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Thursday, May 31, 2012


Hello World!

The boat is in the water, summer is here!!!! For me anyway, haha.

Hope everyone had a great Memorial Day Weekend. We had great weather. Perfect for the lake. My brothers came up to the lake house and it was nice. The 5 of us just hung out and played games and ate great food. It was nice to have just the 5 of us, its been a while since thats happend.

On the health front I'm back in the hospital. BOOOOO!! But it was much needed. I was having lots of trouble breathing. I'm day 3 of IVs and I'm already starting to feel better. So thats great. Hopefully the 2 weeks goes by fast.

I go back to Cleveland in a few weeks for Transplant check up. As much as I hate the poking and proding of these Transplant trips I do like going. Driving to Cleveland and back is the only vacation I've had in a long time! The drive is nice too, very easy. Well I don't drive, I'm just the passenger haha. But Vermont and Upstate NY and the brief trip through Penn is lovely. One of these drives we might even detour to Niagra Falls. I've never been! That would be awesome.

Breathe Easy

Sunday, May 20, 2012

2 Years of Waiting

Hello World!

Today is 2 years. 2 years of waiting for my transplant. It has been a long 2 years.

When I examine my life now and compare it to this time last year or even 2 years ago it is amazing how much worse I am health wise. This is NOT how I pictured my life at 26.

I'm 26, I should be a few years into a career, in some kind of relationship or at least attempting relationships, living on my own, having my own life. I'm not close to any of those things.

I haven't been able to work since 2008. I haven't even had a quality relationship in years. I still live with and rely 100% on my parents. This is not how things were suppose to be.

I hate to bitch and moan because things could be worse. And I know that. But when they say life's not fair I didn't think it would be this unfair at 26. Its not just being unfair to me but to my parents as well.

I hate cystic fibrosis and I fight it every day. And its hard. But my parents hate it just as much and fight it every day too. Its just as hard for them but in a different way. I always hate when I slip up and say "You don't know what its like to have CF, this isn't easy." Because I also don't know what its like to watch my kid fight this disease and ultimately not be able to do anything for them. They can provide me support emotionally and financially, and they do. They can be there to help me with therapies and medications, and they do. But in the end they can't make CF go away. They can't make CF cut me a break on days I feel like the weight of the world is on my chest. I can't imagine what that's like.

I want and need this transplant not only for myself but for them. They deserve it just as much as I do.

So while this isn't how my parents or I pictured my life at 26 we are taking the good with the bad and forging ahead. There is nothing else we can do. Certainly not going to stop now that we've come this far.

Hopefully in a year, I can look back on this post and say "Wow, You've come along way Jess"

So while the light at the end of the tunnel seems dimmer than ever, I can at least still see the light.

"Win" - Brian McKnight

Breathe Easy

Wednesday, May 9, 2012

Kidney Surgery

Hello World!

I know its been a while. April was NOT my month.

I went out to Cleveland for Transplant check up at the end of March. A week after coming home, HOSPITAL! I managed to negotiate some freedom for Easter and then days later HOSPITAL!

I also had surgery scheduled to remove a large kidney stone. I went in house a few days early to get some antibiotics running through to help with recovery. Surgery was scheduled for a Tuesday, the Sunday before I was hit with a serious head cold. Sore throat, stuffed nose, coughing galore! IT WAS AWFUL!!! I felt so bad I thought they were going to have to move the surgery. Thankfully they didn't.

So Tuesday came. They used an epidural and sedation for the surgery because I couldn't be put under general anesthesia without the most likely outcome of a ventilator. Once they had me sliced open they realized the stone was bigger than they thought. They had to break it up into 12 pieces. Like 12 pea size pieces. It was a beaut of a stone! I wanted to keep it but they wouldn't let me! Boooo!!!

Overall the surgery went well. Wasn't my favorite thing to have to go through but glad its over. Hopefully no more stones pop up. I do not want to do this again!

 My Drain Tubing
The hole once they pulled the drain tube
I got to wear this snazzy bag for a few days to collect my kidney juice
My first post surgery meal - A Cherry Popsicle
Mama hung out with me overnight

Breathe Easy