Saturday, March 22, 2014

This is the beginning part 2


Having big hopes is usually a good way to have huge disappointment. But I'm calm and optimistic. 

I truly have an amazing clinic and they are proving it every day. After months and months of repeating the same pattern of a round of ivs followed by a few weeks of normalcy I find myself back on ivs in less the 3 weeks after coming off of them. Clearly the ivs aren't working long term like they should but sadly nothing short of a transplant could fix that. 

My brilliant and amazing doctor has gone beyond what I expected and has started me on kayladco. Which if your aware is gene specific and sadly I do not qualify but after writing  to the pharmacy and doing some magic the little blue pill arrived. 

We're conducting our own study to see if this is possibly away to help make my quality of life better. So after a full day of testing I was given the okay to take the magic blue pill. Kayladco. We have no proof that this will work but I believe in my heart it will; it has to. 

This could be a new world for me. Everything I have read on this medicine is nothing short of amazing. I just hope that it works for me. So please keep me in your thoughts as go where no other cf patient has gone. (J/k I'm sure I'm not the first.) 
 Here are some photos from the testing. It was a lot of breathing for one day. 
 I will keep you up to date on any changes health wise but right now in just thankful for my insurance and my doctors and whole staff at UCSD

 Tonight is the perfect night for 
    Peace love and hello kitty

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