Friday, December 20, 2013

One of the best days

I had one of the most amazing days of my life this week.  I was selected to be highlighted at Gilead's annual sales meeting to represent a patient using I had a camera crew at my house on Tuesday filming and interviewing me.  Sorry Facebook friends, you all have seen these pictures, but here's a bit more detail about the day.

The crew was supposed to arrive at 9am, but unfortunately a few of them were stuck in Chicago and didn't get to fly in until Tuesday morning.  So we ended up starting around noon.  The hair and make-up gal, Erica, came in first to get me started.  They wanted to film me doing some of the things that I enjoy doing, so we started with riding my bike.

I <3 getting my make-up done professionally!!
Ready for a bike ride!
Shelly taking some pics 
Harris and Shelly going all out for the bike ride
A pow-wow

Next, rather then heading to the gym, we just went upstairs to my treadmill.

Touch ups 
And for my final activity - it had to include my family!!  Will and the pups joined me in the back yard for a game of fetch.  The pups didn't exactly cooperate, so it will be interesting to see how the video and pics turn out.

Hair & outfit change 
Playing outside
I <3 my family

After all the fun and excitement, it was time for my interview.  The crew turned my living room into a full blown set!  It was so crazy to see the lights, cameras and microphones everywhere!  I had another quick change and freshened up my make-up and took my seat.  I was asked about CF, my life, and using Cayston.  It got a bit emotional in some parts, but very enjoyable.  I felt so important :)

The interview set
Getting ready
Cheese :)
Next, my mom and I sat around the kitchen table looking at my baby album, which she was smart to bring.  They asked her a few questions about my diagnosis and what it was like having a child with CF.  Then, I got ready for the final segment.

I was filmed prepping and doing a Cayston treatment.  I was supposed to end my 4 week cycle on Sunday, but decided to save my last day of treatment for Tuesday so they could see me doing my treatment...I'm glad I did!!

These two guys put so much hard work into our day.
Harris, me & Brendan
Harris, Mom, Me & Brendan
Words can't express how much I enjoyed my day and what it means to me to be able to share my CF story with Gilead's team.  I'm so grateful for the amazing opportunity.

Monday, December 16, 2013

I ate a banana and other fun stuff

As my title says, I ate a banana.  This may not seem like anything special to most people, but to me it is a first.  As far as I can remember, I have never liked bananas nor anything banana flavored.  I recall trying them and not really enjoying the taste, but most of all the mushy texture.  But lately I have been trying to eat healthier so I have been stocking up on fruits and vegetables to snack on, rather then my favorite thing in the world - candy.  Last week, I decided to slip a banana into my cart at the grocery store.

Long story short, I tried it and actually liked it.  The texture had to grow on me, but I am shocked to say, I have now eaten FOUR bananas!!!!  Crazy!  I still don't imagine that I will like banana flavored runts, but I won't stick up my nose to a banana any long as it isn't overly ripened.

Also last week, I had a CF appointment.  I was anxious to see my PFTs now that I have been on Hypertonic Saline for about 6 weeks. AND...drum roll.......they are UP!!  My FVC stayed the same at 110%.  My FEV1 went from a 93% to a 97% and what I am most excited about are my small airways (FEF25-75%) which went from a 57% to a 68%!!!!!!  YAY!!!!  This stuff must be doing something good :)  

My doctor even emailed me today (I guess she was going back through her charts) and I've had a steady increase in my lung functions treads all year.  My FEV1 is up about 20% from April.  That's pretty cool stuff, if you ask me ;)

My blood work and chest x-rays were all good from my October visit.  And my bone density scan had some improvement!  There was a 4.5% increase in my total femur and no change in the lumbar spine or femoral neck.  Increase is great and I'm even happy with no decline.  Looks like the Fosamax must be helping me out.

And lastly, I have been selected to represent CF and Cayston for Gilead's annual sales meeting (side note: Gilead is the pharmaceutical company that makes Cayston).  So, I have a crew coming to the house tomorrow to follow me around and film my life for the day.  I'm beyond excited about the opportunity and can't wait to let everyone know about it.  So, I have a busy day tomorrow and better get to bed!

