Skip to main content

I'm back!

Boy, I've been absent from blogging for a while.  I haven't even checked in to read anyone's posts - sorry!  I've got lots of catching up to do, so I hope I find you all doing wonderful :)

The past few weeks, I've been busy upping my time at the goal has been 5 days a week, and I did that the past 3 weeks with the exception of this past Thursday because we were traveling.  I've been trying to run more.  I alternate running and walking for 2-3 miles, just depending on whether I have a personal training session as well that day.

It is tough, but my lungs keep up with me.  I definitely am breathing harder and faster then those around me, but I'm doing it.  The more I run, the easier it gets.  Mondays usually suck because I skip Saturday and Sunday, so I have to get back in the swing of things...but by Friday, I'm loving it.  If only I had a treadmill at my house (hint, hint to my hubby).  I hate driving 15 minutes to the gym just to do 30-45 minutes of cardio...  But, oh well, thats what I have to do for now.

I STILL have not started Hypertonic Saline!! I'm not going to lie, I'm getting beyond frustrated and starting to lose my motivation to do it.  I start Cayston this coming weekend and I didn't want to start the HTS at the same time. Frankly, the 5 treatments in one day is very intimidating.  I wanted to get used to the HTS and see how that worked by itself and not have Cayston on top of it.  So, I'm probably going to wait another 4 weeks to get started on it...that is, if the handsets ever arrive.  The CF Pharmacy has always been an A+ for me, but for some reason the HTS is held up.  I know its not 100% their fault because insurance is a pain in the ass, but I'm not getting kept up to date on the progress.  I'm just very annoyed.

I guess thats all for now...going to read up on whats been going on in everyone else's lives :)


  1. I know 5 treatments sounds like a lot, but I have to say Hypertonic Saline is by far my favorite treatment. If I ever get a late start and haven't done HTS first thing in the morning I notice a HUGE difference in how I feel. I am not sure how junky your lungs are (I always produce a lot of sputum), but HTS and Cayston have really changed my life.


Post a Comment

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…