My Double Lung Transplant

Wednesday, September 30, 2009

Hypocrisy and Perspective

The weather has changed into fall here in Ontario, and even though it's only been a handful of days, it's all people are talking about.

Wait. Maybe i shouldn't say 'talking' about; it's much better for me to change it to 'complaining' about since that's essentially what they are doing. I think they forget where they are living. They complain about the fall weather like it's a huge, mysterious deal ("how can it happen so fast it was over 30* last week...?") ("oh shit, it's not sandle weather anymore!"), ( and my favourite: "It's fucken freezing! I wore a coat today - it was only 13*C.") you people not have TVs? Do you not know that there was a fucking tsunami in Samoa yesterday and about a dozen earthquakes in the same area? Do they not know that parts of Indonesia also had a magnitude 8 earthquake earlier today followed by another one? Those are 2 legitimate reasons to complain. Sure, fall weather sucks but it is Ontario. Last time i checked we did have 4's not like this shit just snuck up on us. Now earthquakes and tsunamis? Can't exactly look on your calendar and count down the days till the next one strikes, or change your wardrobe to match for when such natural disasters occur.

Oh bitching aside, I am great. This makes me a huge hypocrite however b/c any of my friends know that i spent all day ( i mean...12 hours - all day!) dealing with this fucking Acer. Truth be told, I can't really give the Acer all of the blame since i did contribute a great deal to it's fucking up-ness.

It started off like this, a typical Acer day:
- Turn Acer on
- Wait 10 minutes for it to warm up
- Sign onto MSN
- MSN signs in, loads, ppl send me messages, MSN freezes, Acer proceeds to freeze, I fill with rage
- MSN signs out

Eventually, i get on MSN, and talk to people, and go on about my daily internet stalking excursions and as the day goes on the Acer either co-operates or gets slower as time crawls by. Today was one of those days where - like this shitty, dreary, miserable weather - the Acer decided to draw inspiration from the outside environment and be shitty, dreary, and miserable as well. It got so slow to the point that i decided to try defragmenting, and after acheiving only 3% out of 100% defragmentation in 1 hour and 45 minutes, i gave up and decided i would just delete things i didn't use, and uninstall programs i 'didn't' need.

Not being a techy, this was a huge fuck up on my part, as i ended up uninstalling things that i apparently DO need (like MS word for school and who knows what else). Now i must sort through the ancientness of the interal workings of this gem and locate it in some phenomenon aptly named 'recover'.

Or something.

So now, after thoroughly ruining the Acer, the space bar has joined in and jumps back a few words everytime i hit a certain button. GREAT! This will work out wonderfully when i go back to school in the winter.

So see, i'm a huge hypocrite when i bitch about people bitching about the weather like it's the worst thing that could happen. Um, hello? Tsunami out of nowhere? Acer being a douchebag? Hello, earthquake in already-earthquake ravaged Indonesia. PERSPECTIVE, PEOPLE!

In lung news, THEY ARE FAB! I guess my bronch from last week showed no rejection as my prednisone dose went down from 25mgs to 20mgs! And how did I celebrate? By eating!! I also went on a wonderful power walk tonight with my mum. I'm suprised i was able to stay next to her the whole time as she was wearing an 'old' coat equipped with shoulder pads so high that i'm sure when she looked down at me, they blocked out my face.

Somehow, i managed to stay by her side and made it safely home.

Monday, September 28, 2009

"Friends are friends, if they are next door or thousands of miles away..."

Or in my case, kilometers - b/c this is Canada.

In the last few days I'd have many 'friend' things happen - all good, albeit it kind of sad in their own ways. And before I go on i have to give credit for the title of the entry to my dear friend Lindsey for it!! Lindsey would be one of my 'thousands of miles away' friends, as she lives in Florida! We met online a few years ago and I honestly count her as one of my closest friends. We've sent Christmas cards and the like, and have become very close with eachother throughout the years. We've been through double lung transplants each, illness, ups, downs, prednisone face, rage, man-issues, friend-issues, sleep issues, people-being-stupid-bastard-issues, your-weather-is-better-than-mine issues, would-you-like-some-snow-i-think-i've-had-enough-of-it-already issues, i-would-like-to-see-the-Maple Leaf Hall of Fame-how-can-i-get-there issues, and my biggest one, i-can't-beleive-you-live-around-palm-trees-are-they-real issues.

Sometimes i feel like i have two sets of friends: my healthy ones, and my transplant ones. And with each set of friends there are these incredibly tight bonds. As i've said countless times before, illness will bond you with people like no other way can (unless you have a baby maybe..I dunno...), and there's just that automatic understanding that's implanted in your head when the friendship is made. As you get to know each other better you move past the "we are friends because we are sick" and you start caring about other aspects of their lives - aspects that don't include being sick anymore. Either way, Lindsey has been there for me throughout it all and we talk about everything, and her comment yesterday in an email really stood out to me as it speaks volumes to another friend aspect that i'm going through.

I speak of my dear friend Jenna (usually with Krystal and Katey!) a lot. Well, Jenna has moved away:( Us girls spent all day Saturday together, and yesterday I went over to Jenna's place to help her with some final moving things. Jenna is (as we've been saying) fleeing to the Yukon.

