My Double Lung Transplant

Wednesday, May 26, 2010


I feel lost
Unsure of where to go
Need to crawl out of this hole that i've found myself in
Nothing satisfies me
Need to do something
Need to find a passion
Have no passion or motivation
And i hate feeling this way
I feel lost
Unsure of where to go

I feel like I live in a circle. I find myself in this mood/frame of mind often since my transplant - well, ever since I have nothing to do. I need to create something, but i can't find the motivation. I know a lot of why i feel this way is med induced, which sucks. I want to know if anyone else feels this way post -tx or if it's just me who's fucked in the head about where to go in life.

Maybe for the time being this is where i'm supposed to be? but that doesn't make it any easier, less frustrating. I do the same thing day in and day out: wake up, get ready for the day, check emails, visit Finn, come home, clean....It's boring.

I've thought of writing a book, been encouraged by countless ppl to publish my blog, and I really want to, but I don't know how to go about it. Can I even do it? Am I brave enough?

I hate thinking. It must be stopped.

I ran over a squirrel today. I was on my way to Timmie's when it ran infront of the car and went 'thump, crunch'. I felt so horrible that i stopped in the middle of the road and got out and sat next to the poor creature to make sure it wasn't suffering, b/c if it was, i was gonna pick it up and take it to a vet. Seriously. i felt horrible.

Don't get me wrong, I don't mind having all this free time on my hands, I wish i had something to be motivated/passionate about. And I do, i just don't know how to execute it other than through blogging. I hate feeling this way.

This probably makes no sense. And i'm sorry.

Signing out with no pants on,


Friday, May 21, 2010

May 2-4

Finnegan Vernon Perry






I am going up to Jess's trailer up in Port Elgin - I havent been since 2006. So stoked! There are a ton of people going which just makes it more special.

Typical me, I just packed now at midnight, had my shower at 11pm (after a FANTASTIC season finale of Greys! Who didn't wanna pull their pants down it was so intense?!). And i packed all my meds. Probably stuffed too many clothes into my ugly duffle bag, and also a bright flowery blanket. Weeeeeeeeeee! So excited! Mum's dropping me off at Jess's at 9:30am and I hope we stop at Timmie's as an XL English Breakfast tea is in order for the journey up to cottage country. Woo hoo!

It was gorgeous out today - about 27*C. My sis and her bf bought a chocolate lab on Friday whom they named Finnegan (pictured above), and I have been appointed as babysitter in the afternoon. I go over to their place at 11:30 and let little Finn out and feed him lunch, pee him, and play with him until the little creature tires out. He's adorable - but he bites, and he bit my crotch the other day. Not cool. He also likes to try to eat stones and enjoys barking at the rake in their backyard. So this is what I will be doing every day until i can find a job. I don't mind doing this in the least! It's so fun! I love my little chocolate nephew!

As a result of the warm weather, I have my window wide open and am sleeping with my blind up and curtains open. I love nothing more than sleeping with my window wide open in the summer time, letting the warm summer air in, and I love being able to wake up as the sun does too.

Life is fab. (and my spiro - which i just did - was 1.98L tonight, which is 98% total lung function for me)


Tuesday, May 18, 2010

A Sign...

...from Megs.

I got one today, and realized I've been getting them for the last dew days.

On Saturday - before i found out she had died - I was in the backyard and out of nowhere 4 monarch butterflies appeared and fluttered all around me. I knew then that she had passed. Her angels had come and took her away so she'd not be alone on her journey to the afterworld.

Later that day I was at a nursery with my mum and out of nowhere a single monarch showed up and flew up, up and disappeared into nothing.

Then today I was on a drive looking for new walking trails when out of nowhere a single monarch began fluttering around me. Persistantly. It just hung out and then I realized, "it's Meghann...letting me know she's still here." As soon as I made the connection, it flew away.

And then I began crying. Today was the first time I shed a single tear for her because i've just been in shock and denial.

