Chapter 1 – Cystic Fibrosis Facts & My Diagnosis

“Playing the Cards Life has Dealt”

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • Obstructs the pancreas and stops natural enzymes from helping the      body break down and absorb food.

Symptoms of Cystic Fibrosis (source:  http://www.cff.org/AboutCF/)

People with CF can have a variety of symptoms, including:

  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite; and
  • frequent greasy, bulky stools or difficulty in bowel movements

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The Book begins!

A book has been in my heart for many years.  I have felt a need to reach out to CF patients who need to know that they are not alone in the fight and in life in general.  I believe parents of CFers could get something from what I have to share also.  Life is not always easy but when you throw in CF it makes it that much more difficult at times.  Just because we have CF doesn’t mean that we are exempt to life’s other problems like dating difficulties, divorce, abuse, family problems, addiction, etc.  With that said sometimes we can have a more difficult time in life because CF plays a part.

I am dedicating this to the memory of all of our fellow CFers who have lost their battle.  There are too many to name but I want to honor their lives too.  Breathe easy.

I am also dedicating this book to my beloved grandmother who means the world to me.  She passed away April 21, 2013.  She was the rock that was the center of our family.  She wanted to wait until I was done writing the book before reading it.  She never got the chance so now is the time for me to put this book into existence in honor of her.  She was one of my biggest cheerleaders.  She always said, “Shannon, you put up with a lot of crap when it comes to CF but you still keep going.”  I have been told that she said I was her “hero.”  I don’t know if I would go that far but that gives me even more reason to “never give up.”  I love and miss you grandma everyday.

Playing the Cards Life has Dealt is the title of the “book.”  I put “book” in quotes because I originally planned on putting my writings into book form.  I have now decided to put it in blog form so that I can get it out with little cost so that it is available and finally out of my head.