Yes. Yukon. Yes, Yukon as in The Northwest Territories. Yes, Yukon as in "it borders Alaska". Yes, Yukon as it complete other side of Canada. It is not something you hear of people doing everyday that's for sure (unless it's a horrible metaphor for something drastic), and I admire her ballsiness to follow her heart and go on an epic adventure that not many people of any age would have the guts to do. So yes, she is leaving for the Yukon until May, when she will then move out to Newfoundland with her boyfriend forever.

*insert tears here*

I am in denial. Jenna has got to be one of my bestest friends in the entire world. They say you meet your best friends in university and I always thought that was complete and utter bullshit but secretly hoped it was true. Well it is. While I did go to high school with Katey and Krystal, we didn't become real friends till university, and those 3 girls are my best friends in the entire world. Jenna and I met in the summer after first year working in a car-brake pad factory. We worked together for 4 days before i got fired b/c i'm that much of a horrible worker.

Well that's a lie: i didn't get 'fired' per ce i got 'let go' or w/e you want to call it. Basically (and maybe this is discrimmination?), all of the smaller people got let go...b/c the physical aspect of hauling and pushing these huge 100lbs bins full of brake parts was beyond me. I didn't care though, I hated the job anyways - though I made $400 in the 4 days i worked. But in those 4 days Jenna and I formed a friendship, and soon discovered we went to the same university and the rest is history! Turns out Krystal and Jenna had had classes together, and together with Katey we somehow found eachother and the bestest Epic Friendship that could ever be formed was, and it will remain intact until and after the world explodes.

*cue cinematic music*

Um ... so yea. The Epic Flee has officially begun. I will be seeing Jenna in 2 weeks (or 8 days) in TO so i still have that...but until June (when she's back in Ont. for a wedding) that'll be it. I do have plans to go out to Newfie-land for weeks on end and mooch off her family so i have that to hold onto!! But still...this growing up business and getting on with your want so badly for it to happen and when it wish time would slow down.


So yeah, that's my friendship spewl and it probably bored you people. Today i have my speaking thing at my university for that i'm excited about!! They've been calling for a wretchedly shitty day: 100km/h winds, rain, cool weather, things and children flying by your windows, peices of buildings breaking off, chunks of earth flying away, you name it, they called for it, and as i look out my window i see some sunshine and a mild breeze and i've gotta say i'm more than slightly disappointed.

I wanna see things fly by my window. Is that so horrible to ask? I like extensive damage it makes me feel happy. I like windy days b/c i can stay inside and not blow away, but can enjoy the fact that i'm witnessing other things being destroyed and it doesn't directly affect me.

Oh well. That is all. This has been long and I'm sorry. I'll let you know how the speaking thing goes!!

Love your friends and your windy, destructive days people!!

Sunday, September 27, 2009

A True Hero

You wanna know about a true hero? Read the previous entry and then read this.

Lloyd. The last entry was about a tx acquaintance of mine, named Lloyd. He has CF and was listed for a double lung and liver tx. We got listed around the same time. We used to do pulmonary rehab together but they soon began separating all the CF people and myself from having contact to prevent the spread of bugs, so after that, we didn't work out together.

Lloyd got his tx 2 and a half weeks after me. He got his lungs and his liver. Lungs were working well, as was the liver. But other issues came up. He had a heart attack and went into a coma. More complications insued. The battle got tougher for Lloyd.

Today, at 2:40am, Lloyd passed away.

And although he was dealt an arguably shitty hand in this game, he still - after all he went through - was an organ donor. Although his last month of life wasn't the greatest, he still got his tx's like he wanted. His donor extended his life, and now he will save countless others.

So when people say that they can't be an organ donor because of this shoddy reason, or that shoddy reason, think of Lloyd, and all he went through, and remember that he got dealt a shitty hand, but reached out to save others despite all he dealt with.

Friday, September 25, 2009

Survivors Guilt?

A weird concept.

Anyone who goes through waiting and hopefully, receiving, a transplant, can attest to the fact that the bonds you forge with fellow transplant people are bonds you’ll have for life, and that you honestly root for everyone around you to get their transplants. Not only that, but you want them to have as much of a successful transplant that you are hopefully going to have/have had.

With myself, I’ve been SO fortunate to have a good, healthy, relatively uneventful (thankfully!) recovery. I count my blessings and say my thanks every day – and I don’t ever want anyone to ever doubt that. Without transplant and a good recovery I would not be where I am 6 weeks post. I’m feeling fantastic and everything is working as it should in this body of mine. I don’t just take one moment every day to thank my donor, God (or Buddah, or whoever you choose to believe in or not believe in), my awesome surgeons for not mangling me, the docs for not messing me up, my family, friends, pets, and stubborn determination to not fail at this.

And while that’s all fine and dandy, it breaks my heart when I see and hear of people who aren’t as fortunate as I am to have a good, uneventful recovery. It’s something only you can hope of. I’m not wondering, “why did I do so well and you didn’t?” as it does largely depend on your health leading up to the transplant and if you have other issues that could interfere; but it makes you sit and wonder why we can’t all be so lucky to have smooth sailing *knocks on wood*. You become close to everyone but on different levels, but still, you want everyone to succeed, and it’s hard to grasp it when you find out that those you have going through waiting with aren’t as lucky.

