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 Cayston...so 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 
Running
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 things...like runts, but I won't stick up my nose to a banana any more...as 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 enzymes...lol.

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.


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...