Let me break it down for ya

I got out of breath today, but it was the good kind. It was because i was taking advantage of the gorgeous weather and took Madyson for a walk. I asked her, after we left the forest, if she wanted to go straight of go up the hill.

I wanted to go up the hill.

She opted for the hill.

So we up.

Up and up and up.

It's not like pre-tx where you're out of breath 90% of the time, struggling to catch the slightest bit of air.

Let me break it down for ya.

Pre-tx out of breathness:
You struggle
You gasp
You huff and you puff and you pant
to the point of exhaustion
to the point of dizziness
there is no way out
struggling to not succumb to the darkness of unconsciousness that creeps up behind your shoulders
to catch you as you fall
you try not to pass out
but it's easier said than done
lungs that don't inflate
lungs that don't deflate
they flutter
they fail
and you struggle
you suffocate
you cannot catch a break
you cannot breathe
you need to sit down
but it doesn't help
so you suffer some more
until it decides
to subside
on its own terms

There is no calm.

Post-tx out of breathness:
slowly
like a slow rainfall leaking from the sky
it doesn't built up and impound itself on to you
but rather trickles
not suffocate
there is no panting
no gasping
take a deep breath in through your nose
and out through your nose
in out
in out
deep
hold your breath
let it out slowly
you are in control
take a deep breath in and let it out slowly
let the half-panic subside
because you slightly out of breath from exercsion
not because you are dying
not because your lungs are failing you
but because they are healthy
and this is normal
reach the top of the hill
breathe deep in through your nose
and out through your mouth
you don't need to stop
you don't need to sit
just breathe deep
and calm yourself
and as soon as this sensation greeted you
it leaves you
and you are ok
and your heart is normal
it will not beat its way out of your chest
the way it always tried to
it will not leave you for dead
your lungs are healthy
and you are alive
they are expanding and working in your back
filtering your body with beautiful air
the way they did for your beautiful donor
for as long as they had them
they are mine now
and we are ok
and we are out of breath for normal reasons

Not because death is chasing us around the corner.

Who knew it would be this hard?

Who knew?

Really, but like my spidey senses told me well before I got my tx, I knew at some point I'd have to officially say 'goodbye' to my old life, and that i would have a really difficult time with it.

Is is horrible that my old 'life' connotates 'meds'? B/c that's actually what it is.

Since my tx all my tx meds have lived in a big brown bag on the dining room counter, within reach while i was too weak to go upstairs or my brain was not yet accustomed to/good at remembering just what meds i needed to take and their doses. Tonight, i decided it was time to clean the table off and relocate my meds to my med drawer in my room, and vacate the old ones.

And holy shit, it was kind of hard.

Tossing out my advair (which was new!), septra, singular, azithromycin, 1 tablet of pred from my hospital stay, spiriva etc was easy in and of itself, but when it came to getting rid of the physical plastic stuff - the stuff that tied my to my illness and was essentially, my life line, was hard. I always thought I would rejoice the day I threw out my oxygen tubing, and aerochamber, and accapella, and humidifier thing for my oxygen concentrator, but truth be told: it's enough to bring me to tears. It took me a good hour to sort through my med drawer (and to be honest i had other shit in there like cards, bank statements, pay stubs....but irregardless they were all reminders of my old life). That in and of itself was enough to transport me instantly back to the life i led just 2 months ago.

And i didn't like it. Not one bit.

But at the same time...like i said, the physical ties that remain - the carcasses of my old life - i can't just toss out for some reason. All my old meds and PEP mask, and other stuff are in a big brown bag. My box of extra oxygen tubing is in a brown box. And the farthest they both got was just outside my door. I cannot bring myself to bring them down the stairs and initiate the death of my former life just yet. I cannot be that executioner I need to be. I don't know where they will go in the mean time...but right now it seems too early to say goodbye to the illness that i so badly wanted to be free of.

And then there's my newer aerochamber and the like. Still on my desk with the acapella (which is new too). I doubt i will get rid of those, but i will wash them and put them into my new med bag, in case i ever need to do any temp inhaled treatments (god forbid - but keeping them will save me a fortune in the end!).

I stil have my concentrator downstairs. The oxygen tubing is still hooked up to it and it's on the little ugly couch beside it. I still have to remind myself that i don't need to turn it on right before bed. I won't get rid of it till after my 3 month assessment (which apparently is what most people do anyways). But still, as healthy and lovely and wonderful and full of life as i feel, i can't bring myself to detach and sever the oxygen tubing from the concentrator itself. 1 part superstition, 1 part bafflement.

It was weird to see the physical evidence of what it took to keep those old lungs going. Maybe it's different for someone like me (or someone with CF), b/c you grow up being sick. It's not like something that just comes along, threatens your life, and a couple of months or years later you're fine again. I WAS BORN INTO THIS LIFE AND I CAN'T JUST TURN AWAY, NO MATTER HOW MUCH MISERY IT COST ME. NO MATTER HOW IT TRIED TO WIPE ME OFF THE FACE OF THE EARTH.

So maybe i'm not really 'keeping' this stuff out of nostalgia? Maybe I'm keeping it as a reminder to myself that i am 24 years old and I prevailed: I survived lung disease.

But still, emotionally and psychologically: who knew it would be this hard?

Endoscopy= Not fun

When was the last time I wrote? God knows i've lost my brain.

I beleive I wrote on Weds after i got my tubey thingy pulled. Thurs was great: had nothing planned and i loved it.

Friday I had to be back at TGH for an Endoscopy. I couldn't eat from midnight on. Endoscopy was scheduled at 11:30 am and we were instructed to be there at 10:30 am. Traffic on the way to TO was great. We made it in 40 minutes so we were super early. The hosp in and of itself (the main floor anyways) smells entirely of food, so as we waited my stomach grumbled and i was very cranky. My mum wouldn't let me even have water.

