Skip to main content

CF Appointment

Yesterday was the big day - my first CF appointment of the year!  I was glad it was just a fast check up with PFTs, visit with the nutritionist and then my doctor.  I was annoyed my lung functions were down a touch.

                    2/3/16      11/3/15      3/11/15      3/21/14
FVC              95%           98%            99%           105%
FEV1            84%           89%            85%            94%
FEV25-75    60%           68%            54%            68%

As you can see, it's not a huge drop, but they were a bit concerned...maybe because of the Stenotrophamonas?!  So, I'm to be extra alert of my cough and how I feel so I can call and report any changes.  I will say my cough is slightly increased, but I'm thinking that is a result of Cayston.  I feel fine, which is good.  I'm not having any problems working out or keeping up with my activities.  As usual, I gave them a sputum culture, so we'll see if anything funny shows up in that.

However, looking back to 2014 - I sure don't like seeing a 10% drop! Eek!

I met with my new nutritionist.  Come to find out, she teaches the combat class at my gym in the evenings!  What a small world.  She asked about my diet and I told her that I'm a good eater, but I have a sugar addiction.  No Lie!  Not only have I been eating my Sour Patch Kids but I've developed a new craving for Reese's Pieces - yummy!  I probably should be embarrassed to say, but I've eaten the entire 4 lb bag that I bought on Sunday.  Thank you Sam's - NOT!!

So, I'm excited for Lent to start next week.  So long candy!!  Maybe I can get toned up a bit without all the crap in my system.

Other than that, all is well with me :)

On a side note, when we check in to the CF clinic, we are given a face mask to wear.  Of course, that generates lots of funny looks.  But oh well.  I make sure I wear my mask while in the CF Center area as I'm highly likely to run into another CFer and I don't want to pass them my bugs, nor do I want to get their bugs.

However, I was a bit perturbed to see a fellow CFer not wearing her mask.  One lady checked in and halfway put her mask on...just covered her mouth but not her nose - rather odd.  Then, a second lady came in behind her and got a mask.  Then, she just hung her mask on her arm! Really?!?!  I mean, she looked right at me wearing my mask and clearly avoided putting hers on! I'm not sure if they were mother/daughter or sisters, but they were definitely both patients - the nurse called them back together.

I'm not trying to be hateful, I promise, but I was really pissed.  If we don't watch out for each other, than who will?  We are on the same team!  We have to support one another and help protect one another.  It sucks we aren't supposed to be near each other, but that guideline is there for a reason.  I'm healthy and I work my ass off to stay that way...I don't want someone else's lack of caring or inconsideration to put me at risk.  I hate the mask, who doesn't?  At least while were are at clinic, let's be considerate of one another.

That's the end of my rant.

Have a great evening!


Popular posts from this blog

SmartVest Review & CF Appointment

Well, here is the long awaited official review of my new SmartVest SQL.  I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.

Weight - it is MUCH lighter than my ancient Hilrom Vest.  By all means, it isn't light but definitely a great improvement from my older model.  I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn).  Also, I can set different programs based on how long I want to use it, etc.  It's quieter!!  Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume!  And, the dogs aren't scared of this one as much!There is only 1 I'm not tangled up :)And it comes with a rolling case (that looks like a re…

CF Updates

Greetings friends!

I had the pleasure of going to my quarterly CF appointment on Tuesday.  It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit.  (the original funk started here)

I finished my round of Cipro on 10/29.  And still had a head full of congestion, sore throat and ears. Bummer.  I thought I was starting to feel better for a split second, but it didn't last.  Thankfully, my lungs were still feeling good :)  We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.

So, I headed in to the doc on Tuesday.  My PFTs are holding stable so that makes me happy!  More on that in a minute.  During my exam, she could see there was still fluid in my ears along with my red throat.  Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.

So, the plan of attack is this:

1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin dail…

Feeling Good Guilt

Having Cystic Fibrosis is not something that consciously crosses my mind on a daily basis.  I take pills and do breathing treatments throughout my day, but I just do them out of habit.  I don't sit down to eat a meal and say, "oh, I have CF, I better take my enzymes".  Instead, I just subconsciously walk to the cabinet and pull out the bottle, or if I'm out to eat, I reach in my purse and grab them.  It's just like brushing my teeth before bed every night.

While I know I have a disease that is incurable.  I find myself just living life and doing the many things that I want to do.  While this seems well and good, it's also unfair.  There are other CFers fighting for their last breath, waiting for a second chance at life with a lung transplant, or being hooked up to an oxygen tank and dragging it with them wherever they go.

I often tell people that I am a bad example of CF.  When explaining CF to someone, I talk about the deterioration of the lungs, challenge…