Chapter 4 – School Years

“Playing the Cards Life has Dealt”

When school started it was fun for me but terrifying for my parents.  I was the normal kid running, playing, and joking around.  Every year my mom would have a conference with the teachers and the school nurse to inform them about CF and what to expect with me.  I would also get up in front of my class and talk about CF and during that time then the kids were able to ask me questions.  My hope was that they would ask all the silly questions then so that I would not be talked about later.

School was fun for me.  I liked to learn and be around all the other kids.  I was a social butterfly.  I was unable to do some of the things that other children were able to do like going outside and playing if it was cold.  I had to stay inside during recess if the temperature was below fifty-five degrees.  I know my mom was doing this to protect me from getting sick but it was no fun to be the only kid sitting inside during recess.  I did manage to go outside when the temperature was above fifty-five degrees but then I did not want to come inside.

I did have special academic testing at school due to the fact that I was absent a lot because of being sick.  The testing was to make sure I was learning on the correct level and also so that I could have tutors when I was out of school for a long period of time.  We also had to set up an IEP (Independent Education Plan) so that when I was sick and missed school I could still stay right in line with my class.

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Chapter 3 – Denial & Guilt

“Playing the Cards Life has Dealt” 

Denial is a common feeling when dealing with a genetic incurable disease.  The first people to deal with the denial and guilt are the parents when they get the news that their child has Cystic Fibrosis, a progressive incurable disease.  Most all parents leave the doctor’s office after receiving the diagnosis in a fog of “this can’t be real.”

Now a days most all parents/family members go to “Dr. Google” to find out what the World Wide Web has to say about CF and what it entails.  By “Dr. Google” I mean they go to google.com and enter Cystic Fibrosis and start reading everything that their little brain can retain, all the good and bad.  The bad being what sticks with them.  As time goes on the parents should educate themselves from reputable sites like www.cff.org.  Also speaking with other parents of CFers and people with CF will help them know they are not alone and they can do this.  Your CF clinic should be able to help you get in contact with others.

Some family members never get over the denial and/or guilt that their child/sibling/grandchild/niece/nephew/cousin/etc. has CF or whatever disease they are dealing with.  Thus the reason that CFers can feel like they are a burden on those in their life.

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Chapter 2 – A Day in the Life

“Playing the Cards Life has Dealt”

My day begins by doing a breathing treatment along with airway clearance.  I used the ThAIRapy Vest up until July of 2010.  I received the Respritech-Smart Incourage Vest in July of 2010.  They are both a device and system for clearing excess mucus from lung airways (bronchi and bronchioles).  It uses a compressor to inflate and deflate the vest rhythmically at timed intervals and thus imposes high frequency chest wall oscillations that are transferred to the lungs. These oscillations thin thixotropic airway mucus, facilitating its removal by coughing.

 (Source: http://en.wikipedia.org/wiki/ThAIRapy_Vest)

I use a nebulizer to inhale my aerosolized medications.  I do breathing treatments four times a day.  I like to call it “smoking my pipe” and doing the “shake shake.”  Breathing treatments take anywhere from fifteen to thirty minutes, possibly longer depending on what medicines I am inhaling.

Postural drainage and chest percussion (PD & P) also called postural drainage and clapping (PD & C) is another airway clearance technique.  We like to call clapping, “beating,” no not in a bad way but that is basically what is happening when doing PD & C.  There a few other ways to do airway clearance such as; the Flutter Valve, Accapella, Incentive Spirometer, percussor (“vibrator”), Intrapulmonary Percussive Ventilation (IPV), The Frequencer, breathing and coughing exercises.  The goal of airway clearance is to loosen up the secretions in the lungs and make them easier to cough out.

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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.