So there’s that issue that you sit on, and ponder, and worry about, and send out good vibes, spidey senses, prayers, what have you. You hope that whatever time they have left on this Earth is peaceful, stress free, and when their time comes and they crawl out of this world, that the other side greets them in the friendliest way possible as they crawl into the next.

Then you have your friends who are still waiting – the ones who were listed before you. You watch them get sicker and sicker and hope and try to come up with ways that would get them to receive their call all the sooner, because you know that would the situation be reversed, they would move Heaven, Hell and Earth to do the same for you.

I’d sell a boob if I had to.

One of the toughest parts is that all control is beyond you. You can only offer mental, emotional, and maybe on some level, spiritual comfort. By no means am I claiming to be an expert because I am far from it; these are just some tough observations that I haven’t wanted to address but know that I must. I am not oblivious to the challenges that come with being a transplant recipient, despite being blessed enough to have a good recovery. It’s hard when the people around you struggle. It’s hard when there is nothing you can do. Some days, words and smiles don’t cut it for them, b/c i HAVE been ‘them’ and i know what utter bullshit those words, smiles and ‘you’re in my thoughts’ and ‘you’re next, I can know it’ can feel.


In less preachy news, there is a movement in the province of Ontario to raise awareness about organ donation amongst our youth, called I have been fortunate enough to have been in contact with them and did a small interview last week that was published on my University’s website. They are raising awareness currently among university students in the province. On Monday, I am going to be on the panel at a meeting as a ‘recipient’ to discuss my story!!! How exciting! I can’t wait! Free pizza afterwards too! BONUS!!

Is it ironic that as I write this, “How to Save a Life” is blaring from my blog...?

Tuesday, September 22, 2009


If i was an Aboriginal, my name would be Runs-from-Stairs, inspired by the book i'm currently reading called Into the Wilderness (inspired by the character named Runs-from-Bears), based on an actual event that happened to me Sunday night.I was all settled in bed, warm and snuggly when the annoying and inevitable happened: i had to pee. Which meant getting up, and crossing the 4 foot threshold that acts as a carpeted landbridge between my room and the bathroom. All was fine until i decided to look down the dark stairs and scare myself again.

Like a responsible, mature adult, i pushed it to the back of my mind and swiftly and stoicly swept into the washroom and told myself i had forgotten looking down the scary steps. Until i was finished and had to make the trek back across the carpeted landbridge into my bedroom. I opened the door, peeked down the stairs, psyched myself out, and ran like hell into my bed room, with no where near enough time to both slam my door shut and fly into my bed, get under the covers and calm down. As i ran, i couldn't help but notice that i ran kind of splayed-leg like...kind of frog-leggish. My thigh muscles aren't back to what they were yet, though they are not far off...Still, it was weird to experience 'running' and feeling how far my thighs have yet to come.

So that's my scary story for the day.

What else? I am 6 weeks post-tx and had my 6 week bronch today! IT WENT WELL AND THERE'S BEEN NO VOMITTING YAY! I wasn't really out of it during the procedure either and the minute the scope was out of my mouth (besides coughing up a huge pool of blood from a tissue sample they took), i was talking and being normal and not high! I proceeded to not sleep in the recovery room and instead intrigued a nurse by talking about books and recipes i recommended!

What else is there to mention? I thought there was another important event to to running from scariness, bronching....OH YEAH! TONIGHT WAS THE FIRST TIME I SHOWERED STANDING UP FOR THE WHOLE SHOWER! ALL ON MY OWN! Not amazing or anything but it's another step in recovering and not being dependent on ppl to help me. It felt nice!!

I went to a farmers market that's on at Sick Kids every Tues and that was exciting. I bought some local made maple syrup, local made tomato sauce that mum and i used for a homemade pizza tonight, and we bought some beeswax candles, as well as assorted buttermilk muffins and cherry and apple crumble tarts! ALL MADE LOCALLY!

Before i go: LOOK WHAT I DID!!!!!!!!!

Sunday, September 20, 2009

Proud new owner

Prednisone face watch continues. Sometimes my face looks like a bloated, undesirable moon that almost forces me to dive into the fridge and eat everything - metal and plastic included, and sometimes it looks normal. I blame the lighting.

As well, I am the proud new owner of AN ECHO IN THE BONE! WOOOOO! Thanks to Walmart for breaking their embargo agreement and releasing the book 3 days early, Chapters chose to compete with those dirty bastards and release it too, 30% off. Still, it was hellishly expensive but that doesn't matter. I'd sell my left boob for that book.

I was lucky enough to have lunch with my cousin Tammy and Aunt Kathryn today! Mum and dad came too since it always seems to turn into a spectacle to get the family together but i'm happy it worked out! They were kind enough to give me a (hold your extremeties people) $100 gift card to Chapters!! I havent broken into it yet, I will use it wisely! I SWEAR TO GOD. I'll exercise some form of self control with it...i'll view it as a life line. This just motivates me to read more than i do, b/c truth be told i havent read much since my tx since i'm always out walking or at appts or something. I need a good rainy day to just sit my ass down and read. Currently i've got 5 books on the go which is horrible. My main focus is Into the Wilderness...and I think after this i'll go to An Echo in the Bone, that way, when i begin to go through Jamie and Clare withdrawal all over again, at least the Into the Wilderness series will feed my habit since they are similar in their premises. I won't need to sink into a severe literary depression as i did last year upon completing A Breath of Snow and Ashes and rock back and forth in a corner for days on end, crying. I'll be strong enough to read other books.

