Skip to main content

Cayston, Vesting and a Research Study

I finished Cayston on Friday - yay!! Now I get to enjoy a 4 week break.  But, I will still keep up with the HTS and vest.

As for the vest, its official that everyone in the house despises the thing.  For some reason, the dogs now run out of the room when they see me start to put it on.  If Will is home, they run to his office and hide under his desk.  If not, they run back to our bedroom and hide on their bed back there.  Its very strange, they used to sit with me and that all of a sudden changed in the past two weeks.  

I vest right in the living room.  I know if I put it somewhere out of plain sight, I would not do it as much.  Plus, its right by the TV, so I can watch a show (at top volume, of course) or play on my iPad.  I think the family should get to be a part of my treatments ;)  Although, Will does not enjoy how loud it is and anxiously waits for it to turn off.

Here's some proof that I actually use my vest :)
The itching has gotten MUCH better.  I still turn the vest backwards and that really seems to make all the difference.  I do get some discomfort when I have the pressure turned all the way up and the frequency is high, but I think that seems to be the most effective, so I tough it out.

On another note, I'm looking into a new research study in San Francisco!!  I'm pretty excited about it, but will share more info when I make a decision.  Right now, I'm talking to my doctor and making the decision if I should participate.  Unfortunately, travel costs are not covered, so it will be up to us to pay for the 5-6 visits to California.  But, it would definitely be worth it if my doctor gives me the thumbs up.


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…