Tuesday, May 6, 2014

Cystic Fibrosis Awareness Month

Hi everyone! I'm swinging by today to make sure you are all aware of CF.  If you follow my blog  it's safe to say you're probably already aware, right? Haha, I kind of hate these "awareness" activities for the millions of different ailments out there.  Yes, I'm aware of breast cancer. Yes, I'm aware of domestic violence.  yawn. Yes, I'm aware of autism.  Yes, I'm aware of Cystic Fibrosis.  What they should really be called is "Give Money to My Cause" month, because that's the point of raising awareness in the first place.  So let me rephrase myself and ask you to give money to my Cystic Fibrosis cause as a priority over becoming aware.  Pretty please.

Why should you part with your hard earned money?  Well you certainly don't have to- but I will give you a little breakdown of CF anyways, that way you can say that your awareness was raised but, hey, you'd still rather have your chai latte instead of donating money (What's that? You don't like chai? What's wrong with you?).

CF sucks.  It's pretty shitty.  CF is caused by a faulty NaCl transporter (depending on your mutation) that creates excess thick and sticky mucus when it doesn't work properly.  Think like peanut butter level stickiness.  This mucus clogs up the airways making it difficult to breathe and also makes a wonderful breeding ground for bacteria.  It also clogs up your digestive system so your body can't digest food.  CF is systemic so it affects literally every organ in your body, even though the lungs are what takes most of the credit.  But nothing works properly- your kidney, stomach, pancreas, lungs, sinus cavities and reproductive system are all screwed up thanks to all this mucus.  CF patients used to pass away by elementary school 60 years ago.  Now the projected median life expectancy for a person born today is 37 (please note that's a median, not the average).  What's the difference? Science, my friends!  The CF community and the CF Foundation both have paid for lots of research into CF and many wonderful medications have come from it.  No, it's not cured- but it's a lot more manageable.  Still, life isn't easy with CF- it's filled with medications, breathing treatments, hacking, coughing up blood, sinus surgery, stomach aches, feeding tubes, severe reflux, malnutrition, oral/inhaled/and IV antibiotics to fight lung infections, lung transplants (and liver, pancreas, and kidney transplants as well), sterility, pancreatitis, and other equally miserable things.  However the people with CF are pretty amazing- they take it in stride and are some of the most positive people I've ever seen.  So that's CF.  Without donations, CF patients wouldn't be alive today- alive to have jobs, families, and happiness.  So the donations go to a great cause for a great group of people that have to struggle with more than I could deal with for a day. 

We're incredibly lucky because Charlie's CF hasn't manifested in a serious way yet.  CF is progressive, which means it gets worse over time, so this might change as he gets older- but we are off to a great start.  I made a list of the medications, specialists, and procedures done to my 3.5 year old child since birth, due only to Cystic Fibrosis.  This is to give you some perspective on what a "healthy" CF child goes through, so just imagine how much more difficult it is for the ones who are more sick (and unfortunately there are plenty).  If you feel compelled to donate because you're a pretty badass individual you can donate HERE
3 1/2 Years of Cystic Fibrosis- Summarized

Digestive Medications
Creon 6000, Creon 12000, Pepcid, Prilosec, Prevacid, Nexium, Erythromycin, Periactin, Pediasure 1.5, Vitamin ADEK, Vitamin D, Miralax, Milk of Magnesia

Bactrim, Augmentin, Tobramycin (IV and Inhaled), Cefeprime (IV), Azithromycin

Lung Medications
Pulmicort, Pulmozyme, Albuterol

Specialists (that we see on a regular basis)
Social Workers
Respiratory therapists
Gastrointestinal doctor
Feeding Team

Sweat test
Barium X ray
3 day peripheral IV
PICC line placement (and removal after 3 weeks)
CT Scan
3 Chest X Rays
Allergy and Vitamin screens
Annual blood draws

1 ER visit
1 hospital admission
Countless CF clinic check ups
851 hours spent doing chest physiotherapy in 3.5 years (minimum, this doesn’t include sickness when it doubles from 2 to 4 treatments per day)
3-7 nebulizers per day (it’s too hard to calculate all of them in the past 3.5 years because the schedule rotates)

So there you have it.  You are now aware and you may now donate HERE instead of buying your delicious chai latte tomorrow morning.  Thanks my friends!

(SN: Photos taken by my talented husband, Robb Cyr, when Charlie was on IV antibiotics a few weeks back)

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