boo.halloween weekend.

What do you get when you cross a vampire with a snowman?

wait for it.................

A FROST BITE

baahahah thanks dad.

Halloween is my favourite time of year.

This is me last year. I went to a halloween wedding. This year I get to dance with new lungs..and go without the whole picc line in my arm. yay to this halloween!

This is me two years ago as raggedy ann.

This is me three years ago as a 1920's flapper (my favourite era).

stay tuned for me this year....i'm going as cinderella! Two of my other girlfriends and I are all dressing up as the disney princesses. We've got a Jasimine, a Belle, and a Cinderella. Two of my favourite things...halloween, AND disney characters...am I an 8 year old in a 23 year old's body disgused as an 80 year old? perhaps. haha

I have this 1940's big old vintage blue ballgown, which is the perfect cinderella dress. I got a wig, and some ribbon, some gloves, and it's set. The only kicker...no glass slippers...those are hard to come by...I still have trouble walking anyways, (but i'm improving on the treadmill at physio each week, and they say I only have to keep coming for a few more weeks!) so its best I just wear comfortable shoes, no one can see my shoes under the gown anyways.

On the lung front, things are going good. I went to the grocery store the other night, with the wind and rain HOWLING (getting ready for halloween probably...) and I was able to run across the parking lot to get out of the rain...as I got inside....no breath was missing, not a beat. It was wonderful. Thank you donor. Thank you science.

wild in the city

I blew a 2.01 liters on my home spirometer this morning! holy holy holy a new record. 2 liters. I have 2 liters of air to fill inside this chest of mine. 2 liters of air to sing in the shower with.

CF fashion show after shock party tonight.
Girls Gone Wild.
In the big city.

low globe.

shoot....today is a not a good day.
I am so exhausted. I think there is a permanent grove of my butt imprint on the couch. I've taken it hostage for the day.
My coordinator called me and told me my hemoglobin is back down to 79...ugh. I feel drugged as if someone has shot me up with gravol.

drum roll please....

Last friday I got the results back from my bronchscopy..............

NOOOO REJECTION!

these lungs must like me.

woo.

electric shock therapy...all the cool kids are doing it

On Thursday I spent the afternoon in a torture chamber! I went for a neurology appt. for my weird leg condition....little did I know it was a disguise for a torture chamber. Halloween came early.
I have never been through so much pain in my life. I had to tell them "hey I've just had a double lung transplant and that did not even hurt as much as this, you HAVE to stop"

First they started off with electric shocks, well those were not too bad...I mean I've had my chest cracked open, so a few shocks...yes they hurt...and yes I jumped with every single shock, I was afraid I was going to kick the woman! but I grinned my teeth and bared that part of the test for two hours....next came in the big guns, the big cahoona doctor and he said 'yes I needed to do the next part of the test which is "uncomfortable"'...they stuck needles and twisted them in to my muscles and nerves....I have been to hell and back and I don't rememebr having tears streaming down my face from any pain in the last few months....yet here I was being 'tortured' and I had the whole water works going. I was even hyperventilating I was in so much pain. And the outcome of the day...."it's not permanent nerve damage, there seems to be no new nerve damage. It looks like old nerve damage and is repairing itself, so not to worry, it seems just like ICU neuropathy "......are you kidding me? sigh....so much pain, for something my transplant doctor already figured it was, since I spent so long in ICU...but I guess they had to determine whether it was something more serious. Thankfully it is not, and it's begun to heal itself. This really is such a long journey.

Things I appreciated doing since transplant this weekend
- squatting while using public washrooms and not being out of breath (i'm a total germ freak and using the public washrooms pre tx was not cool)
- packing my suitcase for a weekend away and using only ONE bag- goodbye medicines, machines and IV poles
- carrying bags from the car to the cottage walking up the slight incline driveway and not getting out of breath

Gobble Gobble

Thanksgiving has taken on a whole new term for me this year. I am so thankful that I am here, breathing, living, laughing, enjoying. Thank you. Thank you is not even enough of a word. Thank you donor. I'm so sorry your family has to spend this holiday with out you....but thank you for allowing my family to spend it with me.

