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My CF Story

I am 34 years old and living with Cystic Fibrosis.  To me it is not a curse of death or something to feel sorry about.  It's life and I make the best out of it.  I was diagnosed when I was about a year old.  My parents were worried as I only weighed 14 pounds and was very weak.  After a series of tests, they found out it was CF.  My poor parents were told the life expectancy of CF patients was only 9 years.  So, they held their breath for the first 9 years of my life and then realized I wasn't going anywhere!


I participated in dance class, gymnastics, and even played the clarinet growing up.  My parents had no restrictions for me and insisted I do everything all the other kids my age did.  I tried to get out of gym class (I have no athletic ability AT ALL), but they refused to even ask the doctor for a note!  Because of them, I believe I am as healthy as I am today.


I went off to college at the University of South Carolina Aiken, joined the programming board and even became the President of my sorority \^^^/!!  That is where I met my wonderful husband!  We were married on July 15, 2006 and have built a great life together with our adorable English Bulldogs, Sarge, Stella and T-Bone.

Me and my hubby, William


T-Bone (left), Sarge (center) and Stella (right)


I would say I live a fairly normal life, however one classifies "normal".  I'm very fortunate that the severity of my CF symptoms are related to my pancreas.  I take 5 enzymes with my meals and 3 with snacks.  I take calcium daily for my osteopenia, CF Source Vitamins, along with azithromycin 3 days per week.  Pills fortunately don't phase me...I might be lost if I didn't have any to take.  

My lung functions are typically in the 80-90th percentile, which I am very proud of!  For breathing treatments, I use my inhaler (Albuterol) and started Cayston in 2010.  I also use my SmartVest for 30 minutes a day with my Hypertonic Saline (my goal is to get up to twice a day).  I also enjoy other methods of airway clearance like riding my bike, taking classes at the gym (spin, step, weight lifting, combat) and working out with a personal trainer (or solo).


My daily meds include:
Zenpep 20,000 Lipase Units
Calcium (1000 mg daily)
Complete Formulation Vitamins (2 daily)
Azithromycin (3 weekly)
Prilosec
Claritin
Hypertonic Saline 7%
Cayston
Albuterol Inhaler




Comments

  1. You have a beautiful family. What a blessing. Can you tell me where I can find out more about that vest? Blessings to you!

    ReplyDelete
  2. Thank you! You can visit their website: www.smartvest.com

    ReplyDelete

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I'm back!!!

Unfortunately, I've been MIA due to some family medical stuff.  We had quite a scare with my stepdad.  Thankfully, he is out of the hospital and recovering!  He will be staying with Will and I for a while so we can help nurse him back to health.


I never thought about losing a parent before.  As I grew up, I lost my grandparents and understood that I would have to worry about losing others as they too got older.  But, I never imagined being 30 and having to think about a parent leaving my life.  What a scary thought.  It definitely got me thinking.

Life is precious.  I can't sweat the small stuff.  I shouldn't worry about stupid things that really don't matter.  You never know how much time you have left in this world, so enjoy every moment that you can.  Have fun!  Let those that you love know that you love them.

I am not done with my parents.  I still need them ALL.  I don't think that will ever change though.

Pupdate

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We celebrated Sarge & Stella's birthday at home with some special treats from the local pet store.  T-Bone got to be at his favorite place on his birthday (our cabin in WV).  Unfortunately I was a bad dog mom and forgot his birthday hat and treat, but he got extra loving and sang to multiple times.

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