CF Happens

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%.

I am doing another week of IVs which will be a total of 21 days, as it is my usual.  I will do labs on Monday and Thursday as usual.  All of my labs have looked fine so far.  I will finish IVs on Saturday the 21st.

Now for the big question….”Do you feel better?”  That is a loaded question.  “Better” is a relative term.  I don’t like to use “better” for the simple fact that when I say I am feeling “better” some people think that means I am ALL better and not sick anymore and that is not the case.  CF affects my everyday life no matter how I am feeling, good or bad.  You learn to cope and adapt to your normal, whether it’s chronic pain, coughing, shortness of breath, stomach pains, etc.  With that said I am feeling better than I was when I started IVs and that is a plus!  My cough has calmed down some.  It won’t ever go away because coughing is what I do and I do it well.  Well I guess I should say that my cough will go away if/when I get a new set of lungs but we aren’t to that point just yet.  The time I can take between treatments has stretched out some (at times) so that’s good but once again I will always do breathing treatments multiple times a day.  I’m still tired and worn out.  A lot of that is do to the IVs because they are draining.  Doing IVs every 8 hours with only an hour to budge either way is very regimented and I’m a stickler for being on time when it comes to IVs.  Having CF is just draining enough in general.  hahaha  I require more sleep than others because I need to fill up a reserve tank for the times that I have lots going on.  I don’t know that that thought process has really ever worked, but it sounds good right?  Right now I attempt to go to bed around 11pm, if I’m actually sleeping good then I won’t wake up (hopefully) until my husbands first alarm goes off at 5am.  I then hook up my IV, set a timer and attempt to go back to sleep.  Timer goes off, I unhook, flush line.  By this time I am listening to my bonus son’s alarm going off.  Therefore I pretty much awake from 5am until 7:10am when the kid leaves for the bus stop.  I then attempt to go back to sleep and sleep until I wake up if I have no where to be.  On average I get about 7-9 hours of sleep all broken up so that is exhausting at times.

All in all today was a good day.  I am going just for lung functions on the 25th to see what they are after finishing IVs, kind of like an experiment.  haha  I also am seeing an ENT (Ear, Nose & Throat) doc on Tuesday the 17th.  I haven’t been to see an ENT in a few years so who knows what he will find up there.  My sinuses aren’t the best so you never know.  I’ll update after that appointment.

Until next time…