Tuesday, May 3, 2011

Day 2 and Day 3

So, I'm playing a little bit of catch up, but I just found this 31 Days of May the Cystic Fibrosis thing, so I thought I would go with it, because I think it is a great way to give me ideas for my blog and how to raise some awareness. Here we go...

My first year after I was diagnosed with CF was rather similar to the past year. As you will recall, I was 6 and was relatively healthy. I do remember having to start breathing treatments and having my parents beat on my back. (This was before I got my Vest that does the same type of thing.) For those of you who don't know, the beating on the back is a form of airway clearance. It is supposed to help shake and loosen the mucus that is deep down in the lungs. At first, I thought all of this was pretty cool; that is an attitude that faded away pretty quickly. The biggest issue that I had at that age was that I had to come inside while friends were playing to do my treatments. That became an even bigger issue as I got older and played with neighborhood friends all the time.

I also had to start taking digestive enzymes which I could not swallow. I would sit with them in my mouth until they melted, and I would cry because it was so frustrating. So, my parents would open them up and sprinkle the little beads inside onto my food. I still remember putting them in my applesauce.


This one is the big one for me and my family. We all know that medicine is expensive, but medications that I have to take knock most of the competition out of the water! I don't know how many pharmacists have given me terrified looks right before they told me the price of my prescription. I think for this one, I will just list some of my medications and what they cost. Let's keep in mind that our insurance also has a $10,000 deductible, so there is a lot that comes straight out of my parents' pocket.

Cayston (28 day supply) is close to $6000
Tobi (28 day supply)- $4300
Creon 24- $2000
Pulmozyme- $1800
Azithromyscin (Zithromax) - $67
Fluticasone Prop (Flonase)- $20
Advair -$290
Nexium - $180
Proair (Albuterol) - $40
Sodium Chloride .9%- $20
Sodium Chloride 10% - $35 (The 2 sodium chlorides are mixed to make hypertonic saline solution)

Those totals are all for just one filling of the prescription. And the total is............. $14,752

Cystic Fibrosis is a very expensive disease, and insurance hates me a lot! :)

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