I swear it, people. I'll be strong!

I think that's it. I'm off to read.

Saturday, September 19, 2009

I got a one-way ticket... being an athlete!

Yeah yeah, I know that's a tad but ambitious for being a little over a month post-tx but whatever. I feel very good and i want to exercise and get out there as much as possible!!! I didn't walk yesterday as my shins hurt from walking too much, and my physio told me that i need better runners (apparently Skechers aren't legit running shoes), so i went out with dad today and found a cute (and athletically appropriate) pair!. I got them at Athlete's World, and began my journey by thoroughly embarassing myself by knocking down an entire display of shoes when i located my size and decided to haul out the box.

Fail. Down goes the display case.

However, by knocking down the display case like a complete moron, it did bring some man-help from a worker. Around my age, very nice, attractive (albeit slight porn-stasch) and it went swell! The shoes were a good price, i got some socks since i beleive my sister stole mine when she left the nest last month, and i did my best to flirt but not outrageously since my dad was there. I mean, how gross would it be to see your daughter flirting with someone? I want to vomit when i witness people being overly nice sometimes. Either way, i channeled my high school drama skills and and tried to lure the guy and i think it worked.

Note to self: return to Athlete's World very soon...look for something (or someone?). Have valid reason for returning. Bring phone. Potentially add number. Don't knock anything over. yeah. I got home, ripped the shoes out of the box, and went for a 15 minute walk. It was good and i need to shower (even tho i did before bed) since I reek of sunscreen. Jenna is having a going away party tonight since she is fleeing the province to the Yukon and then out to Newfie-Land forever. Gotta look and smell good as we may be going to a pub. And i'm taking pictures. Since university is back in session that also means MEN. WEEEEEEEEEEEEEE!!!!!!!!

What else do i need to mention that's important? Things are going well and i am so thankful and blessed! I am feeling fantastic! I can kind of sleep on my right side, and i don't wake up as stiff and sore anymore!!! I havent need ANY pain meds in over a week! This makes me tres happy!! My sternum feels better as well...i'm coming into the stage where it feels like you're wearing a tight sports's not uncomfortable tho...i just wish my boobs felt supported and not like that were halfway down my stomach all the time. Oh well, can't complain. On my walk this aft i almost had a moment where i started crying, b/c i was thinking about how in under 5 minutes I was already so far from home and walking at a brisk pace and completely not out of breath or tired. It's a miracle, and i have my donor to thank. They are a rock star, and we make a great team the lungs and I! I will always do my utmost to keep them happy and healthy!!!

And before i go: JESUS GOD LOOK AT THIS!:

Looky looky who's back in my life! Oh dear Henry Cavill how i've missed oggling over you! Oggling will begin Sept 30th when The Tudors season 3 returns! Season 3 is promising to be as much of a sexy beast as possible. Very happy lady here!

P.S. An Echo in the Bone by Diana Gabaldon is already out!!!! I went to Chapters and spied it but didn't have my gift reciept! DAMNITT! Oh well just another excuse to return to Chapters...quel dommage

Thursday, September 17, 2009

Kensington Market

I got hauled into a Jamaican pot shop by a scary Jamaican today. He didn't literally grab me and make me go into his store against my will; he started by telling me he had some good lotion (which was shea butter) to let me try.

Why? I don't know.

He was friendly. I didn't buy anything, kinda wanted to get the hell out. I didn't want to act offended either b/c god knows how that would go. Overall he was nice but i'm not sure why he selected me to come in and sample his marvel lotion above all the other 100's of people wandering the street.

In our short convo he told me shea butter helps the skin, that it comes in block form, and he put his hands close together and informed me that i was small.

He musta been smokin' a lot today.

Kensignton Market was good. Dad and I walked from our place. Or rather, i walked in a fast waddle b/c my shins and feet are sore. For those who don't know - and i'm not an expert - Kensignton Market is a huge market in downtown Toronto that houses lots of....random...shops, but mainly market shops for fruits and veggies, clothes, some cafes and the like. Reminds me of Sauble Beach in many ways. It's fun, and it's great to experience if you're ever around! I ended up buying 2 bags of organic nachos, strawberries, kiwis, oranges, and some nuts.

Feeling good! Sternum is a little sore/iffy feeling tonight. Not sure if it's coz i've been sitting for a while or if i've done too much with my arms? Either way, I'm off to bed soon for some proper sleep! I have my weekly x-ray at 8am, and then physio at 9am and then i'm done! HOME TIME WEEEEEEEEEEE!!!!!!!!!!!!! PFTs were up to 55% today as well. YAY! Hope they're higher next week!:)

Tuesday, September 15, 2009


My dad left me in a revolving door today.

We went to the AGO - Art Gallery of Ontario - and to get in the front you pass through revolving doors. So dad went in in front of me and pushed...and then got in the building and kept on walking and left me stuck halfway. So I stood in the revolving door and stared after him. After he noticed a massive lack of me, he turned stopped, turned around, sauntered back over (much to the shock and amusement of the security guy, who was probably wondering why the fuck i couldn't keep pushing the door), and said, "Oh yeah...I forgot you can't open doors yet."

