Monday, March 24, 2008


While napping today I had a nightmare. I hate nightmares more than anything. They usually affect me for hours or days after, and prevent me from sleeping.

My nightmares are not normal nightmares. I am reliving horrible parts in my life - usually high school - and it's not pretty. I wake up shaking or crying and I just can't stop thinking about it.

Today I was dreaming, and the dream started out where a strange person was putting notes under the front door, and by the time I would get to the door the person would be gone. I had to go driving around to try and find this person. It was awful - but the worst part was I was driving around and had to lie about things that happened in high school - someone was making it my fault, and I woke up thinking it was my fault, and that is still bothering me.

And now I've found a YouTube video that is so sad. This girl lost her battle with CF at 19... in September 2007. And then I am reminded how precious my life is - I'm almost 22, and sometimes I have no idea how I've made it this far. The PTSD alone still gives me problems, what the hell am I still doing here with my CF???

And THIS is hard to watch... I hate that shot of the cup... But that's just me.
I have that same vest. And a lung transplant isn't a cure - it's a treatment. Trading one problem for another. Eventually we will die.

And thinking about that makes my nightmare seem insignificant.

1 comment:

BreathinSteven said...

Hey Lady...

I'm sorry about your nightmare -- I hope it doesn't keep you up to much... And the video about Sharon is, as all of them are, heartbreaking... It's very obvious she was very loved... And the song they used is one of my favorite...

I wasn't sure where to take your comment about lung transplant -- you're absolutely right, it's trading diseases -- and you don't even lose all of the cystic fibrosis... But most often -- it's a "disease" that's much more manageable than end-stage CF... And if you're lucky (and most recipients are), after living for so long with crappy lungs, it's a totally, freakin' amazing experience... I hope you haven't written it off...

I managed to life almost 40 years with my crappy CF lungs -- my lung capacity was around 10% when I was preparing to be listed, three years before my transplant... April 8th will be my 8th anniversary of the day I got my new lungs... I still think about how amazing this feels every single day.

I've been lucky enough to have learned who my donor was -- a precious 17-year-old girl from Iowa named Kari... She was healthy as a horse -- a star middle-hitter on her volleyball team -- in the month before she passed, she told her family twice how strongly she felt about organ donation... She died out of the blue of a brain hemorrhage -- she saved my life -- she's given me a life I've never, ever known...

I have a little of my story and a tribute to her at I also blog about organ donation at And, I crosspost all of my own Revive Hope posts on my MySpace page...

You take care... Thank you for posting the videos... I'm going to drift through some of your other postings... I hope you're doing OK -- I hope you're hanging in there... And yup -- eventually we will die... And for us CFers, whether we choose transplant or not, that almost always comes sooner... But looking briefly through some of your posts -- it seems that you treasure the life you have... That's more than some people who live to 90 experience...



Steve Ferkau
Chicago, IL

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