Impromptu CF clinic appointment

I haven’t been feeling the greatest for over a week.  I’ve had an increased cough along with increased sputum (what I cough out in case you don’t know what that is).  I have been having trouble sleeping.  I also have been more worn out and more short of breath and needing to use my oxygen more often.  I called my CF nurse to ask for IVs and I got an appointment with the doctor instead.   Continue reading

CF Clinic Day

The first bit of news is that my dad is here to visit for a week…yay!!!  He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them.  Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha

Today was a good clinic day.  First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick.  I have been having good days and bad days as per my normal so I was curious how my appointment would go today.   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

October CF Clinic update

Today was a good day and a good clinic day at that.  First stop is always the scale, everyones favorite thing.  I have been keeping my weight up which is a good thing medically speaking but not so good in the clothes department.  I have gained 12 pounds since January, 4 of which have been since last month. There is a lot of yoga, sweatpants and other workout gear being worn around here.  Mind you, there is no “working out” going on here except shoving myself into my skinny jeans/non stretchy shorts and “fitted” tank tops. Of course there is the real exercise going on at Physical Therapy for my shoulder, which is getting much better by the way, but that is it.  hahaha Continue reading

Clinic day!

Today was CF clinic day.  I also had to get my labs before my appointment.  All in all it was a good clinic appointment.  My lung functions are up from last time.  My FEV1 was 1.47 / 50% today and last time they were 1.37 / 46%.  At least we are going in the right direction.  I have been hovering around the 1.50 +/- for the last year so we are pretty much calling that my new baseline.  When we first moved to Tennessee July of 2013, I was at 1.72 / 56%. Continue reading