Monday, July 30, 2012

PFTs and Clinical Trial

I get so frustrated with myself when I forget to finish a blog.  Here's one I started last week sometime...sorry for the delay :)

I'm beyond excited to be a part of a clinical trial!  I don't mind being a guinea pig :)  I've gone twice now and have 1 more visit left.  On the first day, I rode a bike and was hooked up to a bunch of machines measuring my heart rate, breathing, O2 count, etc.  I performed a max test, meaning I pedaled until I couldn't pedal any more!  I could have kept going (and I'm frustrated I didn't go longer) but my legs were exhausted, they couldn't pedal anymore...the lungs were feeling great.

So on my second visit, I worked at 20%, 40% and 60% of my max.  I did some PFTs, and was hooked up to all the monitoring devices like the first time.  Then, I had an ultrasound on my arm, so the doc could see my arteries and how the blood was flowing.  It was pretty cool!   I was given a few meds and after a 2 hour break, we did it all again.  They also tried to draw some blood, but my veins refused to cooperate and they got nothing!

I am due for my third visit in the next couple weeks and we'll do the same thing as my second visit (and they are hoping for some blood that time!).

Also, I went back to the doctor for some PFTs on July 20th to see if we could narrow down if I'm asthmatic - which might be causing the chest tightening.  I drug my friend Amanda along, she was quite the trooper!  I had a good bribe since we left for the beach right after for a long weekend.  The lung functions were good - after having a treatment of Albuterol, I only went up about 3%, so nothing dramatic to indicate Asthma - yay!  But, back to square one as to what's going on with the chest tightness.



Tuesday, July 10, 2012

CF Appointment

Well, my quarterly appointment has come and gone, leaving me happy to report good news!  I'm down a few pounds (woohoo) thanks to my new workout routine and the lungs are doing good.  My FVC was 100% and FEV1 was 90% - I had done a round of Cayston about an hour before the test.  And thankfully, Friday was the last day of my 4 weeks on Cayston...so I had a happy day!

I told the doc about my chest tightening which occurred again on our West Virginia camping trip.  It felt like an elephant was sitting on my chest and I could not take a deep breath (kind of freaks you out a bit).  But, it went away.  It only happened one other time (this past February) and we couldn't find any common denominators between the two occurrences.  So, now that Cayston is off, I'm going to go back for some more lung functions on the 20th to see if they can see anything different.  I'll let you know how it goes!

 Also, I'm going to be participating in a clinical trial about arterial health in lung disease.  I'm pretty excited to get to do some kind of trial - I don't mind being a guinea pig :)  My first session is tomorrow, so I'll share all the nitty gritty details after my appointment.

That's pretty much all I know for now...have a great rest of the week!

Friday, July 6, 2012

Camping

So I've been MIA again, but only on account of being busy or having my nose stuck in a book.  These days, I much rather read then write - sorry!

A few weekends ago, we had our annual summer camping trip with Will's family and as usual, it was a blast.  Our friends Matt and Brandy joined the camping crew again this year (they are brave souls!).  The guys kayaked and the gals relaxed!  The puppies had a blast - they even enjoyed swimming in the Greenbrier River, just like Sophie used to!

The guys before their kayak trip
The Greenbrier River
Brandy and I floating down the river

Stella, Sarge & Abby swimming

Abby and Sandie (Will's Mom)




Not super excited to be stuck in "jail"

Tobi Podhaler Review

At my CF clinic in December (read here ), my doctor and I discussed starting the Tobi Podhaler to switch up Cayston.  Just like Cayston, Tob...