So we go to the 2nd floor for the scope. We wait. The chick called me to go back and addressed me as "Brian". I refrained from physically assaulting her and yelling that she learn to read a little better, and I really resisted the urge to smack her when i was informed i'd have to put a hospital gown on. So i change, and I wait, and then they come to give me an IV. I told them my veins were crap and they didn't beleive me, but when the first IV went in and the vein blew, they realized it. I told them about my No Zone - my hands - and of coure the IV lady went there. I was mad and she told me that i shouldn't be so upset since it was the only vein i had left. Yeah well, you used it and broke it and now it won't work when i go for my regular IV next week. *Hmph*.

Um...so i get wheeled back to the room and they give me this nasty stuff to gurgle twice, and then swallow. I felt like my tongue had swelled to mammoth proportions, and then they injected me with anasthetic and i went out. I was kind of awake when it was done. I remember the nurse (a nicer one) putting my pager in my hand. I looked at the clock and it said 12:30. When i woke up again it was 1:30 and i was informed that they had forgotten about me and left me and that I had been there too long. I felt alright until i stood up. I was all dizzy to walk and couldn't walk in a straight line. Every question that was asked of me recieved the answer of "Yeaaaaaaaaaaah" and that was in.

It was hard to put my clothes back on. My limbs felt really heavy and apparently i farted the whole time i got dressed. They informed me that they pumped air in my stomach (since they were looking at my esophagus/stomach). The only finding i was told about was Thrush in my throat, which i'm assuming is from Advair. Other than that things looked great. The ride home i felt a little sick to my stomach and wasn't the best person to have an intelligent conversation with. At one point i announced to my mum that "It's nice and warm for December..." to which she replied, "It's October." I called my dad too and he thought something was seriously wrong with me. I guess you shouldn't call ppl as anasthetic wears off. Oh well.

I wasn't even hungry when i was allowed to eat since i had to swallow numbing stuff, so i couldn't feel my hunger anyways. I had a coke and finally had a cheese tea biscuit from Timmies at 4pm. SO i went from eating at 11:30pm Thurs night to 4:30pm Friday afternoon. Wonderful.

I more than made up for it at Krystals Thanksgiving though last night! I wasn't allowed to drive however so I got a ride and i ate like a fiend. I can proudly say i slept soundly as i slipped into a diabetic/anasthetic coma for the night. I feel like a pig and i feel much better today! My throat is sore and it hurts to swallow when i eat but oh well! Mum and I went to the grocery store to get food for Thanksgiving tomorrow (when we have everyone over, even though it's on Monday) and of course I ran into a teacher from high school who i had a chat with. And of course i looked like a total homeless person in my sweatpants and t-shirt. Oh well.

Other than that, things are good. I feel like crap b/c of the Tobi but oh well. Hopefully i get called soon. Say a prayer/good thought for ROSIE who is in the hosp! Hope you get well soon and they figure out what you had/have!!!

Bye people.

Gastic Test so far a success!!!

Yup, that rhymed!

I am pleased to inform you that so far, the gastric test has been a success. After having it placed at roughly 9am, the tube still remains up my nose and it's not as horrible as it was the first time around! You will be pleased to know that I reprised my role as difficult patient, as I choked and gagged and vomitted and died all over the place as the tube was being placed. I gagged so violently at one point that I think the technician almost vomitted in sympathetic response to me. That's how magical the experience was.

In total, it took a whole hour to get the tube up my nose. I will go back to TO to get it taken out at 8:30 am tomorrow, and then I will go to TGH for physio, and then Sick Kids for blood, and then back home. Friday morning I have to be back at TGH for a scope of my esophagus (they're making extra sure i'm not completely messed up apparently) and will be partially knocked out for that, and will thus be unable to do a repeat of today's violent esophageal episode. In total, Friday makes 4 out of 5 days spent in TO!!!! GAH!

So that's it really. Hopefully after all this I can and will get the call! Here's hoping!

The tube at the back of my throat isn't too horribly uncomfortable. I mean, I can feel it in there. It feels rather like you have post-nasal drip (for those not in the know, that's when snot from ur sinuses drips into your lungs). It feels rather like when you have a hard chunk of snot lodged in there and you're trying to get it up and out. I can eat a lot easier than I could the first go around, though if i eat a huge chunk of food the tube will pull which makes my nose hurt. As a result, i'm eating smaller things. It's weird, b/c if i open my mouth and look at my epigoltus (that's the hangy thing at the back of your throat, people!) i can see the tube dangling down. I try not to look at it as it makes me want to vomit.

That is all people. I shall update tomorrow. I have to wake up again at 5 am tomorrow. UGH!

Smack on the deck

This is the honest to God story my mum told me over supper of how she fell on the deck this morning:

""So i'm out back this morning - having a smoke - and feeding the fish, when it starts to piss rain. So instead of walking from the pond to the deck, i ran. I ran up the stairs when I tripped. I tripped up the first step and landed on my knees. But it didn't stop there. I kept going. I put my arms infront to stop and my head hit the deck chair and i eventually landed with my forehead smack on the deck.

I have a scratch."

OMFG my mum told me this over supper and I seriously died I laughed and coughed so hard. I hope this just made everyone's day.

My Boys

When i go to TGH, there are 8 people from my city/area, and we all go to the local pulmonary rehab place. Of us 8, 4 have had transplants this year. Since June, my boys Bob, Don, and most recently Ray have been transplanted. We are all anxiously awaiting my time to come!

The other day I was waiting in the caf at the hosp when I saw Ray - a mere 2 weeks post tx - sitting at his fav place eating Subway, as he always does. I havent seen him in a while since his tx, so I ran up to him, bent over slightly and gave him a hug.

