Welcome back Oscar…Oral ABX are stupid!

Today is brought to you by the number 53. What is the significance of 53? It is the number of days since I last finished IV antibiotics (7 weeks 5 days). As I updated in my last blog I grew out some new bacteria called Achromobacter xylosoxidans. I’m going to call it just ‘Achromobacter,’ from now on because that is a lot to type. Continue reading

A little of this and a little of that

Let’s see….where to start.  It’s been 7 days since my power port was placed.  I’m healing nicely.  There has been minimal swelling and bruising.  The most painful part is the incision healing.  I have been using ice packs for the swelling and bruising.  There is a steri-strip over the incision that will come off when it’s ready.  I sure do want to rip it off though, it is making it to where if I move a certain way it pulls and is painful.   Continue reading

CF Clinic, Power Port, Grief

Yesterday (5/5/16) was good ol CF clinic.  Nothing spectacular to report there really in the sense that we didn’t change anything or add any extra tests.  My PFTs (lung functions were) basically the same.  My FEV1 was .93 L/ 31%.  My first 2 attempts were identical at .89 L/ 30%.  If I were a healthy (NON CF) Shannon the predictable FEV1 I should get is 2.96 L.  That is based on my age, gender, height, weight and race.   Continue reading

2 appointments today

Today was a busy fun filled day at UT hospital for 2 doctor appointments.  Ok, it wasn’t so fun filled but it sure was a long one.  It was about 7 hours today.  I had a big lapse of time between appointments which I spent in the cafeteria having some lunch and watching a movie with my sound canceling headphones so I could actually hear the movie.  Oh yes and of course answering emails, Fb messages and comments,etc.   Continue reading

My reality at the moment

My day starts with lots of coughing which in turns means I need to do a breathing treatment and vest session ASAP to get as much junk out as I can and to get my lungs to calm down. Usually I’m coughing quite a bit throughout the night as well. I always try to “cough it out” to avoid getting up to do a treatment, but that doesn’t always work. I haven’t had uninterrupted sleep in so long. I can’t remember when the last time was. I have just learned to sleep in spurts.  If you total the actual amount of time I am asleep at night it would be between 4-6 hours most of the time, between the coughing, possible breathing treatment to calm the coughing, bathroom breaks and tossing and turning. Continue reading

2fer – health update & transplant talk

It was great to have my sister and aunt here for a few days.  They got here Wednesday afternoon and once we had some girl talk we decided to go for pedicures.  Thursday was mom’s birthday so we were off to mom’s favorite Japanese steak house for lunch.  After lunch we were just out and about.  I had to cut our outing short because my stomach was not treating me nice and I needed a good breathing treatment, not just on my travel nebulizer. Continue reading

Just a little update

Today is day 25 of IV Zerbaxa, counting from day one in the hospital.  I was switched to oral Levaquin from IV when I was discharged from the hospital 14 days ago.  I tolerate IV Levaquin way better than oral Levaquin.  Levaquin makes me super nauseous therefore I am nauseous most of the time.  My stomach is super sensitive right now so I’m trying to eat lightly.  I’m trying to eat things I ‘think’ will be smooth on my stomach but it doesn’t seem to be working all that well. haha  Continue reading

Being my friend

What does it mean to be my friend, to love and care for me?  I’m going one step deeper with this one.  What does it mean to be my friend, me being a person with Cystic Fibrosis.  I’m not going to “beat a dead horse” on this subject but it has been on my heart with all that’s been going on with me.  Continue reading

Hodgepodge post coming at ya

I was paroled from lock up on Monday the 7th after 12 long days.  It seems that every time I’m on the ride back home from the hospital that I notice all sorts of new things along the way.  This time it was road construction.  The Smokey Mountains are never a new view to me but the drive from the hospital to our house has one of the best views of the mountains and I am always in awe of them.  Never fails, it’s my favorite drive with the best view.  It’s home to me. Continue reading