Friday, October 28, 2011

Forever my Lil Star!

Again I write with a broken heart... I received some very shocking news last Sat the 22nd. My Lil Cys Astra received her wings. She didn't lose her battle to CF she simply crossed that CF finish line. To me fighting every day and overcoming challenges doesn't qualify you as losing any battle. So I prefer saying she crossed that CF finish line. You think it would get easier for me but it actually just gets harder and harder losing my friends to CF. However, the bond we share is greater than any thing I can describe, I wouldn't change it for the world. I believe it's better to love and lost than not love at all, my Cysters mean the world to me. These hard times give me more drive and fight to kick CFs A**!! Actually CF doesn't stand a chance, you don't mess with my friends!!!

I have no words really, it's so hard to wrap my head around this. I just saw her on the 10th and she looked great and was doing awesome. She had just posted pictures from a Halloween party to face book last week, she was the cutest mad hatter EVER!! She looked great and was loving life. In fact Fri the 21st she was out with her friends til 2:30 am again enjoying life, because that is what she did always. To lose someone so unexpectedly is so shocking and so unreal. Click her to read her obituary

I have known Astra since she was 4, she was my Lil Cys. We hung out and I'd babysit her in the good ol days when we could hang out. Then the dreaded cross infection came into play and we saw each other less but our bond grew even closer through hospital stays and different procedures, good times and bad. I'd go to her drill performances and cheer her on as she danced her lil heart out. Her parents helped me celebrate my 30th bday, we were lifelong friends Cysters!

I know she is breathing easy now and for that I am grateful! She leaves behind quite the Legacy. The last couple days there has been so much love and support from everyone. She touched so many lives in her short 20 years than most people can in a lifetime. She was a gift to all who knew her, I am so lucky to have been her Big Cys.

Knowing Astra and Tiff are up there together makes me smile. I can only imagine the trouble they are getting into. I am honored that Astra is also wearing her Live,Love, Breathe necklace for all eternity, that too made me smile from ear to ear!

I love you Astra SO much, you  forever will be my Lil star! Breathe easy sweet Lil Cys. Know that you lived and loved beyond your years and now you can Breathe! I know you are dancing up there through the clouds!
Xo Infinity!!
Your Big Cys

Below is a pic that my friend and a CF mom Kristal Kennedy did for Astra 

Wednesday, October 19, 2011

Meet Bradley Crown

Find out what journalist and CF patient Bradley Crown uncovers on campus in his illustrated short, Truth or Dare?

Bradley Crown is an aspiring journalist on a mission. He just needs to uncover a big story in order to join the staff of the school’s paper. One night on campus he finds his first break – or maybe it finds him. Bradley is set on getting to the bottom of the mystery, but he also has to manage his CF treatments. Finding the right balance is not always easy. Will Bradley give in to the pressure or will he take control and face his fears?

Visit to read Bradley’s story and find out how he dares to find the truth, or click here.

Tuesday, October 4, 2011

7 year itch

Sad, Sad, Day last Wed I went to flush my Thipple like I do every month. My Thipple for those of you that don't know is my portacath my permanent IV in my chest, hence the name Thipple for third nipple ;)

Well it wouldn't flush.... Surprisingly I was calm. So I pulled the needle and got out another kit and did all the steps over again and inserted another needle, still nothing. Surprisingly still calm too.

So I headed up to the hospital and I figured it just needed some TPA which is what can clear any clots but I have never done this before. So the sweet nurse took out my needle and reinserted another one she missed and went into the tissue... ok not calm any more I had some tears welling up. She insisted it was fine and this sometimes happens so she inserted another needle yes this is poke number 4 but who's counting. Finally she was in but so was I two pokes ago but she was just making sure which I totally understood so she got some saline to go through it and it stung and was VERY uncomfortable. So she called in some back up, they all decided I needed to go to IR to get some pictures and run some dye through it to see what the problem may be because it could be leaking cause it's old. (sigh) Okay more tears welled up, I just kept looking at the ceiling heaven forbid one fall down my cheek ;)

Let me also remind you that I treat my port like it as is fragile as spun glass. I flush it every month I NEVER let them draw blood from it and I always make everyone glove up if they are going to be doing anything that involves my Thipple.

So I headed to IR and right away there were some concerns... gulp! Apparently it moved somehow and instead of the line going straight across my chest it is all wavy and the tip of it is stuck in the vein against the wall of it or in another superficial vein not allowing anything in or out. It's a 1 in a billion chance this can happen but I know 2 others that this has happened too, so I am thinking that figures are a bit off ;) or all 3 of us need to head to Vegas with those odds ;)

So I am sad to report my Thipple is no longer working. RIP!!! I have had it for almost 7 years they say that's a long time and I was hoping for 10 but maybe Thipple #2 can go 10, it's always good to have a goal. I have a clinic visit on the 10th and if I have to be admitted then we will remove and replace it then. If I don't go in then well not sure maybe just remove it for now or wait I guess we will have to discuss all that on the 10th.

The sweet nurse from the infusion clinic called me the next day to see how I was, she really was SO great. I will have to take them cookies or something on the 10th. So thats the story of my Thipple and the 7 year itch ;)

I hope everyone has a fabulous week!


Here's a pic of me and My Thipple