I miss seeing her sign in on MSN, or facebook chat, and I miss our random text messages. I miss our Skype and webcam chats too.

I never thought megs had the strength to die. But i guess I was wrong. Because she did. She's moved onto bigger and better things. We haven't lost you, you've merely taken on a different form. You are free now.

Fly free my wonderful Megs. And breathe easy. I will always keep cheesie puffs on hand and think of you - and then get my fat ass in gear because of it.

Here's my fave pic of Megs. It's pre-tx, but it encapsulates everything that she is and was. I don't want to post any post-tx pics because she wasn't happy with what the pred had done to her. So this is how I will remember my Megs, a silly, compassionate, naughty, feisty, complainer, lol.
Now, my friend, you are only in my memory...

"Let me go gracefully..."

P.S Megs, please take care of Casey up in Heaven. You knew how much he meant to me, and you're probably wondering why he's up there. Give him lots of hugs for me because he likes to cuddle and he won't go to sleep without them. I'm sending hugs to Neeko for you - i know you're missing him as he's missing his Mama.

This effing sucks.



From this... To this...

Whadya think? Don't know why the second pic is so effing small...

Sunday, May 16, 2010

Quel Horreur

Megs died.

She died yesterday morning at 11:30am. She had RSV and it damaged her lungs, and she had a buildup of CO2 which hurt her other organs. She had been on the vent for over 2 weeks.

I'm at a complete loss for words. I don't even know what to say. I havent even cried because i don't think i can. I'm in shock and i'm incredibly angry. Megs was one of my best friends and we told each other everything. We got our transplants a month apart and we recovered together like she said she would. I will miss text msging back and forth, talking about asshole boys, and i will treasure the night when i was a few weeks post tx where we chatted on webcam for hours and compared our tx scars and battle wounds. Oh how we laughed. We laughed until we cried. We laughed until it hurt. We laughed because we could.

I miss Megs already.

Onto other things...

I gardened with my mum yesterday and it was fab. Last year i couldn't garden b/c i couldn't bend over and breathe...I'd get out of breath from all the digging, but this year i wasn't out of breath in the least. The only thing i wish i did was stretch before hand, b/c holy fuck people, my crotch feels like it's been pulled in 4 different directions. Who knew squatting was so dangerous!

As a result I woke up feeling sore today. Back hurt, legs unfunctioning. To add to this, was the scary fact that i had a raging headache, was dizzy and had a temp! Luckily, my temp has gone down, headache as fucked off, and i'm no longer dizzy.

Lastnight on a whim i decided to colour my hair bright red. So far, i'm likin' it!

Sorry this isn't more interesting. I just don't know what to write.

Thursday, May 13, 2010

You never know...

They say when you reach transplant you trade one disease for another, one set of complications for another, one life for another, and that things can change in an instant.

Lately, this couldn't prove to be more true.

For myself, for my friends, for everything.

Got my bronch results back earlier this week. Mild rejection. Wasn't what i wanted to hear at all, but i know it could be worse. My co-ordinator didn't seem overly concerned, even referring to it as 'a very small amount' of rejection, and that my prednisone was in fact going down. I am now on 7.5mg and 5mg alternately. From my understanding, mild rejection (also known as Grade A) is just some inflammation that goes away on its own. I don't have a temp, and my PFTs are stable in the 90's. So i guess I'm good. But still, it sucks, and it's scary.

Jason, my TGH friend, passed away a year ago today. Rejection again. He had just turned 23.

And now there's my dear Meggs, my fellow sister in Bronchiectasis, who's fighting in an ICU with either RSV or rejection. She's on a vent, and is unstable, and things don't look good.

And I am gutted.

It just shows how quickly your status post tx can change really. And it's scary

There's so much you have to do to monitor yourself post tx. Check your temp everyday, check your PFTs everyday. If there's 10% decrease in function over a course of 2 days it could mean rejection, infection, or that you're going straight to hell, and you must ring up your coordinator immediately and get sorted out. Because if you don't, you might just die.


