M
MCGrad2006
Guest
I know, I feel like a geek. Yes I am excited. I have been bouncing around since the news of Kalydeco came out. I want to hear it from my Dr, I want to know all about it! So excited, that at times it brings tears to my eyes. I know this is not a cure by any means and who knows what could happen in the future...but (as you all know and feel) it's HUGE. I am just thrilled! Thats all I wanted to say! Have a great day everyone, I will be sure to post if I get any new news!<img title="Cool" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-cool.gif" alt="Cool" border="0" />
UPDATE: CLINIC DID NOT GO AS PLANNED. I AM SLIGHTLY DISAPPOINTED. I AM NOT ELIGIBLE FOR THE NEW DRUG (WHICH I KNEW GOING IN) AND ALL THE STUFF MY DOCTOR HAD TO SAY ABOUT THAT WAS WONDERFUL! HE WAS THRILLED AND EXCITED AND YOU COULD JUST TELL HE WAS SO PROUD. SO THAT WAS GOOD NEWS. BUT PERSONALLY, MY APPOINTMENT DID NOT GO WELL, WHICH IS ODD BECAUSE I FEEL GREAT. I THOUGHT BECAUSE I HAVEN'T BEEN SICK AND I HAVE BEEN FEELING GREAT THAT THE CHECK UP WOULD BE GREAT TOO. MY PFT'S ARE DOWN ABOUT 5% FROM LAST TIME TO FEV1 79%. THAT WAS THE HIGHEST I COULD GET, THEY MORE HOVERED AROUND 75-77. THIS IS A HUGE DISAPPOINT. I HAVEN'T BEEN THIS LOW SINCE 2008, SO FOUR YEARS. I KNOW THAT I CAN BOUNCE BACK AND YOU CAN BET YOUR @$$ I WILL BE WORKING MINE FOR THE NEXT TWO MONTHS TO GET BACK INTO THE 80'S. SO I AM ON ZYVOX FOR ANOTHER WEEK AND THEN LEVAQUIN FOR TWO AND THEN CAYSTON. THEN I GO FOR A FOLLOW UP. I DON'T REALLY KNOW WHAT TO THINK, I AM TRYING HARD NOT TO BE UPSET AND BE CONFIDENT...PLEASE WISH ME LUCK. ALTHOUGH DR. DID SAY THAT MY LAST CULTURE SHOWED NO MRSA (yay!!!), BUT I AM PRETTY SURE ITS THERE, I FEEL IT IN MY SINUSES. I AM GOING TO BLOG SOON SO KEEP CHECKING BACK. MAYBE I NEED TO START BLOGGING AND MAKING MYSELF ACCOUNTABLE FOR THE EXERCISE....THAT MIGHT MOTIVATE ME IF I SHARE WHAT I AM DOING.
UPDATE: CLINIC DID NOT GO AS PLANNED. I AM SLIGHTLY DISAPPOINTED. I AM NOT ELIGIBLE FOR THE NEW DRUG (WHICH I KNEW GOING IN) AND ALL THE STUFF MY DOCTOR HAD TO SAY ABOUT THAT WAS WONDERFUL! HE WAS THRILLED AND EXCITED AND YOU COULD JUST TELL HE WAS SO PROUD. SO THAT WAS GOOD NEWS. BUT PERSONALLY, MY APPOINTMENT DID NOT GO WELL, WHICH IS ODD BECAUSE I FEEL GREAT. I THOUGHT BECAUSE I HAVEN'T BEEN SICK AND I HAVE BEEN FEELING GREAT THAT THE CHECK UP WOULD BE GREAT TOO. MY PFT'S ARE DOWN ABOUT 5% FROM LAST TIME TO FEV1 79%. THAT WAS THE HIGHEST I COULD GET, THEY MORE HOVERED AROUND 75-77. THIS IS A HUGE DISAPPOINT. I HAVEN'T BEEN THIS LOW SINCE 2008, SO FOUR YEARS. I KNOW THAT I CAN BOUNCE BACK AND YOU CAN BET YOUR @$$ I WILL BE WORKING MINE FOR THE NEXT TWO MONTHS TO GET BACK INTO THE 80'S. SO I AM ON ZYVOX FOR ANOTHER WEEK AND THEN LEVAQUIN FOR TWO AND THEN CAYSTON. THEN I GO FOR A FOLLOW UP. I DON'T REALLY KNOW WHAT TO THINK, I AM TRYING HARD NOT TO BE UPSET AND BE CONFIDENT...PLEASE WISH ME LUCK. ALTHOUGH DR. DID SAY THAT MY LAST CULTURE SHOWED NO MRSA (yay!!!), BUT I AM PRETTY SURE ITS THERE, I FEEL IT IN MY SINUSES. I AM GOING TO BLOG SOON SO KEEP CHECKING BACK. MAYBE I NEED TO START BLOGGING AND MAKING MYSELF ACCOUNTABLE FOR THE EXERCISE....THAT MIGHT MOTIVATE ME IF I SHARE WHAT I AM DOING.