The AGO was good, but my feet are fucking KILLING me b/c of all the walking i've been doing the last few days. I enjoyed the art, but unfortunately, my focus was more on where i could find a spot to sit rather than appreciate the art...I like the older's not's like the aboriginal art and the portraits from the 18-19th centuries...and i liked the model ships in the basement lol...yup, that's my artistic critique. You can tell i'm not an artsy fartsy. It was fun nonetheless. Lots of stairs too - all of which i took!:) AND DIDN'T GET OUT OF BREATH WEEEEEEEEEEE!!!!!!!!!!!!

So yeah, my dad it staying with me this week since mum went back to work for the week, tho she has been working from the condo. We've done lots of walking, and found a Chapters ( I controlled myself and got nothing) and then went to the World's Biggest Bookstore today (which apparently is part of Chapters) and since i had a gift card i got another copy of Vanity Fair that's edited so hopefully i can actually read it this time!

I have another gift card that i am saving for next weeks's release of An Echo in the Bone from Diana Gabaldon!

Other than that, that's it. Lungs are great and I love them! I am praying for all my tx friends who are waiting to get their calls!

Sunday, September 13, 2009

The First Sneeze - and Yawn

Ok so it's technically my second sneeze...but this is my first sneeze being aware of how it will feel.

My first sneeze post-tx was on August 21, when the diabetes nurse (i'm not diabetic but they give u instructions on how to check blood sugar b/c pred can elevate it. I'm lucky that all i have to do is monitor mine), was in, when it happened. And it fucking hurt.

I have not - up until now - sneezed again. But for the last few days i've had the build up to sneezes and then the sneeze flees my nasal oriface and it's gone. All urges to sneeze vanish and i'm fine, safely ensconsed in my pain-free zone of happiness that i've had established for the last 2 days (no pain meds!)

Tonight however, while doing an emaculate foot scrub in the bathroom sink, it actually happened. The build-up, which i thought would stop...and then BAM - a sneeze! Not of massive proportions, but of normal proportions anyways....The build-up hurt, the sneeze did too, but it wasn't clutch-your-chest-scream-cry-knock-something-or-some-small-child-over-hard-enough-to-make-it-feel-your-pain-worse kinda pain. It was...sore more than anything.

It doesn't mean i enjoyed it. It doesn't mean i'm sitting and welcoming the next one b/c i'm not. But it happened and i didn't fall apart at the seams like i feared would happen. But i'm still afraid of the next one.

And yawning - i've been able to yawn! Much the same process as sneezing, it's more the build-up that hurts, not the yawn itself. I havent been able to do one big yawn, but i do them in intervals seemingly. Not as frightening as a sneeze, which has uncontrollable force beyond any power i possess.

And in closing, the final part of my incision scab fall off whilst making pancakes. I went for a hike for an hour and a half today with my dad, and i feel great. OH! And i slept on my back lastnight and not inclined anddidn't wake up as sore as i thought i would! Yippee!

I think that's it, mes amis!

Thursday, September 10, 2009

Lets snap back to reality, whoops there goes gravity

I had a scary moment in the shower tonight.

No, i didn't slip, or fall, or rip myself open by slipping and falling and flapping around in the tub like a baby seal. No, i wasn't emerged upon by some random pervert and almost kidnapped. And no, i wasn't stranded without the aid of my mum and had to helplessly re-teach myself the ins-and-outs of self bathing (which btw I know and remember...but with this little issue of not being able to turn my torso's very difficult. A wired sternum is very debilitating at the most vulnerable of times...especially when those times consist of you being completely naked and confined to plastic chair).


I was suffocating. And dying. And i felt the way i felt when I had my old lungs. And it completely freaked the fucking shit right out of me.

For those who know me, know me, you know that i used to loooooooove long, hot showers. Now? Not so much. I mean i love a hot shower, esp. when it relaxes my back muscles and allows me to stretch my chest a little more, but when i can't turn around to control the temp and need to rely on my mum, it's not so fun. So i sat my muscles relaxed, but the steam got to me and suddenly, i was thrown back into my old world and i could barely breathe. I threw part of the shower curtain open to let cool air in, and through 'pursed lip breathing' (which is a HUGE no no post tx apparently), i slowly calmed down. But the feeling like i couldn't inhale, and the heaviness in my chest from the steam, was unbearable, and i wonder how i ever lived like that.

I was only thrown back into my old life - which only ended a little over a month ago - for about 3 minutes, and i couldn't deal with it. Suddenly, i forgot how to breathe, and it terrified me.

I know this is normal. My doc told me most post lung tx people experience this, and it's not that you can't breathe, it's a psychological thing. I guess with me, since showering always exhausted me, the steam just triggered memories and suddenly, i fell back down the rabbit hole into Bronchiectasis-style breathing.

How did i ever live with just 21% lung function? How in hell did i manage? Have i forgotten? Am i that cocky??? I had my PFTs today and these beautiful lungs are already functioning at 53%. 53% compared to 21% a little over a month ago...that's a 30% increase...i can't wrap my head around it. I can't wrap my head around the fact that this has finally happened to me...And yet i can, b/c it feels so normal...But it's not.