"BREEEEEEE!" he said when he saw me. He lifted his arms to recieve my hug, when my bulky 30lbs purse swung around from my back and thumped him a good one in his chest.

Ray grabbed his chest and said painfully, "MY STAPLES!!!!!!!!"

My eyes went huge with terror and shame. I grabbed my head in my hands and shrieked, "OH MY GOD! I KILLED RAY!"

Ray laughed and assured me that I didn't kill him, and that it didn't hurt, but that he still did have his staples in his chest from his transplant. And holy crap, did I feel bad. To think i unintentionally hurt poor little English Ray was horrible. But i hope he's fine.

Don is doing great. He looks wonderful and is all pink and peachy and the epitome of health. Bob is doing good, tho when i saw him Weds he was limping.

"Did you fall getting off the subway again, Bob?"
"Nope. No. I woke up with a charley horse."

Which is good, b/c the last time i saw him, he took a spill getting off the subway. Though he did assure me that he 'protected [his] sternum' when he went down.

Other than that things have been boring. It's humid and feels much like a jungle these last two days that i feel pretty shitty. It was so foggy last night that driving home i felt like i had glaucoma. Yesterday I sat on the couch in the same spot from 8am-4pm. No lie. I champed it up and read all day like a trooper. I did have rehab, but i got diverted by driving my dad to work (which was great, b/c i didn't want to go to rehab anyway) so when i came back from dropping him off (since he kindly gives me the car and rides his bike to work b/c he's awesome), mum was leaving for work which left me all alone. Which meant i had no one to see me off...which meant that I didn't have to go. So i didn't.

Lastnight was a gorge fest. I met with the girlies for a Tudors night. Before that I had supper at Jenna's house, and we went to Chantel's to watch season 1 with Krystal. We ate like pigs. We ate so much that i'm shocked that I didn't somehow slip into a diabetic coma over night. We ate lime flavoured nachos, popcorn, ice cream sandwiches, i had a Crispie Crunch bar, Jenna had 3 chocolate bars, we had Pepsi, and we topped it all off with lemon jello (which we lamented would be horrible to throw up.) It dawned on me that the lemon jello looked like lard, but Chantel concluded it looked like mucus which pretty much put an end to our food hording for the night.

And that is all.

Tomorrow's the day...

Welp, tomorrow is the day that i embark on my trek to Toronto and sign the consent form officially stating that i'm 'listed' - whatever that means. I know that it means, i'm not a blatent idiot, but it's like some underground transplant lingo that when you hear the words your ears perk up and you know what it means.

So yeah, that's exciting. My new portable liquid O2 was dropped off at rehab today, when i was failing to perform jumping jacks in the pool (they looked more like hopping with the odd arm flap). After rehab me and another special person had a meeting with a guy who's post tx and it was great. His lung function is 130% and he's doing a 40mile bike ride this coming weekend. Insipiring doesn't describe it - he literally has no boundaries. I cannot wait until i'm not a lazy peice of shit anymore. Exciting.

Today it seems like most people i've come into contact with had their lunch with a little extra side of asshole. Everyone seems to be in bad, uncaring moods, or they just generally lack enthusiasm...so to you bastards - cheer up.

Um what else? Well i found out what that traffic jam that was backed up to all hell was on Friday: it was an accident, go figure, not a nuclear meltdown like my spidey-senses had told me. I need to find a new route home b/c apparently accidents happen a lot on this road. Um....joy?

That's about it. I think my sarcasm is ready for bed.

Pager has arrived....

My pager has arrived.

The courier guy just dropped it off as Maddy went psycho and barked the entire time at him.

It's soooooo surreal...everything is happening so fast it seems.

It said it was already activated sooooooooo.......I guess i should bring it to rehab with me??

Sooooooooo weird! Is it just me or is everything happening so fast these last 2 weeks? I'm totally not complaining though; i'm finally getting on with my life!

I go to TO on Tues to sign the forms and officially get listed!!!

AHHH!!

Tx listing process update

So I spent all day at rehab getting my ass kicked, which is fine b/c at least i'm tired b/c i did something. We were in the pool for a solid hour and i'm really feeling it. When we first went in my sats were 70% on 3L of O2 and my pulse was 114 or something. Once we got moving and the sat lady came again, my sats were 86% on 3 L of O2 and h/r was 117. Then after I was 91 so.....blah.

I am exhausted but it's cool.

I came home and there was a msg on the phone for me. It was from the tx center and I was informed that the pager would be sent to me free of charge by courier, so it should come soon, and that an appt will be made for next week to go back down, sign the papers and meet with the surgeon. I was very excited. The tx co-ordinator seemed happy to hear from me which was grand.

On Thurs the O2 company will hopefully rememebr to come over to my house and switch me to liquid, b/c I've run out of portable O2. Oh well.

Weeeeeeeeeeeeeeeee!

What else? My lungs hurt today - and I'm kind of worried that I may get a bleed or something but we'll have to see how that plays out I guess!

That's it for now. if i didn't feel like i was going to sink into the ground I'd write a little more but i can't, sorry.

Tres tired.

If things just stay the same, they will never get to change

Welp, since news broke that I am going to be listed, I have had a few thoughts bubbling in my head. So why not share them.

I got to my appt and Dr. Eric Clapton and i sat in a room burried in the bowels of the hallway. He told me we had to decide if i was going to be listed. On one hand, I am still considered a little early (b/c i'm not sick with infections blah blah); on the other hand, my quality of life sucks and I can't do next to anything. He agreed and listened to my point about it not being a smart move to wait for me to venture into full throttle sickness what with my inability to fight off infections and all. So he said, "Well....I guess we'll go ahead and liste you." and he smiled.

