Wednesday 30 May 2012

The background

I have only 4 nights left in Nova Scotia. If I sit back and actually think about what is happening I get overrun with emotion. This has been 4 years in the making. 

I am getting new lungs!

This is insane.  This is truly insane. 

Bye bye crusty lungs. You and I have grown apart. It's time to break up. It's not you, it's me....ya, lets go with that.

I was born with a chronic illness called Cystic Fibrosis. For those of you unfamiliar with CF, feel free to check out Cystic Fibrosis Canada's website: http://www.cysticfibrosis.ca/en/index.php

When I was a little girl I remember doing aerosols, mom and dad giving me physio and mixing my enzymes in apple sauce. I was lucky, I had a little friend with CF named Laura, so I wasn't the only strange girl sucking back apple sauce before my lunch. As I got older I was able to do aerosols on my own, do my own physio and I ditched the apple sauce; I can take a lot of pills at one time. Does that make me cool? Absolutely.

High school was a breeze. I played a lot of sports and, aside from a couple of hospitalizations, CF stayed in the background - where it belonged. 

CF must have felt left out, like it wasn't getting enough attention. "Helllooooo, remember me? I'm CF. Aren't we like, best friends??!! In my early 20's it starts acting up. However, I think it was just lonely, because along comes a friend...Cystic Fibrosis Related Diabetes (CFRD). Ugh. Anything but diabetes. Gross. Controlling it with diet turned into controlling it with pills which turned into controlling it with tiny, annoying, painful needles full of insulin. 

Someone wanna pass along a message? "Go away CFRD, although you are crushing on me, you are not my type!"

2008 I got very sick. Hospital sick. ICU kind of sick. I will go in to detail in another post, but for now we'll leave it at - I was the kind of sick where your doctor advises you that you need a double-lung transplant to save your life (because you almost died and your lung disease has taken over your body) and you sit there staring at him/her wondering if this is it; did CF win? However, because I am super human, my health stabilized. 

For the last 4 years I've been monitored by the transplant team. I'm really good at pretending everything is okay and saying "I'm gooood, everything's fine". I really hate complainers and I can't stand people who look for attention. So, that's the last thing I ever wanted to be. I also have some sort of preoccupation with pretending I'm normal (go ahead - laugh). Who wants to be different? 

There it goes again. CF starts whining and comes screaming in like a banshee - Ya, hi, me again. I feel like an ignored housewife. I have needs too. I have neeeeds. This last year I've really felt it put on a squeeze. It couldn't be ignored any longer. My CF specialist felt it was time for new lungs and I agreed. (I will write more later about why it's time.) 

I flew to Toronto in March with my friend Lindsay for a week-long assessment. Four weeks later I received the call. Not to be confused with the call I'll receive from TGH saying they have an actual set of lungs on ice for me.

"We agreed you are a suitable candidate for transplant and now is the time for you to be listed".

I was rocking a pretty crazy cocktail of emotions. What???? For real???? It's my time???? Shut it! No......Yes!!!!

I move June 3rd. 

I'll be listed June 5th.

June 5th starts the wait for my new life. My second chance at life.

Live, Laugh, Lungs allows me to share my story and chronicle my adventures.

Live with me, laugh with me and follow along on my search for lung-term happiness.


16 comments:

  1. I am so glad that you are doing all of this so that we can follow along down here in NS where you left all of your peps. It is much easier to explain everything when writing it, then saying it outloud. You are going to do awesome and I will be counting the days until you get back here so we can dance all night long at a New Germany dance. Love u lots. Red

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  2. Laura Beck Patton1 June 2012 at 22:18

    Well Jess, you've made the ice queen (Eric's loving nick name for me) tear up. Not cry, mind you, as that requires super human effort, but tearing up is good. I will be reading the blogs faithfully, and I will think of you every time I rinse my sinuses. Wait, I mean, I will think of you every time a bird flaps it's wings (or something equally uplifting)! CF doesn't stand a chance against you! Love, Laura ("Cyster")

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    1. Ah Laura...it's exciting for me to think of you rinsing and thinking of me ;)
      CF doesn't stand a chance against either one of us!!!

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  3. You are such an inspiration, Jessica! I wish you all the happiness, luck and love as you move to Toronto to meet your new lungs- I know you will triumph over CF :) Will be thinking of you!

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  4. Hi Jessica,
    I'm following your blog and want to wish you all the best. Say Hi to Brad for me. Joanne and I will be visiting Sara, in Borden, in early Augest and we will stop by for a quick visit on our way back to Quebec. Maby we can have lunch or something, or even better; maby you'll be recovering from your operation and we can celebrate that with you.

    Love
    Uncle David at davidcarver@hotmail.com

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  5. Thanks David! It will be so great to see you and Joanne. Lunch sounds great...and fingers crossed for a celebration!!!

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  6. Hi Jessica;

    Just found your blog today, what a girl, I was smiling when reading the blogs and agree that CF does not stand a chance against the spunky Nova Scotia woman that you have become. Thanks for finding a way so that we can follow your journey.

    Linda Demond

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    1. Thanks Linda! It's quite crazy here, so glad you can follow along! xoxo

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  7. So glad I found your blog today! You are truly inspirational. We will be following you in your journey with lots of love. Vicki and Olivia oxo

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    1. Thanks guys! Happy your reading. Can't wait to hang out again :)

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  8. hi jessica shay here miss you so much school is soon over so exiced love you so so so much you are the most special girl in the family you are so lucky to have a strong family who care about you so much i think about you all the time i wirte about you in my journal at school my teacher says good luck i toke a picter that was in the paper and tok it to school peple aks who is that? i said jessica who has cf they said ok wow carvers are strong just as strong as you thats why you are called JESSICA CARVER because you are strong as all of us

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    1. Shay! I just today saw your comment. You are such a little sweetheart. I love you lots and lots too. Don't forget how special you are, ok? Kenna too - you girls are really lucky to have each other. There's nothing like sisters!
      xoxoxo

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  9. Hi I found ur blot today and will be following along from the uk. I also have cf and fear I will be in situation in the future. Thinking of u niki. X

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    1. Hi Niki, glad you found me.

      I always found talking to others with CF so helpful. I know CF can be scary, but remember, we've dealt with it our entire lives and we can handle a lot. Plus I know the doctors in the UK are really great

      I'm not going to pretend this is all rainbows and butterflies, but it sure is an adventure!

      Message me anytime you want to talk,

      Jess

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