But in happier news, i stared at myself naked in the mirror before my shower. Yes, yes i admit that i did, and i don't really give a shit who knows it. My bruises are going away, my incision scab has almost all fallen off. It was weird to stare at myself and what i've been through - knowing i was wrenched open, had a major organ replaced, and sewn back up with only a 'clamshell' leaving its mark. What really baffled me was watching my ribcage work. Pre-tx i breathed with my stomach and my ribs did not move. Now, my upper chest rises and falls; the bottom portions of my ribs expand, as does the front. I can take a deep breath in. It was strange to stand there and stare at myself, and know that everything is working. Just like that.

Lets snap back to reality. Whoops there goes gravity....for sure.

Wednesday, September 9, 2009



Second, there's not much to report. All i had was physio today and mum and i went to the Harbour front and dicked around on the dock. We walked. There wasn't as much to do there as i thought there would be, but it was still nice to go for once, instead of driving by it and looking longingly. It's weird to walk freely and not be out of breath; not worry about how close we can park and the least amount of walking that can be done. Now it's kind of like, the farther away we can park and the more i can walk, the happier I am. Very strange.

So yesterday (whoa just had a deja vu), saw me admitted into the hosp for that not-really-looked-forward-to chest tube/ 'cath' (aka PIGTAIL CATH THAT FUCKING HURTS). We got in around 12 lunch and waited in a room. It was boring. I wanted to escape but could not. I wanted fries too, but wasn't allowed to eat as the procedure was scheduled for 3-4pm.

So we waited, and around 4 the doc comes in and says it's not scheduled, they're not gonna do it afterall as the radiologist discovered that where this air/small fluid pocket is, is located near a blood vessel and the risk is greater than the benefit. I was happy. He said that since i'm feeling fine and walking and improving and had no idea to begin with that i even had an air pocket hovering above my lung, that they are going to leave it...keep up with the weekly x-rays, and go for a CT in a month to see how it is.

I mean, if they can take care of it, go for it, sure. But if it's not bothering me or posing a threat and has the potential to disappear on its own, why not let it? I really don't want to entertain the idea of being sedated and chest-tubed again and with all that pain. If nature can take it's course and drain it on its own, let it.

But what do i know?

Had some upper back pain today between the shoulders. I have downgraded to regular Tylenol and only took some this morning for a headache at 8am and again at around 6:30 for my back. It gets sore if i sit scrunched up and slouchy-like.

Had a pretty shitty sleep as well, as i had a nightmare about Michael Meyers being in my room. It scared me so much I turned my light on at 3:30am and opened the door to make sure my mum was ok. I havent seen the new movie but my friend did, and said it was so brutal that she hated it. Which says a lot.

Other than that there's not much to report. Early day tomorrow with bloods, pfts, and physio, and then that's it. We'll see what kinda trouble we can get ourselves into, mum and i.

PS. WTF happened to my counter at the bottom??? i was above 50, 000 i'm a mere 11,000 whatever? GAH. *self esteem crumbles*

Monday, September 7, 2009

Which is Worse?

First of all, I'M OFFICIALLY ONE MONTH POST-TX!:) MY NEW LUNGS ARE ONE MONTH OLD! One month ago i was in surgery probably having a lung put in. YAY FOR ORGAN DONATION!!!!! YAY FOR MY AWESOME DONOR!!!!!!!!!!

But to the point of this blog: which is worse?

Which is worse: being hit with the shits on the Gardiner Expressway while traffic slows to a crawl as people watch the annual Air Show, or; being hit with the sudden urge to vomit while the Gardiner Expressway traffic slows to a crawl as people watch the annual Air Show, or c) not being able to decipher if you're being stricken with the sudden urge to vomit or shit all over the place while traffic slows to a crawl on the Gardiner Expressway as people watch the annual Air Show, so you sit in misery hoping that stuff doesn't spew out of you from either end...b/c lets be honest...on the highway, there's no where to go.

No where safe, anyways.

So yes, as mum and i drove back to TO from our weekend home, i wasn't feeling all to well. Didn't feel that great over the weekend in the gut area, and i'm pretty sure it's b/c my cyclosporine was upped massively and i havent quite adjusted yet. I don't feel horrible 24 hours of the day, it's just for the next few hours after i've taken it. And to add to this, with all the Tylenol i've taken, it's kind of backed me up and's not fun. What did keep up occupied on the drive - and kept my mind off my stomach and my ass - was the annual Air Show..where fighter jets and fancy planes do fancy swirly stuff in the air and stunts and they're really loud. The Snow Birds are part of them...and as you can tell i'm not entirely educated on this Air Show business but just chalk it down to fancy air planes doing fancy airplane tricks. I did get some pics and when i stop being lazy i may post them. It was pretty cool.

For those not 'in the know', the Gardiner Expressway is part of a major highway leading out of TO. It's so heavily populated that it could be its own city except everyone lives in cars. The Air Show was at the CNE (Canadian Expedition which is the 'official end of summer' and ends today and coincides with the CNE closing) is at the lake (where the CNE and Gardiner are) so as you can imagine, people were pulling over to watch the fancy airplanes do their fancy stuff and it was slow, and there I was, contemplating what i'd do if i was suddenly stricken with the shits or i had to vomit.