But i didn't.

I just looked at him. I knew he was going to say it....but it was like a dream. It was scary. I want this so bad but I couldn't help but wonder if i was stepping into a death trap. I knew i could turn back and say, "I think I can wait!" but I didn't. I didn't b/c even though i felt ok I had to remind myself that for 99% of the time I feel like crap, and that if i don't get listed NOW there's nothing for me to do but sit and wait to get worse. And who wants to wait around for that? That's not something to look forward to. I had that life last summer...where I sat and waited and went in and out of doctors office's and sleep labs and respiratory places all the time. I don't want to continue doing that. No one should have to get used to that kind of life style. No one.

So I sat there and listened....I felt like my eyes glazed over and I probably looked stoned....I felt like I was in a tunnel and me and the doctor were getting farther and farther apart.....and that I was drifting off into unknown, chartered territory...

Which I was. And i am. And i have to realize that if things stay the same, they will never get to change. I will continue to sit at 34% (max) lung function. I will continue to be limited in physical activities and I will continue to be tired all the time. I will put myself at risk of developing pulmonary hypertension (which i am afraid i may be developing) and I will continue to be engulfed in a life of limitations and worry.

What is there to look forward to with Bronchiectasis? WHAT?! A one-way ticket to shitsville? B/c i'm pretty sure when I got on this bus i beleived the ride would only be temporary. I didn't think it it was a 'forever' kinda deal. Whatever. I can't worry about that; what's done is done.

In a weird way, I am scared about being listed b/c being listed means new lungs which means c-h-a-n-g-e. As much as i fight and hate bronchiectasis, it is a cocoon of protection that surrounds me; I am used to this life of being holed up and dependent. I know I can survive but it's scary.

I have to break out of this fucked up cycle and move on - so I am ready for the change.

Went to Toronto Today

Before I begin, the Titanic sank 96 years ago yesterday, April 15, 1912, and I hope you all remembered the way I did. And if you didn't - then you're a completely horrible person.



Lastnight I finished my last exam of 3rd year. Classes and exams are DONE and I am officially a FREE WOMAN.

I forgot to add that swimming at rehab honestly wasn't that bad. I actually enjoyed it. Yesterday we walked and i got bumped up on my O2 b/c on 2 liters my sats were 80% and my heartrate was 150. Not cool. So i'm at 3 l/m now and i am getting switched to liquid tomorrow.

It is warming up and I am still waiting for Howard (my pond frog) to wake up. So yes, my day started bright and early. Woke up at 6am, didn't do physio or anything b/c i just don't care and i skipped along to the bus stop and caught the Greyhound to TO. Got in at 8 something so i snailed along, got a drink and waited for my appt with Dr. Eric Clapton. We sat down and I coughed a lot - really nice, phelgmy, "i'm-feeling-like-shart-today" kind of cough. We talked about how my quality of life was - that it's crap and it sucks - and that my PFTs bob between 27-34% which isn't much of a difference.

But that I'm not sick.

I told him that with my immune system problem, I don't want to be sick to the point that i'm on IVs and oral antibiotics. When i first got dx with this, i was sick for 6 months prior, and it took 3 weeks in hosp with 4 types of IV meds, 5 oral, and an additional year of sickness and antibiotics at home just to get rid of the infection.

Do i want to wait to get there again?
No.

Is it wise to make an immune deficiant person like myself get to that point?
No.

So i left and went to my other appt at Sick Kids. It was my regular appt. Apparently i went on the wrong day - my appt isn't till Apr 30th but regardless they saw me and told me how much they loved me, which i relished and doused myself in. Turns out my appt WAS today ( i found the card) and that they recored it wrong. I saw an immunologist who was in my room when I was 8 weeks old and getting my bone marrow tx. My mum told me they used to joke that he was my bf b/c i would apparently smile whenever i was told he was coming to see me. I'd frown at my dad b/c he had glasses which I guess scared me He was very very nice and we had some laughs, and he told me that I knew my stuff b/c i was asking great questions. I told him that maybe it worked out for the better that my bone marrow tx wasn't a total success, b/c rejection won't be a huge threat. he said that had it worked, i wouldn't be in this situation.

So i went for blood after that and rewarded myself with a pop, a bag of ketchup chips, and a mars bar.

With that i walked to the bus turminal and got on the bus home.

And that's it.






Oh yeah, did i mention that I'M GETTING LISTED!?!?!?!

"Dr. Benson I smell burnt toast!"

I write this as the smell of brown sugar floats up the stairs. Most likely, someone is making oatmeal.

When I told Beka that I smelt brown sugar, she asked me if I was having a stroke. I then screamed, "DR. BENSON, I SMELL BURNT TOAST!" and we laughed and laughed like horrible people do.

If you're not Canadian, then you don't know what I'm talking about. This saying is part of a series of commericals called "Part of Our Heritage", and this one in particular shows how Canadians pioneered brain surgery. The woman is initially shown in her house and she falls...next thing you know she's on the operating table (it about the 50's or 60's - red lipstick and all) when he touches a portion of her brain and she cries in a French accent, "I smell burnt toast....DR. BENSON - I SMELL BURNT TOAST!" and he smiles and the world turns into a happy place. The woman lies there...her exposed brain propped on a table; her head, a lot lower than it should be.

Anyways, I'm sure you don't want to hear about some old-age brain commerical, i'm sure you're eager to hear about how today was so I shall continue gabbing. So i had my check up today, and I will spare you all from boring unnecissary details.

