And the verdict is…

…IVs for 2 weeks then reevaluate how I’m feeling to determine if I need to continue to the usual 3 week (21 day) course.  I will be doing the same antibiotic cocktail that I did last time in May/June which was Aztreonam (2g every 8 hours) and Amikacin (25 mg/kg (1250 mg total) every 24 hours). I have managed 3 months without IVs which is possibly the longest in awhile.  I will be doing labs every Monday, Wednesday and Friday to monitor my creatinine (kidney function) and all the other normal stuff. Continue reading

Trip to KC

This is probably going to be ALL over the place so bear with me and enjoy the ride…haha  Let me pick up after my last clinic appointment…

We headed to Kansas City the last weekend of July/first weekend of August for my husbands 20 year high school reunion.  It stated off as a super short trip.  Flying in on Friday afternoon and flying home Sunday morning.  I decided to change my return flight so I could stay in KC to help my mom after her most recent hospital stay and to squeeze in helping my dad get situated in their new house.  I also set up as many lunch/dinner dates and “swing by” visits that I could with friends.  Since we aren’t back in KC that often we try to squeeze everything in that we can.  I never want to sound like I’m royalty or sound snooty by saying that “there is one of me/us and lots of you,” meaning we wish we could see everyone but that’s a lot of people!  Therefore I/we try to set up a central place for lunch, dinner or drinks and say this is where I/we will be if you are wanting to see us/me.  I have a hard time saying it that way because I don’t want anyone to take it as though I think I think I am better than someone and that everyone else’s time doesn’t matter because it does.   Continue reading

Well hello, “Oscar,” we meet again

I overcame the lung pain and it finally dulled by Sunday to where it only really hurt if I was taking a deep deep breath.  My morning have been pretty bad.  Mornings in general are my worst time of the day as far as coughing and sputum production go.  Sitting up after laying flat during the night stirs up all of the junk that has settled and the coughing starts.  I have always said that mornings are NOT my friend.  If I had a way to skip them I would.  It hurts my lungs/chest and head along with making me out of breath.  I have to catch my breath and try not to cough so I can walk to the office to do a breathing treatment without running into walls or even peeing myself when trying to walk and cough at the same time.  Yep, that’s the real stuff right there. Continue reading

Holy lung spasms batman!

There’s nothing like being woken up by your lung/back spasming at 5am.  Luckily I had a few pain meds left from my kidney fiasco a few weeks ago.  They took the edge off of the pain.  I wasn’t able to take a deep breath without my lungs freaking out and spasming.  I had to take short little breaths as to not expand my lung very much.  It just takes your breath away when there is pain when you breathe.  I emailed my nurse and they had me go for an x-ray to rule out a collapsed lung (small or big).  It takes great talent taking in a deep breath for an x-ray when it hurts.  Add that to my list of super powers…haha.  The x-ray was fine.  So that means that it is just good ol pleuritic pain.  Continue reading

Tennessee Allergens SUCK!

We know that living in Tennessee has taken a toll on my health in the area of lung function.  I have dropped 24% in the 22 months living here.  I have asthma along with CF so that is a double whammy.  I did skin allergy testing about a year ago and it showed that I wasn’t allergic to anything.  I was hoping that it would show something so I could have some answers as to why I was having such a hard time.  I was bummed.  I wanted answers.  Continue reading

Let the roid rage begin!

Well well look what we have here…rebellious lungs, big surprise there!  I sent my nurse an email on Friday letting her know about the blood and that I felt tight and wheezy.  I also let her know that I stopped the TOBI podhaler since I am pretty sure that was the culprit to the blood AND the tightness and wheeziness.  She agreed and was “ok” with me stopping it.  As the weekend went on I was no better and maybe worse off.  I texted my nurse to ask if I could go ahead and start some prednisone that I had on hand at home.  She never got back to me because the doctor never got back to her.  She texted me this morning asking that I call her when I was up.  Continue reading