Making a change

Hello Everyone, My last PFT in October wasn't where it needs to be, I went from 98 in august to 90 in October, shoooooot, so I decided I need to take matters in my own hands and find an exercise plan. I drove past this place in my neighborhood, they have zumba, jazz, dance, so I tried it out on Saturday and Sunday and loved it!! So my next PFT test is 11/18, I will fill you all in then, fingers crossed!!!! Here are some recent pictures!!

Fall!

Hello, Just a quick update, I had a doctor's appointment in September and my pfts went down 10 percent, o no!! So they have me on this inhaler regiment, due to the inflammation in my lungs, I am very spazzy, I can actually feel when my lungs twitch, not fun, but I have another appointment on Monday 10/14, so I will be sure to fill you in, hope my numbers will go up. Other than that, I celebrated my Boyfriend's birthday, he is my world. Went on an old steam train and river boat ride on the CT River! Here are some pics from that day~ very sunny!!

Got a new vest machine!

FINALLY, After my previous insurance denied a new vest, I finally got a new vest!! I had the old dinosaur machine!!!

Here is my new vest, it's purple!! school colors!!! High Point University, NC

Difference between old and new Old: The air puffed right at your chest - stopped every ten minutes, had to manually adjust frequencies New: The air puffs from the bottom and shakes you up to your shoulders, making the bottom mucous come up and out! - You can make programs with adjusted times and speeds, very helpful!! Love!

Not Qualified for Clinical Trial, Phase 3 :(

Hey All, Sadly I learned I am not qualified to be on the Trial for Ivacaftor, a pill that helps your Gene's blocked protein channels which stops the process of Sticky muscous that causes infection and chaos. They want patients that have PFTS, FEV! % at 40-90 %. I am 98-103.

BUTTT, atleast I'm not in a situation to fret. I have picked up gymnastics again, and it brings me back to life!!!

Update - TOBI PODHALER

Hello! Still working the kinks to this blog.. can't quite click to where I want to be. Anywhoo, I have started TOBI Podhaler this month. Outragious, I say it is like breathing in a teasepoon of flour. It's kinda tricky, but it is better than doing it on the nebulizer for 30 plus minutes.

Also, below is a picture of my brother!! I have CF, and he does not. You have a %25 change of getting Cystic Fibrosis, ONLY if both of your parents care the gene. Crazy right? Well, I am glad I was given this challenge in life, made me appreciate things to a different level.

Clinical Trial invite!

Hello Everyone, I am starting my blog pertaining to my chronic genetic disease, Cystic Fibrosis. I am 25 years old, living in New Haven, CT, working for Yale Health System. On my journey, I hope to inform people of how we live day to day, overcome obstacles, and live life to the fullest. I have been lucky to not have much hospital visits due to exercise, but I still suffer day to day with my own battles. Positive UPDATE - I will receive further information on a clinical trial I am participating in September, VERTEX, for Delta508. VX-809 is a cystic fibrosis transmembrane conductance regulator (CFTR) corrector in development for the treatment of cystic fibrosis. VX-809 is being studied in combination with ivacaftor for people with cystic fibrosis who have the F508del mutation. Vertex has worldwide rights to develop and commercialize VX-809. (Referance) http://www.vrtx.com/research-development/pipeline ...