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

Quick clinic update

I had CF clinic today to follow up from when I was on IVs.  My lung functions were up a little to 30% / .87L FEV1.  We talked about this range being my new normal (baseline) for lung functions.  Thanks virus, thanks a lot.  I shared with him what was done at Barnes for my transplant appointment, some of which he already knew.  I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri.  They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. Continue reading

(Pre) Transplant Appointments

I arrived to St. Louis Sunday evening.  My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN.  I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal.  Luckily I have people to rotate, haha. Continue reading