Thursday, July 2, 2015

Big Day: Big Things Happening

July 2nd, What a Day:

First, I must tell everyone that it's my mom's birthday! That's right my amazing mother is celebrating her birthday today. As you may know... I'm very much attached to my mother, probably too much. Not gonna lie. I call or text her at least 5 times a day. Judge me all you want. But she ain't you're stereotypical mom. She never tells me what to do, she never judges, she is more of a best friend than a parent at this point. Granted I still call her for an awesome casserole dish recipe, or advice on something I'm doing for the first time, for the most part, she is just someone I like to chat with and share lots with. Plus, she has been helping me with  wedding & CF walk stuff. Here is a post I wrote about my mom on Mother's Day that explains EXACTLY how amazing she is right here!

SECONDLY, she got a pretty amazing Birthday present. Today is day that Vertex's Orkambi was FDA approval for patient use. What does this mean? What's Orkambi? Well, to read more details, I blogged about it in the past right here. Its a pretty big deal and I'm sooo excited about it.

This is why Clinical Trials & research is sooo important. I have a tab on the right had side on my blog- a "label cloud" & I've tagged all the trials I have done in last couple years there. I love doing trials, because it's super important. Without patients being the guinea pigs the research will never advance. Apparently, with my mutations, having only the psuedo bug, and being my weight, age, and  lung function... I'm pretty much ideal for most the trials. My lung function isn't too good or too bad, it's apparently "just right" lol. 50% whopping percent...

There are some negatives to doing the clinical trials, I have been on placebos before. For example one trial I did (for a psuedo antibody). I couldn't do my Cayston the entire 9 months. That's a long time to be without an important medication, especially if I'm ending up on placebos & not the trial drugs. It could of happened, who knows. BUT, even if my health declines a little, I can get it back. Usually you can't get back lung function, when there has been permanent damage, from prolonged infections & scarring. Otherwise, you fluctuate and can get it back. I know I'll never get above 65% (cuz of damage). But, I trust doc to oversee my doing the trials. Even with some negatives the positives outwiegh them all. Because when you see advances being made, such as Orkambi & Kaylcedo.

I'm not currently doing anymore trials for a little while. I just ended one little over a week ago. I decided to wait until after Andrew's & I 's wedding to do another one.  There is a lot of precision involved in them and I didn't want to worry about it on our mini-moon. We decided to take a mini-moon, since my health has been ehhhh wonky and we want to save more of our money for other items, like a down payment for a home, etc.

However, Doc already has two more trials for me to start when we get back :-)  Big week for trials this week! I'll be updating you all on wedding details & my current health soon. Check back for details!

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