That's scary. And i'm scared that I won't know how to identify these things if they happen to me. I'm afraid if it ever happens that it will happen gradually like when i first got sick, and that i won't even notice it.

Nothing is certain in this post-tx realm. The highs are high, and the lows are low.

And I am scared.

There is so much that I am afraid of. I want to live big, but I don't know how. I don't know how to branch out and do it since i lived in a cage for so long and had to back out and bow down. I know it takes time...and hopefully in time, I can be crazy again without being afraid. Afraid of what? I dunno...Maybe i'm just childish.

Maybe i don't know myself...

But I do....I just need to step up, say fuck it all, and be proactive.

But it takes time.

And I am scared.

(and my dog died a week ago:()

Wednesday, May 12, 2010

Transplant Friendship

Is different than normal healthy people friendship.

Transplant friendship is...
being able to talk about your fears
of living
sad thoughts

Celebrating small things...
like taking 8 pills at one time
prednisone doses going down
Controlling yourself in the presence of food
running up the stairs
shitting everyday
No more nebulizers

Transplant friendship is...
Talking about FEV1 and FVC and PFTs and ABGs
and knowing what they mean
Getting blood once a month is thought of as few and far between
Talking about vomitting, and exhaustion, and lung function
As if it were something everyone talks about

Transplant friendship is...
Being able to celebrate and discuss mucus
the colour
and taste
the feel
and not be grossed out
Being able to talk about peeing and having the shits
and celebrating instead of being turned off

Transplant friendship is...
evaluating your surroundings
routing out the fuckheads
the people who only want to be your friend when it's convenient for them
or who want things from you
It's valuing the friends you have
because you know
you KNOW
that all it takes
is one little thing
and poof
they are gone

Transplant friendship has...
taught me a whole new normal
has taught me to love life and all the little things
to not judge an outer shell on its appearance
because underneath
you never know
could just be a rockstar

Transplant friendship has...
given me humility

I am thankful to be a transplant recipient, friend, and survivor. It has made me who I am.

Sunday, May 9, 2010

Unconventional Sunday

I've decided to stay up late tonight
because i am alive
because I can
because I can breathe

Even though i have a job interveiw at 10:30 in the morning
And i need to shower before hand
And shave my legs
Which takes forever
because i like long showers
But it doesn't matter

No more shortness of breath
Nothing leaves me breathless
But I don't forget what it's like
Excitment coursing through my veins
For the next day to come
Big hair
Big make-up
for no reason other than
to celebrate the fact that I AM ALIVE

LOVE LOVE LOVE staying up late
and waking up early
No nebs to take away my morning hours
no puffers to open my airways
No oxygen to keep me going
No hours spent clearing my chest
of the relentless shit that drowns my lungs
No hours spent coughing the shit up
Only to have it quickly fill back up
Even if my tummy hurts
From days without having tummy meds
Even if i want to puke, puke, puke all over the place
I have Freedom
Just freedom
Freedom to get up and go

To flee
Hurry up
Be late
Because I am alive

Off to my old rehab tomorrow to visit the peeps and see Carol and discuss participating in the Canadian Tx Games which are in August! Only have till May 15th to sign up so must must make up my mind! Mum says 'what about work?' I say, 'you only live once. what is 1 week off of work?'

Woke up today and spent the day in my jammies on the couch with lots of tea on hand. I essentially was a sloth and did nothing.
Can't wait to crawl into bed and not have to change into jammies. I am disgusting.

Saturday, May 8, 2010

9 months

Well today (ok, yesterday) was my 9 months post tx! How exciting! And how did i celebrate?

Well...on the couch all day contemplating a house that had 1 less dog in it.

I woke up and laid in bed for a good hour and a half thinking about Casey. I was fine. I told myself to haul ass and get out of bed and be productive to take my mind off the fact that he isn't here anymore.

