The Joys of having CF

The Joys of having CF

Thursday, December 17, 2015

The Reality

For so long I think I've taken CF for granted. I've taken for granted the great health providers I've had. The great medical facilities I've gone to. But most of health. 
For as long as I can remember I've never had "serious" lung issues. The infections have always been able to be treated. My sinuses have always looked great. Never any polyps or build ups. I've pretty much had "perfect" CF health, in the eyes of the CF world...until the last 2 years. 
The last two years I'm not going to lie have been a little rough. Two years ago I switched from the pediatric CF team to the adult CF team and oh my what a difference. It's been a learning experience for sure. 
In the last two years my health has decreased. My lung function has gone from 100% to 89%. I've gone from never coughing stuff up, to now coughing up lots of stuff, sometimes even blood. I've gone from taking good deep breaths to being wore out after coughing. I've had a few hospitalizations(one of which left me with no appetite for food-a loss of 15+ pounds, which is still in affect today), and another which left me with nerve damage in my hand(thankfully that has gotten somewhat better). I've Doctor hopped to find a new doctor...which I'm still also doing. 
Overall the best word I can find for the last two years is roller coaster. 
Now currently, I am waiting to hear back from a different CF center in the state I live(the center I went to from 3 months old to 10 years old). I've been doing tons of research to find answers, to find the right care for me. I've taken it in my own hands. 
At my last appointment I was approved for a new VEST which is great: 
I asked the doctor if part of my problem is my old VEST is 10+ years old and not a hill rom, to which she said "prossibly". So step one-I got my new vest. 
Step two-I had a visit with an ENT. Which also unwrapped a small piece of the puzzle: I have a huge polyp in my left side so that could be why I have a constant runny nose and stuffy head. The doctors solution was immediate surgery. I know I need the surgery. I am not denying that but I am denying her being my doctor. 
My prayer is that I hear back from this other CF center soon so I can get on the right track. 
Now I say all this to say; don't worry this post isn't to scare anyone. It's to make aware that sometimes YOU have to take matters into your own hands. But it is also to state don't take your health for granted. 
Going into 2016 I plan on it being a fantastic year to remember. Even though I have to have my first surgery ever(besides the immense amounts of PICC lines). It's something that eventually would be inevitable. I'm very blessed that I've gotten to wait 21 years. 
Even though life seems crazy now, I WILL come out stronger. I will stand up for my health and fight to make sure I keep myself healthy. I will do whatever and go wherever to find the answers. I will be an advocate for myself. 
Somedays I stop and just look back on this year and think oh my gosh how did I make it through, and the only answer  I have is my faith. I know deep down that God has a plan. Only he knows what it is, and oh, some days I wish I new what it was but I truly feel he has big plans in store. 
As of today this is my current reality. A reality I kinda always wanted to blur out, but that's selfish of me. Compared to some people with CF I have it easy. Shame on me to complain. 
Today I woke up and was able to breathe.
 For that, that made today great, and as long as I can keep doing those two things, this reality...will turn into amazing moments that someday years from now I'll look back on and say, "I'm so thankful I went through all that to make me who I am today". 
This illness will not beat me...I am a fighter...and my story, is just starting.....

~God Bless 


  1. awesome Paige! I'm trying to convince Chrystal to start a blog. So I know how this takes a lot of guts for you. God bless your journey. I'm over half done with a book I recently bought that is a compilation of 12 months of blogging about CF. Roller Coaster is the perfect description. But getting the word out is so vital. Even though my spouse fights this battle effectively, every day, I realize so much of the disease never lands on my radar. Spouses, parents, siblings, in-laws and class-mates all can learn greatly from your first hand info. We need to be reminded of your inner battles, fears and triumphs. You're a survivor, a winner. The world needs to know.

  2. Thanks Lucas. I always try to write what's going on, in the moment. I love talking about CF and any way I can help someone I'll do it. That's why i started the blog. I think it'd be wonderful if Chrystal started a blog. I'm sure there'd be so much to learn from her. She has a wonderful story.
    ~God Bless

  3. Wishing you a healthy 2016, Paige!!