Tuesday, December 10, 2013

Med School

I happily had the opportunity to join my doctor on Monday to present to first year medical students - and of course the topic was...CF!  I joined her last year for the presentation, so I was very excited that she asked me to join her again.  She covered all the medical stuff like the history, epidemiology, and treatments.  Its pretty cool hearing all the nitty gritty scientific CF stuff...I love it.  Then, Dr. Forseen shared some statistics, which I always enjoy:

The oldest CF patient in the CF registry is 82!
The oldest patient at my clinic is in her 60s.
The median age for survival is 41.1 years!  Woohoo...I love seeing that number go up!

Those were my favorites that I could remember :)

After Dr. Forseen finished her presentation, she invited me up so the students could ask questions.  And they did!!  I got to share about how CF has impacted my life, my treatments, my diagnosis, and what happens when I don't take my

It was a great experience for me and I hope the class enjoyed learning about CF and putting a face to it. It wasn't just another lesson in a book.

Tuesday, December 3, 2013

Gee, thanks

Rather then trying to play catch up on the last 10 days of thanks...let's just say I failed at my attempt.  But in the spirit of thanks...

I am thankful that I have a husband that loves me.  I am thankful for my family, though I wish I could see them more often.  I am thankful for my truest of true friends.  I am thankful for my sweet Sarge and sassy Stella - I can't imagine life without them.  I am thankful that I have a roof over my head and food on the table.  I am thankful that I get to love and be loved.  I am thankful that I have opportunities to give back.  I am thankful that I can make a difference.  I am thankful for the blessings and the challenges that come my way.  I am thankful to be me.  

I hope everyone had a wonderful Thanksgiving and got to spend time with those you love.  We hosted this year and had a wonderful day.

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 :)

Thursday, October 31, 2013

The calm after the storm

I feel as though the past few months have been a roller coaster.  Constant ups and downs, sharp curves, and even getting flipped upside down.  I'm exhausted and emotionally drained.

I'm praying that life will slow down now and I can get back to being me.  In the midst of all the craziness of life, I decided to resign from my job.  It was a very hard decision to make because I truly enjoyed working part time and loved the people.  But,  I wanted to be fair to the company.  They had been so generous with allowing me the time away from the office to help with caring for my family.  I didn't know how long it would take and I didn't want to take advantage of their kindness, so I resigned.

A perk of my new found freedom, I decided that I would take a road trip, all by myself!!!  I loved it!  I drove up to visit my brother, sister-in-law and nephew in Indiana.  It took me about 10 1/2 hours and I only stopped once :)  I had the joy of staying there a few days and getting some extra cuddles in with my adorable perfect nephew.  I was in heaven.  I even babysat one afternoon so Michael and Amanda could go on a date.

After a few days, I headed to Pittsburgh for a quick stop on my way to West Virginia.  I got to take my Pap out on a lunch date.  It was awesome :)

I <3 my Pap!
Then, I ended my trip at our place on the Greenbrier River with Will's side of the
family.  As usual, it was a wonderful time.  We did some yard work to tidy up the place, then ate A LOT and road our bikes.  We did a 27 mile ride one day....ouch!!! My butt was pretty sore that night!

Yard Work
I'm helping Charles grill some burgers and hotdogs
Derik (Will's cousin), Mark (my father-in-law) and Brent (brother-in-law) 
TOOT Festival we went to
Julie, Charles and me on our bike ride
The gang before our ride
Me and my bike :)
A tunnel on the trail
My mother-in-law and me :)

I had a great trip - and found it pretty fun driving myself all over the place.  Can't wait to do it again soon!!

Thursday, October 17, 2013

Until I see you again

I've been absent from blogging lately, but wanted to share some news and dedicate a post to my grandmother, which we call Munner.

My sweet Munner passed away this morning after battling cancer since early this summer.  Well, I believe she won.  She is now home with the Lord and getting to catch up with all the loved ones that have gone before us, especially my Granddaddy.

Munner was a strong, dedicated, smart, and spiritual woman.  She loved her family and she loved the Lord.  She was the epitome of a southern belle!  She could fry chicken like no other and man, did she make some amazing mac n' cheese!!  She tried to teach me her tricks, but sadly, I was never able to master it like she did.

I'm beyond fortunate for the time I had with her these past 20 years.  I miss her terribly.   Love you, Munner!!!
At Munner and Granddaddy's 50th Anniversary Party - June 2008

At Great Strides - April 2013

Saturday, September 28, 2013


Life gets in the way sometimes, don't you think?  There are things I want to do and mean to do (like update my blog), but then I get distracted by Life.  Good things, bad things, and things in between.  So, here's a little update on what's been going on.