Of course of course, I woke up today feeling better than I usually do. FUCK. I always feel 'ok' when i go to the tx center! And it makes me feel like a fucking FRAUD when i gawk around at ppl who are hooked to O2, who are hacking and coughing up little goblins of emphasyma everywhere (that was low and not called for, but incredibly funny but also exaggerated). Anyways, there are ppl who are visibly sick there. Me - i am deceiving b/c i dont LOOK sick. I may feel shitty but I don't really look like it. So i did my tests and the doctor (who looks like Eric Clapton) comes in and says that everyting is stable and looks the same, and that it's up to me if i want to be listed.

WELL OF COURSE I DO! BUT! My issue is that I have trouble conveying to him exactly HOW shitty I feel, and he knows that. I have a tendency to tell ppl i'm "not bad" when infact I feel like rotten ass. My mum told him i put on a front so i don't bother ppl, which he understood. Long story short, he asked me if i wanted to be listed now, or after exams (this was after i started bawling and telling him how I hated school and i hate everything b/c everything is hard to do. And as soon as i started crying I stopped - which probably made him think it was an act or something). ANYWAYS! He's a nice man and i think he KNOWS that i want to be listed, but i have to more or less show him how much i want this.

SO! I will go back Apr. 16th to see if I will be listed then. In the meantime, I've begun a list of what makes me out of breath and How i feel, which I hope demonstrates to him how much i want this and how dedicated I am.

That's all for now. I will write more later. As more happens.

They Called

They called.

About being listed.

And I missed it.

Yup.

Fucking idiot...right here <--

So i sat around all day and the phone never rang...not once not ever. Even my dad didn't come home for lunch nor did he let me know about his absense prior to me making our daily sandwich. Around 2ish i got an email from my mum saying that my dad had been trying to call all day and that it went straight to voice mail. She said to go downstairs to check the phone, and I did.

I got downstairs and sure enough the phone was off the hook from when I checked for calls today. It wasn't majorly off the hook but just enough that no calls came through. It also didn't do that annoying beeping sound it tends to when it's off.

There were 3 messages.

1 from my dad saying he woulnd't be here for lunch; one was a hang up; and the third was my tx co-ordinator from the hosp saying she had my results from my evaluation.

My heart raced. My armpits started to sweat. Suddenly, i noticed I had a toothpaste stain on my shirt. With scribbly writing I wrote the hosp number down and called them. No one answered. I figured it was a friday and they prob went home early. Nonetheless I left a msg anyway saying I was home and to call back.

5 minutes later the phone rang and i grabbed for it. My heart started beating fast again but i didn't wanna seem like i was waiting around for the call.

She said everything was 'acceptable' for being listed...buuuuuuut it may be a little early. *heart sinks*. However! They will schedule an appt to come back in 2-3 months to see if I am ready to be listed then! YAY! Initially, I thought i'd have to come back 6 months to a year so i was elated to hear this!

If you think of it....2-3 months is March/April. That's not bad at all. It will give me time to finish the school year so if i DO get listed, i won't miss school! Granted, I won't be able to work full time but that's ok! Generally, I feel my shittiest in March and April so hopefully i will be ready!

In the mean time, I was informed that my respirologist will be instructed to set-up pulmonary rehab for me locally. Now i know sometimes, you need to do this kind of as a pre-req to being listed. I can handle that. I have no choice but to accept this.

So there is the news. Yes, I am slighty gutted/sad...but at the same time I knew the answer was most likely this. Hopefully in 2-3 months time...i will be listed and on my way to breathing again!

Laters my lovelies!
Bree:)

Stupid Questions....

There are stupid questions, and then there are stupid fucking questions. Today, for a good portion of this blog, I am going to focus on the stupid fucking questions that I've been asked regarding transplant. Hopefully, you people who have had tx, and for those of you who are waiting, can relate and get a laugh. This was brought to my attention upon having a conversation with Alice, who's a world away in South Africa waiting for a tx herself. Her blog can be read here: http://livinglifebreathlessly.blogspot.com/
And so we begin:

Stupid Fucking Question #1:
"Why are you out of breath? You must be out of shape..."

This question usually comes from some ignoramous who KNOWS that you need a tx and are in general overall poor respiratory health. These people must be kicked and punched and scratched upon asking.

Stupid Fucking Question #2:
"THAT makes you out of breath!?!"

Yes. Yes it does. In fact - EVERYTHING makes me out of breath so shut the fuck up and let me sit. By asking me such a question when I clearly can't breathe is only going to make the situation worse. So do me a favour and go away so I can die alone on the steps temporarily.

Stupid Fucking Question #3:
"Ugh...Smokers cough."

Yes, you're absoluetly right. I'm 22 years old and have already acquired smoker's cough. Thanks for the observation. Enjoy your time burning in hell.

Stupid Fucking Question #4:
" When's your transplant gonna be?"

If i knew that, I wouldn't be sitting here. Fucker.

Stupid Fucking Question #5:
" Who's your transplant going to be from/Do you know the donor?"

Honestly? HONESTLY!? How fucking stupid can you be? The answer is 'no and no'. This is a dumb question which doesn't need justification. It's just fucking stupid.

And so we have a list of 5 stupid fucking questions that I've been asked on countless occasions. I can happily report I'm not the only one who's gotten these. There are more questions I've been asked, such as, upon hearing me cough, "Oh...I've had that" and "Are you sick again", as well as, "Can you breathe w/o your oxygen on?" but...when you're as dumb as these people.....they don't warrant being given anymore attention then I've paid to them already. I even had a prof ask me when my transplant would be, and when i informed her i didn't know b/c someone had to die, she looked at me like I had kicked her up her uterus.

Don't get me wrong, you can't blame some people for just being ignorant and stupid. I know people don't live, eat, and breathe transplant the way I have to, so I can understand to an extent. But asking someone when they're going to be getting a transplant is kind of like asking a healthy person when they're going to have a heart attack in the future (if they even do). The answer is: I simply don't know.