So i got out of bed, and i washed my face, and i got dressed, and i walked down the stairs...

And then i lost it.

My special little boy isn't here anymore. He wasn't at the fireplace, or at the front door, or in the family room by the couch sleeping, and he wasn't in front of the washer and dryer.

He is gone. Dead. Vanished. Forever. And all we will have of him are his ashes in an ugly cement urn and a paw print.

I will tell you about putting him down, because i feel it was anything but peaceful. It took the vet (who was a total sweetheart in all honesty) 2 tries. She had trouble getting his vein and she blew it and he shot up from his laying position. It broke my heart.

"This is it," she said.

She started the injection.

And Casey shot up.

One needle wasn't enough.

It took 2 injections for him to go. And when he went he twitched in my lap.

"What the hell is this?!" i yelled.

And then his eyes flew open.

Muscle reflexes. Horrible memories for me. Trauma. My poor dog. I honestly beleive that he was so sick that he didn't care. But still: HOLY FUCK.


I kept replaying this in my head all day, and I wish i could forget. I occupied myself by cleaning the entire main floor of the house - dusting, vaccuming, cleaned the counter off and it looks fabulous. Did some laundry. Got some GORGEOUS flowers from a friend in condolensce for our loss.

I felt good all day. Emotionally better because I know Casey is in a better place where he's not in pain and he knows that we all love him and miss him.

Mum, dad and I broached the topic of getting a puppy. So soon, I know, but we've been thinking about it since before Casey got sick. Honestly, for me, i'm for it and the sooner the better. Sure, we have the girls (the Spawn and Madyson), but they're my mum's dogs. Casey was mine and my dad's. We all love the girls and they love us, but it's not the same. Casey was a big silly fur ball and when he hugged you he hugged with all of his silly self and you felt it resonate through his thick, homeless-looking coating of fur. I feel it with the girls but its different - not mine. It makes me sad. You can only squeeze and maul a cat before it screams and runs away.

The Heidi Speidi was supposed to spend the night warmly ensconsed in my room for a girls night but she found her way off my bed and shot down the stairs. She's been comforting me which is sweet. Lots of extra snuggles and kisses.

Zoey has been in her lair contemplating her contempt for the world.

Here's proof from yesterday, when I told her to look at Casey because he was sick and didn't have much time left. She just stared and shot lazers from her eyes. The cat has no soul.

Onto other things.

I'm out of stomach meds, because the stupid pharmacy is on a back order for Miraxicam or w/e the hell it's called, so my stomach frigging hurts and i feel like i need to take a big shit and can't. At my assessment Mon (which went well), they upped my dose from 1 pill 4x a day to 2 pills 4x a day, and when i brought the script in Weds night they said they'd have them the next day. Which was fine, because i had enough...

And then I ran out. So i went to the pharmacy to pick it up (thinking it would be ready) and the foreign lady informs me they are back ordered and can't get ahold of my co-ordinator to see if they can put me on something else.

They never heard back. So it's been 2 days without stomach meds and i have no appetite because my food just sits there. Blah.

What i wouldn't give for a huge fart.

And my dog back.

Thursday, May 6, 2010

Casey: My Silly Little Boy

We had to put Casey down tonight:( He was 14. The last few weeks he hasn't been eating right and finally last week things turned for the worse. Dad and i took him to the vet on Monday and they drew blood, and we got the results back Tues with elevated kidney and pancreas levels. On top of this, he is blind and deaf and has arthritis.

He stopped eating 2 days ago.

It's kind of like he knew - he was just ready to go. Here are some pics I took of us today - our last day together as best buddies.

Casey: i was here when you crawled into this world, and I was there when you crawled out. You had your head in my lap and I got to hug you as much as possible and tell you that I loved you. Dad was there too.

I will love you forever, and I will miss you for always.

Casey Patrick C, March 17, 1996-May 6, 2010.

Love love love.