Tuesday, March 25, 2014

Just an update

The last few days have been sucky, some tummy issues are something I'm not use to and I hope it stays that way. 

I haven't noticed any changes and honestly I'm worried I might be inspecting and analyzing  every cough and ache and pain to much. 

There are times when Matt and I will be talking and we realize this could be the new beginning for us. So many opportunities can really happen if things start to work the way we hope they will. Maybe traveling and starting different projects and finishing things in the right time instead of waiting till I feel good. The things that could be possible for me is overwhelming but like I said high hopes comes high disappointment. 

So as always it's one day at a time enjoying what I can,when I can. I hope you all are well and good things are happening for you. 

 Peace love and hello kitty

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

Thursday, March 20, 2014

The beginning

Today is the new start of a new life. I did some testing today and I officially start kayladco. I'm beyond excited but worried too. I don't have the proper gene for this therapy but we have hit a wall that we are running out of options. Ivs are not helping long term. It's frustrating but I have complete trust in my team. It was a long day of a few testing but I'm wiped out and i will blog more soon. 
 

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