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CF Updates

Greetings friends!

I had the pleasure of going to my quarterly CF appointment on Tuesday.  It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit.  (the original funk started here)

I finished my round of Cipro on 10/29.  And still had a head full of congestion, sore throat and ears. Bummer.  I thought I was starting to feel better for a split second, but it didn't last.  Thankfully, my lungs were still feeling good :)  We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.

So, I headed in to the doc on Tuesday.  My PFTs are holding stable so that makes me happy!  More on that in a minute.  During my exam, she could see there was still fluid in my ears along with my red throat.  Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.

So, the plan of attack is this:

1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin daily  (I had started missing here and there)
3) Get nasal spray! (WTF?! I panicked at the the ENT now I'm supposed to do this on my own!?)
4) Get back on track with my vitamins and Calcium (yes, been slacking here too)
5) DO MY VEST EVERY DAY (recommended 4 times daily...I chuckled).

Why am I slacking on something as simple as taking a vitamin?  Well, there is no excuse other than laziness.  I typically have a pill container that holds a week supply...but with adding the Prilosec, they don't all fit, so I stopped filling it up.  And therefore, I forget to take them.  Sigh :(

And for the vest...I simply haven't been in the mood.  I know, I know.  But when I'm not feeling 100%  I just want to lay on the couch and vegetate.  I don't want to be shaken!  But, I WILL be better!  So far, so good for the week (for once a day, anyway) :)

We have our plan of attack and I will be a good little CFer.  I swear I started feeling better on Wednesday morning already!  I even have done nasal spray twice a day! Who am I? haha I bought 2 types, the 1st was a gel (which I didn't realize til I got home).  Eeek, that was horrible, so I went and bought an ultra fine mist.  I like that better.

An interesting fact about the change of antibiotics.  So, the lovely bacteria that grow in my lungs also will be in my sinuses (I never really thought about that).  So the Cipro doesn't do much for Stenotrophamonas!  Imagine that?  So, the Levaquin is a much stronger guy and should be able to help me.  We are avoiding Bactrim for the obvious allergy issue (post here).  Here's to hoping this sinus infection gets the hell out of here!!

So, onto PFTs.  I decided it would be fun to go back to 2015 and 2014 of this time of year to see where I've been before and how I'm maintaining.

                         11/1/16       8/16/16         11/3/15         12/10/14
FVC                  99%               99%                  98%                    97%
FEV1                89%               88%                  89%                    85%  
FEV25-75%     69%               64%                  68%                    52%

It's actually kind of cool to see that I'm steady, but maybe even up just a smidge (especially in the small airways - FEV25-75%).  Could this be a result of actually using my vest?!  All the shaking could be paying off and actually making my airways better?!?  That's pretty cool.  I guess I shall continue with the beast and look back next year at this time and see what's going on!

(side note - I'm currently off of Cayston)

And why not end with a Halloween pictures of my precious bullies.  Sarge and Stella are WVU Mountaineers and T-Bone is the "rufferee"!  Oh, how I love them :)






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