Also, to add to this already long blog, I had a visit from Karyn lastnight in my dream. Today is 4 years exactly that she had her aneurysm and car accident. It was the last time that I ever spoke to her. Actually, as I look at the clock right now, this was the exact time of our last conversation. I am not overwhelmed with saddess the way I used to be. It's kind of bittersweet. In my dream, me, Krystal, Tara, and Jess were sitting around talking about Karyn. For some reason I was really emotional and crying hysterically. Then, Karyn's mum let us inside and we went to her room. On her bed was a brand new pic of her that I had never seen before. It was one of those Harry Potter like pictures where the ppl in it are moving and interacting. Well Karyn was smiling and waving and pointing at us. Then, she started writing something on the frame.

In black writing, she had written: "I miss you guys".

And with that, she smiled, and turned, and I woke up.

Again I was overcome with the same feeling that I get when I've had dreams about her before. They're different from regular dreams when you KNOW you're dreaming. You can actually feel that someone was there. It was amazing.

And with that chickies, I must close this long blog! Hope you're warm - it's a cold nasty bitch outside!

Cheers,
Bree:)

Transplant Fears (dun dun dun)

Firstly, no word from Transplantland yet.

Second, lets talk about my transplant fears, shall we? Great. I'll go first.

Transplant Fear #1:
Getting fat. Truely. I'm terrified of Prednisone b/c of what it did to me the last time I was on it. I blew up. I looked like a monster. I had terrible, terrible moonface. I had to go to PROM bloated with terrible, swollen moonface b/c i had gotten off prednisone and for me, it took EONS to leave my system. I hate it. I hate it. I hate it. I hate it. I know I will prob have to be on it, so lets hope it's a small dose. I'm superficial; i know. So shut up.

Transplant Fear #2:
Getting a job. I'm going to have to live, which means I have to plan my future. That's scary! It's normal - I've never been normal. So i'm scared of it. I hope i can get a good job and afford a house. I hope. I hope.

What else am I scared of? Not much, which I guess is good. I'm terrified I'm not going to be able to find a good job once I'm all fixed and better. But I guess that's better than worrying about other shit But what in the hell will i do with a degree in Anthropology? Work in a museum? I dunno....I really don't. For now, I'm working on graduating. Oh yeah, and doing homework, which I should probably get back to.

I took a break to bake brownies.

Oh me. Oh my. What will we do with ourselves? I guess we'll just sleep I guess. That's ok with me.

It's Bree, Bitch

I'm back, children. And what a ride it was. So let me begin...

We departed for T-Dot at about 6:10pm on Sunday, arriving around 7:30. NOT BAD CONSIDERING a)THE USUAL DRIVE TAKES BETWEEN AN HOUR AND A HALF TO TWO HOURS and b) THERE WAS A "CRIPPLING SNOWSTORM".

We arrive, check our shit in, and make our way to the 16th floor where our room was. My dad hauled the Monster and I in my sweatpants hauled my suitcase with wheels and other stuff. Our room was small but what did we care...all we were doing was sleeping and shitting in it.

My bed's the rumpled one on the farthest part of the pic. Every morning we walked 5 minutes up to the hospital (which was 15 minutes if you're me). The first day consisted of 12 viles of blood, plenty of urine samples (the first thing i said to the lab tech was 'happy birthday' when i dropped my giant orange urine container off) a chest x-ray, ECG (heart thingy) meeting with a social worker, and VQ Scan.

I honestly thought the VQ (Ventilation Perfusion scan) would kill me. At one point I actually thought I died during it. They dangle this thing from the machine and you put it in your mouth while inhaling a vapour that appears in your lungs. This is done so that the docs can see how your lungs work and if they're good or shitty. I peeked at mine and the upper and middle sections were white and the bottoms were black. That can mean that they are working or not - depending on if the contrast is opposite(generally, white would indicate functioning lung tissue - black would mean it didn't. But sometimes, white can mean and absence of function and black can mean function. Compredre? Good).

So there I lay, like a crumpled goddess feeling like I was going to die as the technician kept telling me how much time I had left. Initially it started off as "3 minutes" which 3 minutes later was bumped to "4 and a half". This is when I believe I died. Anyways, it soon ended and I was free to go. Day was finished. Time to saunter back to the hotel and do nothing b/c I'm lazy.

DAY 2 consisted of an Echo (ultra sound of the heart), meeting with the transplant co-ordinater, PFTs and ABGs, and a CT Thorax. This was probably the worst day. It was tedious and painful. The echo was fine but was the first day of many where I spent half of without a shirt on b/c they stick crap to you. It of course was a male nurse (yippee) who echoed my heart. It was honestly good and he couldn't have been nicer. Up next was a meeting with the transplant co-ordinater. These people put together your transplant pretty much and monitor you. She was nice but not overly so - which I beleive is due to the fact that it's probably ill-advised to give away any potential indicators to patients as to whether they could be listed or not. She was fairly neutral but kept saying things that hinted to me like i most likely will be listed (fingers crossed! cross 'em damnitt!). She gave me booklet upon booklet to read which honestly help tons b/c they are so informative. She also gave me a Lung Transplant Manual which officially welcomes me to Transplant Land. How thoughtful....

After this was PFTs(breathing test) and ABGs (blood gas - blood taken through an artery). Surprisingly, my PFTs were up from 29% to 34%. THAT IS NOT A LOT. Anything within a 10% dip or increase is not considered anything really. A lot of it depends on weather and how you're feeling overall. I was slightly disheartened though b/c i was worried it would change their minds about transplant and tell me I'm too healthy. I was really distraught honestly but have decided to change my mind and am choosing to feel positive and that they WILL list me.

