CF Clinic: February 2012

Yesterday was a long but good day.  I had the earliest appointment I’ve ever had at U of C yesterday.  I ended up having to leave my house by 6 AM to make it to an 8:30 liver ultrasound. Overall, the morning commute wasn’t nearly as bad as we expected. We made it up there by 7:45 and I even got in a little early for my ultrasound! This was great because in order to have my liver ultrasound, I was required to fast for 8 hours, which in turn made me quite crabby.

After the ultrasound was finished, my mom (who is amazing and comes with me to appointments when I need her) and I went to go grab some breakfast – I had an awesome Denver omelet which helped fill me up and make me a more tolerable person to be around.  Following breakfast, we headed up to my CF clinic.  My original appointment time was 11:30, but thankfully my clinic got me in much earlier! I ended up getting into a room at 10 AM.  I ended up seeing my respiratory therapist, my nurse practitioner, and my CF doc so it was (as always) a long appointment.  Here’s an overview of what was said/done:

Lung Function: My FEV1 was surprisingly unchanged since the previous appointment.  Ok, technically it was down 1% but that’s just a normal fluctuation.  Last time it was at 2.74 L which equates to 87%.  This time it was 2.72 L which equates to 86%. I’m definitely thrilled about this result.  Due to the few instances of hemoptysis as well as stopping the hypertonic saline 7% (due to hemoptysis), I expected it to be down.  I will gladly take that number, however!  My FVC was down a bit.  It was (not sure about numbers on this one) 140ish% last time, and I was down to 4.21 or 107% this time.  I’m not considerably concerned about this change.  A surprising one was my lower airways, my FEF 25-75% number.  Last time it was at 13% but this time it was up to 39%!!  Overall, great numbers.  Also, my docs listened and couldn’t hear a single crackle in my chest.  Very happy about my lung function this time around.

Weight: Officially up to 119.6!! The docs are very happy, and I do believe this may have something to do with my increased lung function overall.  I’m putting, and keeping, weight on which in turn makes me healthier.

Changes to my Current Routine: Due to increased heartburn, I’m going to be started on Prilosec.  This should help with the heartburn as well as help my enzymes work better, so it sounds like a great plan to me!  I’m also going to start on Advair which should (hopefully) help to open up my lower airways and help increase my exercise tolerance, since I have stress-induced asthma.  Basically, Advair is a long-lasting bronchodilator with a bit of a steroid in it. I’m excited to see how it works! In addition to this, I’m going off of 7% hyper-sal for good, and I’m going to start mixing my own 3%.  If I continue to have hemoptysis with this concentration, I will be put on Vitamin K but continue the hyper-sal.  My doctors really want me to get the benefit from hyper-sal, as I have never breathed better than when I was on it.

Liver: We should find out about my liver enzymes (previously elevated) and my liver ultrasound in a few days.  The tech said that my liver looked really good, but I have to wait to hear from the doctor to be sure.  Since CF liver disease, or a fatty liver can develop in CF patients, it was important to get the ultrasound done.

Overall, fantastic news! This was another clinic visit that made me realize just how blessed I am. I work hard to keep myself healthy, but I could be working even harder – EVERYDAY exercise, that’s my goal!


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