Wednesday, November 20, 2013

Catching Up

I'm so bad at this, perhaps I shouldn't commit to doing this next year!

Day 13:  I'm thankful that I get to participate in a CF study again, I enjoy being a guinea pig :)

Day 14:  I'm thankful for a relaxing day!

Day 15:  I'm thankful for time with my sorority sisters \^^^/

Day 16:  I'm thankful for a day with my bestie :)  We went shopping just the two of us and had the best day!!

Day 17: I'm thankful my hubby made it home safely from his trip!

Day 18:  I'm thankful that I got to have a girls day with my mom and aunt.  We have so much fun together :)

Day 19:  I'm thankful for another girls day with mom and aunt Arlene!

Day 20: I'm thankful for lazy days...yep, still in my PJs at 5pm :)

Wednesday, November 13, 2013

HTS Update

Well, sadly I have already missed a few days - oops!!  But, I'm back on target :)  We did some traveling and surprisingly, I managed to do my treatments, but when I got home, I forgot!  I went for 8 days straight, then missed 3.  Here's my evaluation:

Time:  I don't like that it takes 15-20 minutes to complete one treatment.  But, I have very little patience when it comes to treatments - I wish everything could be pill form.  Although I am using the e-Rapid, I don't know that it is necessarily faster.  (*John and other HTS users - how long do your treatment last?)

Equipment: Again, I use a slightly different handset then most others.  I do notice that I get a lot of moisture build-up inside the handset (more then Cayston) and when I give the handset a shake, it dribbles out on me.  Also, after about 5 minutes of use, the fluid is below the receptor area (not sure the technical term) where the liquid gets converted to a mist.  So, the rest of my treatment, I continue shaking the handset to get the saline to keep misting.  The machine beeps when my Cayston is complete, but I have yet to have this beep.  Perhaps I'm not giving it enough time, but I figure that if the HTS is gone and mist isn't coming out...I'm done.  The convenience of using the same machine as my Cayston will be great...especially when I travel.

Results: I have noticed an increase in sputum (if you aren't a CFer or don't like reading about mucus...then stop here!).  The sputum is a thinner consistency then it normally was prior to starting treatments. Also, right afterwards...there is a salty taste.  Sorry to be so gross.  My coughing is a bit increased and it sounds like stuff is looser in my lungs.  Will said I coughed the second night after I started the HTS, but I slept right through it.  He said I haven't coughed any more since then that has disturbed his sleep :)  Overall, I'm happy.  I'm not hooked quite yet, but I don't hate it.

Tuesday, November 12, 2013

Catching up on my thankfulness

Day 4: I'm beyond thankful for CF supporters and fundraisers!!  Without you, we wouldn't be making such great strides :)

Day 5:  I love this lizard that lives on our back porch.  He likes to surprise me sometimes by hanging out on the screen door handle!! LOL

Yes, I'm the crazy person taking pictures of a lizard on their porch :D

Day 6: Petsmart rocks!! When I have lazy days, they are wonderful at bathing the pups for me :)  And they even got a cute bandana this time!

Day 7:  Sirius Radio :)  Taking road trips is so much more enjoyable - I will NEVER have a vehicle without it!
I love Howard Stern :)

Day 8: Spending time with my brother-in-law and his girlfriend.  We spent the weekend in West Virginia with them and had a great time!

Day 9:  Football!  Who would have thought!!  Love going to games and getting to enjoy the whole experience!

Day 10:  Being able to sleep on the drive home and recover from the game :)

Day 11:  I'm thankful that there is a day to honor our Veterans.  Thank you to all that have served and are serving!!

Day 12: I'm thankful for my home.  Like Dorothy said in The Wizard of Oz:  "There's No Place Like Home!"

Sunday, November 3, 2013

Day 3 of thanks

I'm thankful for a beautiful fall day...and so are my pups, they got to play outside (and get in trouble!)

Saturday, November 2, 2013

Giving Thanks and HTS

Well, in keeping with my tradition of 30 days of thanks during the month of November, I shall start on day 2.  However, this year, I'm going to keep it simple and do a picture of what I'm thankful for.

My first 2 days involve this guy:

My hubby :)

Day 1:  I'm thankful for Date Nights.  Even after 7 years of marriage, we still have date nights and get dressed up to go eat and or do something just the two of us.  <3

Day 2:  I'm thankful for football days with my hubby.  Like today, we ran some errands in the morning then spent the rest of the day in front of the TV watching college football and eating junk food :)

Also today, as I set out to do...I started my Hypertonic Saline (HTS)!!! Woohoo!