After the PFTs was the ABG and let me just say this: HOLY FUCKING OUCH! I had the misfortune of having one before and it hurt. This one was no better. They take blood from an ARTERY in your WRIST. First they feel for a pulse. I was informed that my pulse was weak (again - think back to dying during the VQ scan a few days before) which meant the artery was deep which essentially= WE HAVE TO DIG AROUND. The needle was the biggest thing i've ever seen. They dug and dug, and felt and and felt around and finally, after I was informed there'd be no numbing cream (yay) they went for it.

It's the worst feeling ever. It feels like a sharp object separating your wrist bones and slashing through tissue. You feel it in your stomach - like being punched. It's awful and it just gets worse. I made a face and it took every facial muscle and every ounce of eyeball strength to squeeze my tears in. My first instinct was to cry b/c it hurt so much. I tried to be brave but I think they knew I would cry so i sat there and said nothing. Touching it really hurts and the nurse had to keep pressure on it to keep it from bruising. Honestly, I wouldn't mind a little bruise: it would show people that it fucking hurts and to never do it to me again.

Following this traumatic, scarring, and painful experience was a CT scan. It was short and sweet but again involved the removal of clothing.

DAY 3 was a MUGA scan. Again, removal of clothing. It takes pics of your heart as you like there like a troll and eventually you peddle on a bike. It was really boring and tiring. I met with the anesthesiologist afterwards and she told me all about the surgery. My dad had a lot of questions. She probably thought he was weird. After this I went to the lab to be drained of more blood.

TODAY I met with the research person and filled in an online study thing. I met with the dietician and was informed my weight is perfect (even though I feel like a whale) and that I shouldn't gain or lose any more. After this I went for a 6 minute walk which was stressful. I had to do it twice b/c the physio lady didn't feel I put in my best effort. She didn't beleive I understood what she was asking of me. I beleive I did. So i had to walk the hall for 6 minutes in my 'best effort' and did a lot better. I feel I deserve a gold star.

So, in the event that i DO get listed - which i won't find out till the middle of January - I will most likely need to take a leave from school. This is b/c I will have to attend physio at the hospital 3 times a week for the first month. After the first month, I can transfer 2 of those days locally, and the 3rd day must be done at the hosp. This will require me to commute via Greyhound (God forbid I drive) 2-3 times a week. Yay. THIS IS MANDATORY. I found out my blood type too. Apparently, I've been living a lie. My mother told me I was one type when infact, I am not. Finding this out was much like finding out I had a child somewhere that I never knew about:

"WHAT?!"

"Yeah...you're not this type..."

"Seriously? No. You're lying. My mother told me I was a different blood type. Mum's don't lie..."

"Well she's wrong. You're completely different."

And i sat there in disbelief much like someone finding out the most bizarre thing ever.The average wait for my blood type, I found out, is 3-4 months. WOW. So that was nice! Also, my dad and i DID go to the ROM and I will try to put up some pics!

Sorry this was so long. But i know you were waiting! These are only 2 of about 102 pics - that's too many to post. This is the T-Rex and my beloved Mammoth. OMG!

Enjoy!:)

Don't Go Away...You Might Just Blow Away...

It's time for me to blog blog. It's been a while.

What have I been doing, you ask? Well first, I need the attention of the classroom for formally announce that I'M DONE SCHOOL FOR THE SEMESTER! Fucken right, children, classes finished for me yesterday (the university finishes today b/c i don't have classes Friday's) so je suis tres excited. I have 2 take home exams due Monday, and then 2 others the week after but that's ok.

I worked like a mad-woman Tues and Weds night scrambling to write a 2000 word paper. Not much, but when the internet has little to no sources on Max Weber you can't help but feel a little more than fucked. I put it together, it's done, finished, handed in, and I feel free now....like an animal out of a cage.

Firstly, I must say that I am very happy with myself for sticking out this insane semester. With my lungs going to hell and all, I wasn't quite sure if I could do it, but low and behold I did, and that's just fucking awesome. Go me go!

In transplant news, the hospital called the other day notifying me that my hotel has been set-up for my evaluation! Yippee! How exciting! My dad and I will drive down on Sunday the 16th and come home some time Thurs afternoon. YAY!!!!!!!!!!!! I suggested, now that we have the car (since we figured we'd just take the bus - why I don't know) that we go to the DINOSAUR MUSEUM! *screams everywhere*. If you don't know me, then you won't know that i absolutely, positively, love love love love love dinosaurs. I always have; i always will - and fuck you if you think that's childish or stupid, i find them incredibly interesting. Anywho, Krystal informed me that TO doesn't actually have a Dino museum, but the ROM does - so to the ROM we shall go! WOO HOO! The ROM (for those of you who dont know) is a giant museum that's got lots of stuff. I know that's not too descriptive but honestly, I havent been there since grade 2 and i'm sure a lot has changed in the 15 years since my last visit.

So all I need to do is call and set up O2 which I was supposed to do today but failed to, b/c I went out to lunch with my ladies minus 1 (since Tar-ra-ra is still in PoPo)It's a snowy windy as hell day out again and I drove to school b/c i was afraid i'd be blown away - again.

Completely off-track, up here we joke that Canada has 2 seasons: winter and construction. Well, I'm here to petition, that maybe Canada has 3 seasons: winter, construction, and wind. You may recall in my first entry for September I commented on how as soon as fall comes, it's suddenly windy all the time. Well this week it's been a virtual tornado. It's cool....but it's not good when you're having an awesome hair day.

I should also mention in the last week we've caught 2 mice under our sink! AHH! The first one was caught Tues night, when I had a complete break down and cried and was frustrated with school and shitty lungs and my broken nebulizer and blah blah blah. So anyways, i was in the bathroom washing my face when i decided to look under the sink. There in teh trap was a mouse, caught on the head. I was sure it was dead. But when i went to close the sink it started thrashing around and screaming. It's belly was swollen and it was breathing heavily.

