IVs Update & Rising Star

I am on day 17 of IV Cipro and IV Aztreonam.  I am feeling “better” but I use that term loosely.  I also don’t want to jinx myself by saying I am feeling “better.” haha  However, I am better than I was.  Day 1 through about 4 was brutal with the fevers and recovering from my whirlwind trip to KC…12 hours driving there, 37 hours there, 12 hours driving back.  I felt horrible the first few days back home but I am happy to report I am better than I was.  I still get worn out pretty easy and try my best to take it easy.  The first week of IVs I did a lot of sleeping which helps.  I am now to a point where I feel like I can make it through the day without a nap, depending on what I have going on.  It is hard to be off your A game when there is so much that needs to get done.  For me and the OCD side of me it is hard to sit back and do nothing when there are things I could be doing.  I know, I know…”rest Shannon!”  I do my best.  There are days that I have no choice but to do nothing because my body makes me.  The other days I test the limits as usual. haha

The original order for IVs was 14 days.  I have come to the point where 14 days of IVs doesn’t touch the infection and I need more.  21 days has been my norm for awhile now therefore I requested another week of IVs.  I gave a sputum sample (hocked a loogie into a specimen cup) on Friday when I had my weekly labs drawn.  They will test it to see what grows and how much.  My last sputum culture showed heavy growth Pseudomonas so I am hoping it will be down to at least moderate growth this time after 14 days of IVs.  Preliminary results should be in on Wednesday and final may not be in until Friday.  I have another lab draw on Friday.  Once I hear the sputum results I will decide if I want to stay on IVs longer or change IV meds.  I will never eradicate the Pseudomonas at this point in my life but I can knock it down a few notches…or that is my hope.  Unfortunately, I am limited on what I can do to treat it.  One of the go to treatments for lung infections is inhaled antibiotics.  I can no longer take any inhaled antibiotic because it affects my asthma.  It makes my chest feel tight and causes bronchospasms (difficulty breathing).  I was on the TOBI (inhaled Tobramycin) drug study many moons ago and was on the drug for many years after it was approved.  It started to cause me problems about 7 or so years ago.  We have tried other inhaled antibiotics and gotten the same results.  The inhaled antibiotics go right to the source of the infection in the lungs where as IV antibiotics get filtered through the system.  Here’s to hoping I am moving in the right direction.

Now for the Rising Star part of this update.  I was asked to speak at an event for the Knoxville’s Rising Star that is in conjunction with the CFF Martinis & Movies Gala.  Each year they honor business professionals throughout East Tennessee. The chosen nominees exemplify leadership qualities, are active in volunteer roles, and have excelled in the business community. Those selected are among the most prominent, influential and successful.  Here is a little info on it. https://finest.cff.org/activity/martinisandmovies

I will be speaking to these business people who know nothing about CF.  My doctor will speak and have a Q and A and then I’m up!  I will share my story and talk about my everyday life so they can see what it is like to have CF, or well I guess how well of a picture I paint for them.  This event is on Wednesday the 12th!  I believe I will have at least 30 minutes to talk but I don’t know that I have that much to say if it’s not interactive. haha  They will get to ask me questions as well.  Now I need to get to writing my speech!  I have spoken to a large group of medical students before probably 10 years ago.  Funny part about that is I had one of the med students as a resident a few years later and they remembered me from giving my talk and Q & A.  I am always honored to speak about CF and to educate people.  I am an open book…as you know!

I will update later after I decide what I will be doing as far as IVs.  I may wait to update until after my speech so that I have more to talk about.  Stay tuned…

Until next time…

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