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.  

I shared my decision to start the drug with my facebook and instagram friends and family a few days ago.  I share it with my blog readers today because I’ve had people asking if I can tell anything.  Let me first say, there has been no “magical moment” as of yet.  I am coughing more and have more of a loose cough, not necessarily coughing up more all the time.  There hasn’t been a major “purge” of mucus as others have spoken of. I have not had a headache either that others have said they have had as well.  No complaints here on that one.  Other things I have experienced are the gut issues, my gut is adjusting.  Part of CF is digestive/pancreatic issues.  I’ll just say that I’m more gassy and bowel movements are well….”different.”  My anxiety seems a little off kilter.

I will keep you all posted as I progress along this journey.  The goal of taking this drug is to keep my lung function where it is or even get a bump in percentage.  The bigger picture is to keep these lungs I have for as long as possible before needing new ones.  Here’s to hoping Symdeko helps me keep these lungs for as long as possible and that it’s a good journey.

Until next time…