The Joys of having CF

The Joys of having CF

Tuesday, May 19, 2015

The long wait

After being told I should start Cayston back in November or December I finally received it. It only took 6 months for insurance approval, and many calls to the pharmacy etc...but those with CF will understand the urgency to get it. Tonight I took my first dose and my prayers are for increased lung infection and less chest congestion. So when I'm done with 28 days of Cayston I hope for at least some improvement, but I am very thankful to have been able to receive it. 

Wish me luck!! 
~God Bless 

Wednesday, May 13, 2015

Appointment Update

Yesterday(Tuesday) I had my 3 annual month check up. I had a chest Cat scan first to check on a spot in my lungs that's been there for years but won't go away. 
Going into this appointment I was a little nervous because with all the humidity we've been having lately my lungs have not been happy. It's been a little more difficult to take a deep breathe etc...
So I had my appointment, my PFT's were 91%, good but not great, but the doctor isn't concerned. Me on the other hand, I'm not to thrilled with the numbers because this time last year they were 99%. It sort of shows that my CF is "progressing" so to speak, but my numbers are still good considering all odds. So my goal this summer is to exercise more and get my numbers up. 
The results from my CT scan weren't in yet but good news is when my doctor zoomed in and looked and the spot is actually not in my lungs, so she's thinking maybe it's some kind of scarring. Hopefully I hear the results in the next few days. 
That was my exciting day, my next appointment is in August, praying for better numbers. 
I will hopefully write soon, I may have a few fun new topics to post about soon, so stick around and keep checking back. :)
Hope everyone is having a wonderful week, and remember keep spreading Awarness for CF this month. 
~God Bless 

Saturday, May 2, 2015

Great Turnout

Today was our local CF walk. The walk in our area has been going on for over 20 years now. We had the biggest turnout that I can ever remember and we raised almost $17,000. For the size of our walk that is incredible. It made my heart so happy to see everyone who came out to walk and show their support to help find a cure. With all the money raised it will help add tomorrow's everyday, and will one day make CF stand for cure found. 
Here is a picture of all the people who walked today and raised money for a cure. 
I hope everyone has a great weekend and if you haven't had your CF walk yet, I hope there's great turnout. 

~God Bless 

Friday, May 1, 2015

Reflection, Hope, & Celebration

Today is the start of Cystic Fibrosis Awarness. It is the month where Facebook turns "purple", but it's also a time where I reflect on my life, and where I am, and where my future is going. I reflect on my goals and dreams for the future. It reminds me to not take each day for granted and live it to the fullest. 
Also, it reminds me of those who have lost their battle with CF. Those who fought a tough fight. 
May is a month of reflection, but also a month of hope, and celebration. It's a month of hope because as we raise Awarness we also raise money to help find a cure, so hopefully one day there will be a cure, and it's a month of celebration because even though people have lost their battle with CF, we can also celebrate the amazing life they lived while they were here.
My hope and prayer everyday is that one day CF will stand for Cure Found, and I don't have a doubt in my mind that that day will come...and soon. 
So this month as we celebrate CF Awarness if there's one final thought I can leave everyone with is this: as CFers we know that sometimes we don't know how strong we are until being strong is the only choice we have. But we also know how to celebrate life, and life each day to the fullest, because tomorrow's never promised. 

I hope everyone has great CF walks if you haven't had yours yet. My local one is tomorrow so I will update after that. 
~God Bless