Living with Cystic Fibrosis

Posted By on February 24, 2016

Bridgewater Feb


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