Clinic Update

It was a good clinic visit today.  It’s always good when they say that you look the best they have seen you look in awhile.  I don’t know if I can attribute that to the Symdeko or just feeling decent.  I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking.  It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading

On a new journey…

A few months ago I shared about the new CF drug Symdeko (Symdeko post).  After much tossing around of the idea of taking the new drug I finally decided to give it a try.  I started the drug 3 days ago.  It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb.   Continue reading

Spring cleaning of sorts…

I went to see my CF doctor today on national doctor day…haha.  I was there for a sick visit not to wish him a happy day.  I have been coughing more, especially at night which sucks.  I wanted to be seen and get on something before it gets too bad especially with it being a holiday weekend.   Continue reading

Coughing hazards

Interesting title?  Let me explain.  I was at a friends house on Sunday evening sitting on a bar stool at her kitchen island chit chatting with her while she was cooking/baking.  Along comes a coughing fit.  A doosey one where I see stars and shake.  Well this one went a little farther and I blacked out for a second and fell out of the bar stool straight on my face.  Yes, you read that right.  Pictures below… Continue reading

New CF drug!

New CF Combo Therapy, Symdeko by Vertex, Approved by FDA for Certain Patients

Vertex Pharmaceuticals announced that the U.S. Food and Drug Administration (FDA) approved Symdeko (tezacaftor/ivacaftor and ivacaftor) as a therapy for cystic fibrosis (CF) patients carrying two copies of the F508del mutation in the CFTR gene (the gene defective in CF) or with one mutation that responds to tezacaftor/ivacaftor. Continue reading