IVs it is

When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs.  Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs.  With my line of drugs that don’t work I’m limited.  Well I had to call them back because my cough and wheeze were still hanging around.  I asked only for a short burst of prednisone hoping it would help.  You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased.  I went for lung functions and they were down a little (FEV1 34%/.98L).  When compared to my last set of lung functions they are down 4%. Continue reading

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