Skip to main content

CF News

Time flies when you're having fun!  I have lots of stories to share, but rather than write a book, I'll break it up into a couple different posts.  I'll start with CF stuff.

I went to New Jersey to visit my family a few weeks ago.  I was staying a week and got to "babysit" my younger sisters while the parental units took a trip.  So, the night I arrived we all went to dinner and I realized I only had 3 pills (my Zenpep to digest my food) with me.  Then, it dawned on me that I didn't even PACK ANY MORE!! OMG - who does that?!?  Thank heavens, my amazingly awesome doctor gave me her cell phone number some time ago so I called her.  We found a local pharmacy that could get me some by the next afternoon, so she called a prescription in for me.  I took my 3 pills with dinner then waited til the next day to eat lunch :(

Here's me being happy picking up my meds :)

After getting back home, it was time for Cayston.  Thankfully I remembered to order it while I was gone so it would be there when I got back.  As usually, my Cayston cough kicked in around day 2-3.  I didn't wake up at night this time hacking up a lung, but I was coughing more during the day.  Its simmered down now, so I'm happy (I'm on day 9 now).

On other CF news, I have my quarterly appointment on Friday.  Here's hoping it goes well!  My sinuses are a little messed up due to the pollen here (its insane - everything is yellow and gross).  Also at my appointment, I'll have my trial of Hypertonic Saline.  So, we'll see how that goes!

Lastly, the Augusta Great Strides walk is getting close - just about 2 1/2 weeks away.  My team has about $3,500 so far.  I've been procrastinating a bit this year, which frustrates me, but I made some progress today on getting things organized :)  Go CF Stinks!!!  If anyone wants to donate to support my team, just go here!


  1. I'm glad that you seem to be doing pretty well! As you know I am eager to hear about that HTS trial you will be doing. I still need to make that HTS post its a good one. It will contain the reasons why we should be using HTS.

    I think I found you on FB! I sent you a friend request as you have been mia on blogger so I thought maybe you were on FB more......Anyway my user name is not really my name. Well yes and no. The profile picture is Alayna basically half clothed :) The username does have John in it but also has my wife's nickname. You do not have to accept my FB friendship if you want to just stick with blogger I am ok with that. Just thought it would be nice to use other sources of social media to communicate.

    Good luck on Friday!!!


Post a Comment

Popular posts from this blog


I'm back!!!

Unfortunately, I've been MIA due to some family medical stuff.  We had quite a scare with my stepdad.  Thankfully, he is out of the hospital and recovering!  He will be staying with Will and I for a while so we can help nurse him back to health.

I never thought about losing a parent before.  As I grew up, I lost my grandparents and understood that I would have to worry about losing others as they too got older.  But, I never imagined being 30 and having to think about a parent leaving my life.  What a scary thought.  It definitely got me thinking.

Life is precious.  I can't sweat the small stuff.  I shouldn't worry about stupid things that really don't matter.  You never know how much time you have left in this world, so enjoy every moment that you can.  Have fun!  Let those that you love know that you love them.

I am not done with my parents.  I still need them ALL.  I don't think that will ever change though.


My little bully babies are growing up.  Sarge & Stella turned 6 at the beginning of July and T-Bone turned 8 at the end of July.

We celebrated Sarge & Stella's birthday at home with some special treats from the local pet store.  T-Bone got to be at his favorite place on his birthday (our cabin in WV).  Unfortunately I was a bad dog mom and forgot his birthday hat and treat, but he got extra loving and sang to multiple times.

T-Bone had his bi-annual check up just before his birthday and had a good report.  We are changing his eyedrops due to the formula change in what he was using - it was making his eyes red and itchy. And then, in his ear (not the one that just had surgery) we noticed a tick like thing in one of the folds. He got very irritated with us when we messed with it, so thankfully his appointment was the next day, so I figured I'd let them piss him off.  Turns out, its not a tick.  The vet said it looked just like the mass that he saw in his other ear cana…

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…