Shit. Do i leave it to die, where at least it will be warm? Or do I let it go outside where it will freeze and die? Well I decided to let it go, so I covered it and the trap in a towel, picked it up and took it to the deck. It was almost 2 in the morning and -10*C outside, but I didn't feel it. Poor thing kept thrashing around and moving the trap, probably hurting itself more. I was yelling and swearing. Finally, i got the trap out and had prepared myself to scream and jump as it scurried away, but instead, it rolled over and died:(

Just like that.

It fought and fought for 45 minutes to live, and I tried my hardest to free it so it could live - and breathe - and i saw it take it's last breath, and die:(

I went inside and cried and cried and cried. It may only be a rodent, but still....it was sad.

Anyways, that's it. Here's a pic from my excursion at lunch with the Ladies today. This pic is meant to demonstrate how i spilt the entire thing I had. I think red makes me look fat:

There's nothing me and 50 feet of oxygen tubing can't do!

Dare I say it?

I woke up this morning and I felt motivated.

What. The fuck?

Seriously, I shot out of bed, had a shower (albeit an increbily long one that used up all the hot water and clogged the drain so it was really more of a shower bath) and ever since then the rest is history.

Let's see what I've accomplished today, shall we? I cleaned the coffee table, dusted it, and dusted 2 other end tables and also cleaned the kitchen counter off. I did 2 loads of laundy. I called the vet with an inquiry about joint meds for our dog. I vaccumed the entire main floor which consists of the kitchen, family room, laundry room, hallway, bathroom, dining room, and living room. I also vaccumed all the mats too. The house looks spotless and quite sexual honestly. And if anyone dare comes home and messes it up, then I'm never feeling motivated ever again!

I sucked it up and wore my O2 to do it. I must say this, as my friend Karen pointed out to my today in an email, that you really don't know how much you use your lung function for until it's gone. For example, vaccuming. It completely wipes me out. After I go back and forth in a room a couple of times with it, I need to stop and sit and catch my breath, and also wait for the feeling in my legs that i'm going to fall over to pass. Once it does, I get back up and go again. It's the best form of physio out there and I hate it, but at least i'm doing something right?

So yes, I did the whole main floor in a little over an hour with the help of my O2 - all 50 feet of it! It was going well until my O2 tubing decided to get wrapped and tangled in the vaccume hose and my oxygen supply got cut off. I then got mad and threw myself on the floor and fumbled and swore at it. I pulled and i tug and I screamed and I coughed, and eventually i said, "fuck it" and i disconnected it, instead of wrestling my way through it.

It was then that I realized that I should probably be on O2 all the time. I realized that "Shit, I'm vaccuming, and i need O2." It was the first time I admitted to myself that I'm sick.

There. I said it. I'M SICK. I'm not fucking normal. I have a lung problem and I have serious respiratory issues.

Leave it to cleaning the house to bring this to my attention. Forgive me but I've been living in dreamland for all this time apparently.

Oh well, despite my nirvana moment I am choosing not to stigmatize myself with the thought. I think 'sick' as in something that will pass, like a cold, or herpes. This is forever. Oh well. Like I said to Karen, at least my arms and legs and brain still work. I can't really complain.

That is all for today. I am off to listen to Josh Groban's Christmas album and revel in his sexiness.

*drools*

Transplanty stuff from today

Welp, today I went up to TO for some pre-tx stuff today and it went well! They needed a T-cell work up as per request of the tx ppl at TGH so that is the reason for me going.

They took 12 viles of blood and i felt drained. At about the 8th vile my vein started aching from being bled so much. I could feel it crappy out and giving up....but it didn't and as soon as it started and ended I was able to leave.

I met with 2 immunologists and 2 doctors. The 2 immunologists have been following me all my life, Dr. R being one of them. Quite honestly he seemed kind of sad that it has come down to me needing a tx but said that there is no reason why my outcome shouldn't be great - astronomical as I am choosing to think! B/c I am lacking in immunity it will most likely work in my favour and I won't need as many anti-rejection drugs so that's good. If anything the immunity enzymes that are in everyone's organs could potentially help build my own immune system so I could be healthier than I am now! Exciting!

Also, the docs said that it will be too hard for my dad and I to constantly drive to and from TO for the 3 days of my evaluation so they are going to set up funds through the CI society and see if i can get put up in a hotel. HOW SWEET!

That's all for now, I am off to make hot chocolate!!!

More Transplanty Stuff

Welp, today TGH called saying they had sent off a request to Sick Kids to the immunologist (who just so happens to already be MY immunologist) for transplanty stuff. I need to meet with them pre-tx to discuss the immune system thingy and anti-rejection drugs and yadda yadda yadda. Everyone going for transplant HAS to do this. I am just lucky that I am already 'in' with these people b/c I am extra special and bing bang boom I am off to Sick Kids on Weds to get blood taken for my T-Cell work up so they can send it off to Transplant Land. Brenda (my life-long nurse) called today saying the appt was set up and that i should get it done NOW as it takes 2-3 weeks for the results to come and by the time eval rolls around they will be here.


Whew! That's an earful and a fingerful. I can't beleive i wrote that much in one sentence. Anyways I woke up today and finished my paper, went to hand it in and spoke to my prof who failed my in my anthro midterm by 2 marks. She said to honestly not worry about it, that if i'm handing in everything else's that's required I should be good. I told her about my transplant and she cried, "oh no!' and said at the end of the course if i've done really shitty she'll take it into special consideration. Or maybe regardless of how I do, she'll take it into special consideration. I can't remember....

That's about it honestly. It was mild and foggy today....I am giving myself the night off and watching TV instead.

That's all for now cats and dogs,
Laters.