But neither happened. I just felt like it might.

So yes, which is worse: vomitting on the side of the highway, or having the shits? I vouch for having the shits, which is the least dignifying thing i could ever imagine happening. How do you hide yourself if that happens? You can't. There's no grass. At least if you vomit u roll down the window and it's done with (unless it's the winter and the windows are frozen shut - then you're pretty fucked).

But the shits?? Do i need to sit on a plastic sheet or buy some adult diapers now?

Sunday, September 6, 2009

Those who fall the hardest...

So i went out for the first official time lastnight to celebrate Krystal's bday (which happens to be today!) It wasn't a huge event by any means - just a small get together at a pub. We sat at a booth and ate and chatted and it was great. All i had was a regulare Iced T and some nachos (which i ate far too many of) and was happy. We sat there for about 3 hours and had a great time!

When we left, Katey told us she could drive us home, but that we'd have to walk to her car which wasn't far, just on the other side of the block. I knew i could do it. But here's where my problem sets in: i only had major surgery almost a month ago, and while i feel great, i forget to remind myself to slow the fuck down. So we're walking down the street and i'm marveling at the fact that i can walk and talk and how before i couldn't when out of nowhere my knees gave way and i crumbled onto the cement like a child, knees first - hard - hands second, face barely missing the pavement.

I felt and landed basically in the position of a frog. And i stayed that way for about 3 minutes in shock, while Katey and Krystal stood above me in shock too. And then we started laughing, b/c it was completely random and funny. But then I realized that once i'm down, i can't get myself up on my own yet. So it took about 5 minutes, between laughing and figuring out how to maneuver me, to get me off the ground.

While it was funny, I'm still berrating myself for not slowing down. I don't care that i fell so much as i care about the fact that i did use my hands to stop myself from breaking my face. I'm worried that any force that reberverated up my arms may have jolted and hurt my sternum. However, my sternum feels fine and i havent needed any pain meds today so that's a good sign!!! Needless to say I am taking it very easy!!

I felt like utter shit yesterday morning. I threw up some Gouda cheese that was part of a gift basket at some point. I've also been really really tired, but i know it's because during the week I get up early and don't sleep long enough. So this weekend i've been napping, napping, sleeping 9+ hours and am feeling better. I know a lot of it is also b/c they upped my Cyclosporin dose from 75mgs in the AM and PM to 100mg in the AM to 125mg in the PM. Holy talk about a massive jump! I understand it will take a few days for my system to get used to the change, but it means my mornings are very slow as i tend to feel iffy for a while after taking my meds once again. Oh well...can't complain.

Clinic was good on Friday. Bronch showed some mild rejection that they're not worried about and won't treat but will monitor. I'm not worried, as they have told me that mild forms of rejection happen to about 99% of newly tx'd people within their first few weeks. They are hoping the cyclo dose change will help with things so that's good. The bummer news is that i have a tiny air pocket above my upper right lobe. They don't think there is fluid in it, and it hasn't grown or anything, and they're not worried about it, but they want to admit me at some point this week to put in a cath to drain it, just so that it doesn't become an issue, and so that it doesn't get the chance to ever become one. So in that respect, i cant be bummed. They are being proactive for my sake, and they said i would only be in for 24 - 48 hours at the most, and while i'm in I'm free to do w/e i want so i can't complain. They said from my CT scans, my lungs have healed so well from the surgery that they don't even look like they were ever transplanted and they look as if they've always been mine! SO HURRAY!!!!

Also in clinic, i found out that i was carrying way more bugs pre-tx then I ever thought i had. This is another reason for putting in the cath drain so that any lingering pre-tx infections that could be living in my sinuses and trach, don't get the chance to infiltrate this air pocket and infect it and fuck it all up for me. Not only did i have aspergillus pre-tx, i had a hole slew of really horrible things, like H. Influenza, Myo something, some other stuff, and most shocking and scary of all was STAPH! I didn't just have Staph in my lungs, i had in on my lungs as well. That's fucking scary, and i won't risk any lingering Staph-y infections so as much as a catch drain doesn't exite me, i don't want any pre bugs to come back.

So yeah...i think that's it for now.

Thursday, September 3, 2009

Are you ready?


The following people i expect to be in attendance at the the 2011 games: Alice, Evlyn, Meghann, Marjolein, and Cassie. Anyone else who wants to attend (granted u've had ur tx and are healed and have the go-ahead) is more than welcome to show up! But the afforementioned are demanded on behalf of myself and...myself.

Seeing as i missed out on Australia - for a good reason tho - I am uber stoked for Sweden 2011! I have 2 years to a)figure out what i will do; b)learn what i am good at; and c)TRAIN!. My friend Sarah (who had a double lung and actually went to high school with me tho we didn't know eachother at the time) have decided to train though we don't know exactly what we will do seeing as we're not really good at anything. I'm a dancer...tho i doubt dancing is an event. I suggested cycling...but i don't know if that's an event either. I don't particularly enjoy running - or rather, didn't - but that could change in the next 2 years! I shall scope out the site more thoroughly and get back to you people about this.