A little excited...moments before the coughing began

Man, this stuff is STRONG!!! Feels like I'm breathing in the ocean.  A few deep inhales led me to coughing.  I won't lie, I couldn't keep my mouth on the mouthpiece the entire time...I had to take a break because it was just too potent.  I meant to see how long it took for a treatment, but I forgot...will do that tomorrow.  Unfortunately, it is not as fast as my Cayston :(

I'm using the e-Rapid which is a handset that is supposed to make the treatment time a bit shorter then the standard treatment which can take around 30 minutes.  Perhaps that it why it felt so strong...I don't remember my trial being that powerful.  It was definitely salty but not to this extent.  I did notice the back of my throat felt a little funky towards the end of treatment and right afterwards...kind of irritated.  But, its gone now.

I did cough during the treatment but I think thats because of the overwhelming taste (if that's the right word).   I haven't coughed any more since the treatment so we'll see how I do overnight.  I tried some huffing exercises to help loosen things up and cough, but not much results.

I'm supposed to do the treatment twice a day, but I'm going to do one for the first few days so I get accustomed to it.  I make my own rules :)

Friday, November 1, 2013

CF Appointment

Wednesday was the day.  I was rather dreading it because I knew it would take forever due to all the annual tests that needed to be done.  So, I dragged my mom along with me :)  There was a day that she never missed an appointment, but now that I'm a big girl, I go by myself most of the time.  So, it was nice to have some company this time.

The day started at 8am with my oral glucose test.  And of course, my veins wouldn't cooperate, so I had to get stuck twice just to get the first drop of blood :/  They took 11 vials that time...checking my vitamin levels and all the other "stuff" they look for.  They changed the drink from orange to fruit punch! I don't get why people complain about having to drink that drink...its not bad.  Yes, its a little thicker and sweeter, but it by all means in not horrible.  I chugged my 10 ounces and away I went :)

So, from there, I headed over for my bone density scan.  I got there early and they took me right back!  As always, that's super easy and quick.  So then we headed over to x-ray, which I was also early for.  I was called right back, took 2 shots and I was done!  My only complaint was that I was starting to get hungry!!!

My appointment with the CF clinic was at 10am, but it was around 9:30am when I got there and they called me right back.  My clinic always has us do our PFTs before meeting with the doctor so they can look at my scores before seeing me.  I would typically go to the PFT lab, but they have implemented a new rule to help with infection control.  The PFTs are now done in our room we see the doctor.  One less place to run around too was great for me!!

So, I did my PFTs in my room just before Dr. Forseen arrived.  I'm happy to report they are great (with exception to my small airways)!
FVC - 110% (last time 97%) 
FEV1 - 93% (last time 87%) 
FEF 25-75% - 57% (last time 59%)

The FEF 25-75% is what measures my smaller airways.  I'm still not sure why it is a lower used to always be in the 80 percentile?!?!  Probably cause I need to do better airway!!

The social worker came in for our annual meeting and happily I haven't had insurance issues and don't need much from her, so we chatted for a few minutes then she left.  I didn't need to see the respiratory therapist or dietician this time, so Dr. Forseen came right in.  

She was happy with my PFTs and asked how I was doing on the Fosamax (for my osteopenia).  Had no problems to report there.  She asked if I started the hypertonic saline and I of course said, nope!  BUT, I am in the middle of my off cycle for Cayston, so I would like to start it now.  I wanted to get an idea of my PFTs off Cayston and off HTS and now I have it.  So, my goal is to start it tomorrow.  We talked about my exercise routine and personal training...which has slacked off the past few months but I'm back at it now!

She listened to my lungs and said they sounded great, then we chatted about Great Strides and the CF Education Day.  Due to new guidelines from the CF Foundation, only 1 person with CF can be at the Education Day because it has always been indoors and they don't want to increase the risk of sharing germs amongst us CFers.   Understandable, but sucks too.  So, they are brainstorming ideas about how to make Education Day an outside event where the only limits on CFers to attend is that they can't culture Burkholderia Cepacia (which is a nasty little bug that lives in the lungs - fortunately, I don't have it!)  So, they are thinking about combining the two events.  I gave my 2 cents then realized I was late for my blood draw for the 2 hour glucose test - oops!  So, I ran down the hall for the blood draw then came right back.

And I was done!! Woohoo!!! Mom and I were pulling out of the hospital at 11am.  We went and met Will for lunch, then we had a girls afternoon and walked around downtown Aiken, then of course, had to hit Target!  When we got home, Mom helped me hang some pictures and things around the house.  For some reason, I'm not very good at hanging stuff or seeing the vision, but thankfully she is!   I bought these letters a few weeks ago and was just waiting for her to come to help me hang them - I love how it turned out :)  

Hung these in our bedroom
So, Wednesday was a great day! Got a good report from the doc and some much needed Mommy and Me time :)

Being that Halloween was last night, here is a pic of my crazy bullies as Eeyore and Pooh!!

Sarge as Eeyore and Stella as Pooh
Aren't they cute from behind too :)

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...