Monday, March 31, 2014

CF Appointment


Better late then never, but I wanted to share about my most recent CF appointment (it was Friday, March 21st).  My brother-in-law and his girlfriend, Julie, were in town, so Julie got to tag along with me on my visit.  It was her first time joining me and she was pretty excited to see everything and learn more about CF!  I enjoyed introducing her to everyone as "hopefully my soon-to-be-sister-in-law"!! :) LOL

I was anxious for my PFTs as this was the first visit since starting to use my vest again.  I was wanting to see some improvement in my small airways to help prove to me that its worth it.  Drum roll....

                    Last Visit        This Visit
FVC                 110%               105%
FEV1                97%                 94%
FEF25-75%      68%                 68%

So, I'm a bit bummed that I didn't have any improvement.  Still great FVC and FEV1, but I wanted to see a higher FEF25-75%.  I am still determined to get it I'm sticking with the vest.  Maybe June will show some increase since I will have more time on the vest.

It was a very easy appointment.  Got to be gagged with the giant q-tip since I couldn't cough anything up for my sputum culture.  (I think Julie was glad about that - haha!)  I told my doctor about running and somehow talked myself into running a half marathon next February!  There is a big CF team and I'm gonna be a part of it...and Will too!  We talked about getting a new vest since mine is ancient!  So, my respiratory therapist sent me some info on the SmartVest which is much smaller, lighter, and quieter - woohoo!! It will cost about $12,000 (without insurance), so let's hope Blue Cross Blue Shield wants to help me get it!  *fingers crossed*

I asked Julie if she would like to write anything about getting to see my appointment firsthand, and she wrote the following for me to share with you all (and some pictures!):

While visiting Will and Dana in Aiken last weekend, I had the opportunity to join Dana for one of her quarterly check-ups at the Georgia Regents University Cystic Fibrosis (CF) Center in Augusta.

Before meeting Dana, I really did not know or understand much about Cystic Fibrosis. For those of you who know Dana, she does not let the disease prevent her from living life to the fullest or doing anything she aspires to do. Nor does she ever complain about any of her treatments, symptoms or talk a lot about her CF in general.

But another thing many of you know about Dana is that once you meet her, you love her. So learning more about CF and understanding Dana’s condition is very important to Brent (her brother-in law) and I.

So I was super excited to have the opportunity to join Dana for one of her appointments and learn more about CF. From the moment Dana arrived at her appointment, she was greeted with all smiles from several members of her care team. It was comforting to see she had such a dedicated team of medical professionals that each took time to see her and knew all about her particular case.

From the nurses, social worker, respiratory therapist to pulmonologist, I could see that each member played an important role in Dana’s treatment regimen and her continued progress. I also saw the concern and compassion each one had as they each listened to updates or changes Dana discussed with them. They each seemed genuinely concerned with how she was doing.

I was not surprised to see that Dana had an organized folder with all of her charts, progress and reports to keep tabs on how she is doing from visit to visit. Several of her team members referred to her as a “Star Patient” as she is so dedicated to her treatment regimen.

Dana is her own health care advocate and very determined to do whatever she can to help manage her disease.   She has set many goals to help with the prognosis of her CF- including individual fitness goals (running a  5k every month),  improving her Pulmonary Function Test  scores by using a vest and doing regular treatments  and even a fundraising goal of $10K to help advance treatments and research for CF.

Now to add to that list, Dr Forseen even managed to get Dana to commit she and her husband to running in the Augusta Half Marathon and 10K next year. And I know they will do it!
Dana is an inspiration to me and I am sure to many CF patients.  Her indomitable spirit and  positive outlook on life are contagious.

During her visit, Dana’s respiratory therapist stated that she’s doing so well that he expects she  will be around for a long, long time.;-)  Brent and I are counting on that as we look forward to making many, many more memories with Dana and Will through our life together. We love you Dana and hope you know what a bright spot you are in all of our lives.

Dr. Forseen listening to my lungs :)
Chatting with the Doc 
Me and Jules :)

Vest Suggestions

Hi all,

I need some feedback from your CFers out there!

I was just at the doctor and I'm looking at a new vest - The SmartVest.  Anyone out there used it or have thoughts about it versus others?

Thanks for your help!!

Wednesday, March 26, 2014

Cayston Video

Here we go!! I think this will work now.  I've been fighting with Blogger for a few days now trying to figure it out.

Hope you enjoy :)

Thursday, March 20, 2014

Gilead Pictures!

Hi all,

I am so excited that I received my pictures and video from the Gilead shoot for Cayston.  I was gone this past week visiting family (will share those fun adventures soon), so it was a great surprise to come home and find this special package!!!

Here are the pics:

Friday, March 7, 2014

So Long Sweets

I must be a glutton for punishment, because I am not only giving up Sour Patch Kids (again) for Lent, but I'm extending it to ALL SWEETS!!  Ahh - already regretting this decision :(  So, farewell to candy, cake, cookies, ice cream, and all the wonderful things I love.  Darn my sweet tooth.

I'm hoping these 40 days of no sweets will help me in my goal to eat smarter and be healthier.  So, I pigged out on sweets on Monday while we were traveling back home from West Palm Beach, FL.  *Side note - Will and I went down to the Honda Classic with some friends and had a blast getting pampered at the spa, relaxing by the pool and of course, watching some golf.  It was nice to see a South Carolina guy win :) *  Then, of course I had to celebrate Fat Tuesday and eat more of my delicious Sour Patch Kids!

Honda Classic - PGA National 
Me and the hubs :)
Found these delicious things at the West Palm Beach airport...and of course, I couldn't resist.
So, now I'm on day 3 and doing good.  The good news is I can help ease some of my sweet tooth cravings with fruit!  I've been buying a lot of fruit lately so I can snack on something healthier when I get the munchies.  And I've even been experimenting with smoothies and green drinks.  Surprisingly, I like them...can't get stuck looking at the color, cause it looks like something that came from a dirty diaper.

In other news, tomorrow starts Cayston again.  I swear my 4 weeks off go by way faster then my 4 weeks on.  I'll need to get readjusted to the 3 extra treatments in a day.  I think I can, I think I can!

Hope everyone has a great weekend!  We have some spring cleaning on our agenda.  Taking volunteers to help me declutter!  I'm a bit of a pack rat and Will doesn't save anything.  So its always an interesting time when we combine forces to clean house!

Will and I went on a run this evening and then rewarded ourselves with pizza and beer afterwards!  So much for the  healthy eating...haha!  

Thursday, March 6, 2014

Blog Recognition

You may recognize a new little icon to the right --->

CF stinks has been recognized as a Top 35 CF blog by the following site: 

I think its pretty cool :)  So, thanks for reading folks!!

Wednesday, March 5, 2014

And so it begins!

Fundraising is underway for CF Stinks!!  My team and I will be participating at the Augusta Great Strides walk on May 3rd!  AND, we already have some team sponsorships!!!

Thank you sooo much to:

Thank you to these wonderful folks for supporting CF Stinks again this year.

I've also received donations from friends and family members too!!

We are at $3,300 and still 2 months away!! Woohoo!!  THANK YOU ALL!!!

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...