The last 2 nights i've had issues swallowing my cyclosporin. It seems to lodge itself in my esophagus and slowly crawl its way down into my stomach. I had no issues taking my meds with oatmeal this morning tho so i don't know what it is. Maybe tea is losing its effect. Also, i had PFTs this morning and they were the same as last week, which suprised me considering the amount of walking and exercising i've been doing. However, i understand that a)wanting them to be higher than they are in one weeks time considering i'm only almost 4 weeks post is asking too much and extremely unrealistic; and b) i was in horrendous pain b/c i had clotted post-bronch goo slowly making its way up and out. Even tho it's the tiniest bit of brown gooiness, it is so incredibly painful to cough up! But fuck, once its out the pain is gone! This however, did not stop me from clutching my left side, bitching and moaning, and being overly dramatic about how much pain i was in. I made a point of informing everyone about how much pain i was in if they willing to listen.

Yesterday afternoon saw mum and i walking around downtown Toronto for 3 hours. We walked from the hosp to the giant HMV, ate lunch at Red Lobster, finding sales at Guess (found a $44 tank on sale for $29 but it came to $16!!!!!!!!!!!!!), got my post tx shirt made (will post a pic at some point), and eventually found our way back to the hosp, into the parking garage, and home the appt where i promptly napped away my tiredness. As a result, my legs wanted to nothing to do with my today, but i made them.

Today i had bloods, pfts and physio. I rode the bike for 16 minutes...didn't do the treadmill due to my epic walk around DT yesterday, and came home, where i napped and lounged. Tomorrow it's up at 8am for xray, clinic at 9, physio 10:30, then HOOOOOOOOOOOOOOME!

Hope you're all well! And yes, i'm feeling better!!!

I found the sports! Thanks to Megs help, i needn'tve looked under 'events' to find out what activities there were but rather should've scrolled up to the top and looked under 'sports'. There listed in the link provided was, as thought, was a list of sports to be entered into! And yes my friends, CYCLING is one of them!!!!

As of now i would like to unofficially enter myself into cycling, badminton, maybe kayaking, and to stereotype myself a little further, winter sports (b/c all Canadians can do wintersports - Snow People Building is by far my fav Canadian sport - that and making Igloos).

Wednesday, September 2, 2009

Frigging munchies!



STUPID PREDNISONE. I don't beleive i am actually hungry, I beleive it's the prednisone letting me think i am and forcing me to cave and eat a mountain or the wall across from me. Well I won't. I have will power, damnitt. I WON'T RESORT TO EATING THINGS THAT SHOULDN'T BE CONSUMED.

Well you know what, munchies, you won't win. No. I won't give in. I've found a way around you (should i be disclosing this? will this come back to haunt me? Holy fuck will i pack on 50lbs unwillingly..?) I'm having a drink instead. Chocolate milk. Good for the bones, since Mr. Prednisone may or may not hurt you. Yup, i'm drinking chocolate milk from a crystal wine glass and doing in with class. That's how it's done, and it makes me feel special.

Maybe the next time the munchies strike I will put on fancy earrings and my nicest item of clothing and drink something really nice from this crystal wine glass.

You won't win. NO. I am horrible, vain person.

I hope this chocolate milk doesn't deposit itslef in my double chin or jowels in the morning, b/c i will be seriously devestated.

And fuck you prednisone for giving me rage!

*flings self onto bed and starts crying*

*screams like a child*

*pushes old ppl out of the way*

*breaks window*

*wipes eyes*

Ok i feel better, even if it's only in theory.

A year ago today i had my false alarm. And a year later i have new lungs. That is something to be hugely thankful for.

What else? My sternum hurts:( I'm getting more feeling back...i don't know if it hurts feels tight and heavy and like there's pressure on it. My armpit is getting more feeling too. I went for a walk in the hall for 20 minutes and that really helped.

Know what else helps with the sternum pain while walking? LISTENING TO SPICE GIRLS.

*end erratic and random blog entry here*

Tuesday, September 1, 2009

And the winner is...

Versed, for making me vomit up my peanut butter and jam crackers. And my intuition, for reacting to the bronch exactly how i thought i would!

My issue is that i keep thinking about how that stupid mouth swish tastes, and my pee smelled like versed, and 5 and a half hours later, up came everything, but i feel a lot better! I just hate how i mentally psyche myself out by reminding myself of how awful these drugs are. Once they are completely out of my system do i feel better. I came home and napped for 45 minutes, and may nap again. No galavanting about the city today for mum and me I don't think...I want to, but with the lungs healing, i don't want to risk anything floating inside the fresh wounds and god forbid, festering.

Oh well.

Bronch went well. Doc said everything looks great! Coughed up some blood right afterwards which i know is normal and the nurse encouraged me not to cough, to let it settle, and that when i cough later on I may bring up some dried blood and maybe clots but clots are better than fresh as it means the lung biopsy spots are healing. So over all, things are good! Not too much pain, but i took 2 T2's to keep my comfortable so i'm not a miserable bitch.

Some steristrips are starting to come off. I really want my staples out, as they are starting to bother me. There is one spot on the side of my right boob that has 2 staples and it's where the steristrip fell off -willingly!- and it looks great! Healing nicely! The feeling in my armpit is coming back as well.

I think that's it. Today is gonna be a pretty chill day. All I have tomorrow is physio at 9am and then I don't know what mum and I will do. I'd like to go exploring...hopefully outside of Queen's street!!!