Things I am thankful for:
My cottage
hilly sand dunes (wouldn't have put that one last year!)
my family
my family
my family
Canada and it's health care system
Dr. Shaf Keshavjee, Head lung transplant surgeon (he did my new pair!)
flea markets (I got to the famous one this weekend by the cott)
vintage finds
Ireland and all it's beauty (next summer swin!)
hot apple cider
cold weather....(even though my sternum now screams in agony with it...but it means I am here for another season...it also means Barbados vacation can't be too far off! right mom? dad? haha)
my friends
my friends
my friends you are beautiful.

Take a moment close your eyes....and breathe down in to the bottom of your lungs because you can (and I can too!)
This thanksgiving I made it up to my cottage for the first time in over a year! I forgot how cute it was. I carried my cat down to the beach, because I could...I climbed the sand dunes...because I could....I carried pillows and cushions to outdoor seats, because I could. I kept waiting, and waiting to feel that winded breathlessness that used to come when I exerted myself on the exact same activities last year...but it never came. It never came. It was so weird to be able to do all those things....I kept walking down to the beach on the path and waiting for the breathlessness to come...thinking, is this what everyone else has been doing? but it's so easy. too easy? Ah Breathing...you still marvel me.

Statistics for a second chance

Last year they did 98 lung transplants. This year so far they have done 62 lung transplants. Their goal this year was to do 120 lung transplants. It's October 1st today...and they're just half way to their goal. There are so many people who are waiting for new lungs, and so many people dying all the time, with organs just going to waste while someone else just waits. Gah it's so frustrating that not many people know about organ donation, or give it much thought until it's staring at them in the face, looking down the ol' gun barrel. That every 3 days someone dies waiting for an organ. Check out this website recycleme.org
This has not been a good year to get listed for new lungs it seems. They only did 6 lung transplants in July when I received mine. I am so grateful every day when I hear that number, I'm lucky I got my pair.
It's also a little scary because so far out of those 62 lung transplants that have been done...2 people have died either in surgery or shortly after....YIKES. Thank gosh I found out that number AFTER I've had the surgery...after I've been to hell and back...

There is one family I met in clinic, who's son is around 26, and received a liver transplant. They had five months to digest the fact that he needed a new liver. They had never even given any thought to organ donation until it was right in their back yard. Which is the same with so many people I think. Until you know someone, love someone, befriend someone who needs a second chance....do you really give it a second thought? Do you really think about your own death and what you'll do with your organs after wards? The Star has a great idea in getting people involved. If you don't know someone personally who is needing an organ donation, which is most of the population, you can certainly fall in "like" with them through reading about them. The Star started featuring and promoting people waiting for organ donation and their stories. If people see that it's real people waiting for new organs, if they hear their story, if they see how they live...they fall in 'like' with them. They'll register their forms, or tell their loved ones they want to be organ donors.

Only 4% of Torontonians have registered to become organ donors. Scary. I don't think it's because only 4% are willing to become someone's hero. I think it's because they just have not taken the time to fill out the form. How many people in this city?.... And 4% are registered.

Wouldn't it be awesome if you could be someone's hero? If you could rock someone's world? Save their life? Stop a mother's tears? Hush a husbands fears? Be daddy's little girl again? Listen to a brothers dreams once more? See your child grow beyond? Hear a friends laughter twice over? Wouldn't it be crazy wild.... to save that someone's life. Wouldn't it be crazy wild to let them live again.

My donor is my idol, my rockstar, my world, my victor, my champion, my everything. They let me live again. Let me breathe. Let me begin to imagine a normal life. Let me even fathom doing things that every 23 year old girl doesn't even think twice about. Concerts, dancing, blind dates, movies, dinners, friends, laughter,walking, swimming, cottaging, bonfires. Donor you're my hero. www.giftoflife.on.ca