not of heredity.
I’ve now been in university for five years, have still to finish my accounting degree all due to something that
is out of my hands; talk of transplant looms in the air. A double lung transplant is a procedure where they
remove my tainted lungs and replace them with healthy donor lungs. The surgery takes approx. 8-10 hours.
It’s three hours per lung and the rest is prep time. To sum up how it works basically they determine which
lung is doing most of the work and take that one last. They will deflate the lung running at a lower
percentage and push it towards the back. They cut three tubes and insert the new lung; they will repeat this
process with the other.
It’s now present day, I am currently on medical leave from my job and university. I plan to return to both
once this procedure is complete.
Living with Cystic Fibrosis can be challenging but it gave me the determination and ambition to want more
out of life than to allow something to dictate my dreams or my passions. I have lived past the life
expectancy that I was granted when I was born in 1989 along with many others my age whom broke the
norms and propelled the national average age for people with cf to above 18. Thanks to the generous
hearts of the people at the Kinsmen and their community, Cystic Fibrosis has a bleak future.
Kin Nicholas is a new member to the association with the Bridgewater Kinsmen