We've had a house guest the past four weeks, actually a patient :)  My stepdad has been staying with us to recover from his 5 week hospital stint.  Thankfully, I'm happy to report he is doing extremely well and almost back to his old self.  I got to play nurse and administer his IV antibiotics, flush the PICC line and keep up with all his meds.  I rather enjoyed that!  I even cooked a lot of meals for us all.

Since life was so crazy the past 9 weeks with the illness & recovery, I decided to resign from my job.  It was a hard decision to make because I really enjoy where I work.  Its only part-time, but it gets me out of the house and helps me use my brain.  But I am very fortunate that I have the opportunity to focus on my family and devote my time to them.

Unfortunately, my exercising has also slacked due the busyness of life :(  I was going to the gym 5 days a week, running 2 miles every time plus working out with a trainer 2 days a week.  After missing about 5 weeks straight, I'm lucky to get there 1-2 times a week.  I did make it to work out with my trainer 3 times this week!!  Getting back into the groove of things is hard.  My stamina is down, and frankly it hurts (a good hurt).  My body has forgotten what it feels like to be used and it screams at me when I use it...but, I keep pushing.  I'm going to get back into shape!

On the CF side, I'm in the middle of week 2 of Cayston.  As usual, I got my day 2 Cayston cough, but after that have been fine.  I still haven't started the HTS :/  I will do it - I swear!!  I had a belly ache for a few days...still not sure what that was about but I'm glad it is gone.

Here's hoping I will get back to my normal life soon!

Saturday, August 31, 2013


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.

Wednesday, July 24, 2013


As I previously mentioned, I became an aunt (again) last month.  Therefore, I have been doing some shopping in the 9 months leading up to these precious babies....some online.  So, I have been receiving baby stuff in the mail, as expected.  However, I didn't expect to receive baby formula and a "congratulations on your baby" package!!

I chuckled about it and passed the formula on to Brandy :)  Then, a week or so later, I received some coupons and a postcard reminding me to set up my registry at Babies R Us.  What?!?  I laughed more and passed on the coupons, but of course didn't set up a registry.  I started wondering what in the world I did to get this stuff...and I still have no clue!

Oh, but it was only the beginning!  Since this started back in May, I have received another package of formula, several coupons for formula, some coupons for birth announcements, and a few magazines for parents and babies.  Oh my!!  Is this a sign that we should have a baby?

To be continued...

Tuesday, July 16, 2013

CF Stuff

CF Appointment:
I had my CF appointment on Friday and I'm happy to report, I'm doing well.  PFTs are up a bit from last time:  FVC = 97%; FEV1 = 87%; FEF25-75% = 59%

My small airways are still lower than where I would like them.  Just 2 years ago they were consistently in the 80% range.  So, I need to figure out what is causing the slope and how to get them back up.  I'm going to do some digging into when I started Cayston and if I was on my cycle when I had lower scores.  Not blaming Cayston, but that's the only thing I've done differently in the past few years ;/

The doc prescribed me a bisphosphonate that will help with my osteopenia.  It will be a once a week medication.  I just picked it up today, so I'll get started this week.

I'm feeling pretty much 100% from the creeping crud that I had - yay!!  I was told not to start the HTS until I was completely better, so looks like I will be getting on that soon.  My only hesitation is that I am starting Cayston this week and I do not want 5 treatments a day.  No need to set myself up for failure on my first attempt!!

I think thats about it...happily, it was a pretty easy appointment!!

CF Study:
I participated in a study last summer, and I was excited to get to do it again!  I wrote about it here.  I went on Monday for my first day.  Just like last year, it is studying arterial health in CF patients.  Last year, they determined there was decreased function, so they are trying different medications to see if it helps.

Basically, I went and rode a stationary bike until I couldn't go any longer.  I guess the good thing is that my legs tired out faster than my lungs!

I'm going again on Friday!

7th Heaven

Happy 7th Anniversary to US!!!

I'm one lucky gal to have a husband that is so generous, smart, handsome, hard-working, trusting, loving...the list could go on and on.  I can't wait for many more years together!  I LOVE YOU!!

CF Appointment 3.14.19

And just like that, another 3 months has passed by.  I headed to my CF appointment on Wednesday, March 13th. I saw lots of my favorite peo...