My Double Lung Transplant

Thursday, May 28, 2009

It's raining, it's pouring...

It's the perfect day to stay inside in your sweatpants, snuggled on the couch reading!

Weeeeeeeee! It's literally pouring pouring pouring outside. It's humid as can be and i'm strapped to my O2 b/c i cannot breathe, and i have all the windows open and i'm making soup, as i wait for the O2 man to come and fill my tanks. It's also thundering loudly. I don't know: it feels like the perfect day to just sit on the couch and do nothing.

I dunno. Maybe I'm a romanticist (sp?). Maybe i enjoy idling in my half-world. But either way, I'm going to enjoy it.

Oh, and take a Tylenol 2. I've been in chronic pain for over a week now and am taking T2 daily. Only 1 pill at a time tho. Feels like someone took a scraper and went a little crazy inside my sternum, but what can you do.

Cross those fingers and toes and whatever else you deem appropriate, please!!

Weeeeeeeeee raining thundery day!

Tuesday, May 26, 2009

May I have the attention of the classroom please?

I'm just gonna come right out and say it. I'm not gonna save it for the middle of the blog. Grab on to all your extremities people:


My status has officially been changed! I'M OFFICIALLY HIGHER UP ON THE LIST! To say that i jumped up and down and screamed would be an accurate, honest description. And to say that i had a coughing fit of joy on the couch immediately afterwards would be another accurate description

I had clinic yesterday and it was discussed. Immediately afterwards I saw my co-ordinator in the assessment office where i was filling up my tank. I told her how clinic was and how the doc said she'd discuss the change with the physio ppl, and she said, "Funny - i thought they already changed it. Either way, that will put you pretty high up so - BE READY"

And then TODAY - more like, now, she called me, confirming that they changed my status and that "this puts you pretty much at the top for your blood type, and that [the call] will most likely be sooner rather than later"


So that's why i havent updated b/c i didn't want to jinx anything.

I also had a CT scan yesterday. I joked with the tech afterwards. I said, "Well, were the lungs lovely" and he laughed and said, " least you held your breath..."

YAY OMG!!!!!!!!!!!!!!!!!!!

Thursday, May 21, 2009

A Fucking Glorious Day to One and All

And I mean that with the utmost sincerity – not sarcasm.

What, Bree, sincere? Yes, it does happen. As do miracles.

And trolls under bridges.

Anywho, that’s not the point, the point is, today is fucking amazing! Of all the things i love about living in Ontario, spring and summer are amongst my top 2 (health care being number 1!) I woke up at 9:45am and it was already 20*C, with a forcasted afternoon of 30*C and a humidex of 34*C. BEAUTIFUL! The sky is blue and it’s absolutely gorgeous out today. As shitty as having my life on hold and not being able to do much about being listed, being listed allows me to truly relish and appreciate these gorgeous summer days that i only dream about in the long, horrible, monster that is winter time and the ugliness that’s early spring when everything is mush and slush.

So the fact that – after yesterday’s lengthy visit to TO – i can spend today out in my backyard, with the fresh blooming flowers, the warm wind, shorts on, reading, writing, doing what i love the most is so simple yet so amazing. Everyone else i know is trapped in an office somewhere. I consider myself lucky to be able to spend today’s in natures beauty. Oh and washing summer bedding! I wish i had the energy to put it on the line but i don’t...but regardless, YAY. Happy spewl over.

In other happy news, I got that CT scan moved to Monday after clinic so yay! Persistence and a sad voice and manners go along way. Weeeeeeeeee!

So that’s about it really. I can’t think of what else to write about. I just ate my mac and cheese and am going to spend the aft finishing up Annette Vallon!

Hope today sees you all well and smiley!

Tuesday, May 19, 2009

Why not wait? it's not like i have anything better to do

I'm really not looking forward to tomorrow, or next Weds to be honest. Since getting worse i'm back to going to TGH every Weds, which is fine, but it's tedious, esp. when the days are long and drawn's not like i go, do rehab with Dave, and we get the hell out and that's it, see ya next week.

Tomorrow Dave has clinic in the aft. We both have rehab at 9am, which is fine. He's nice enough to drive me and he doesn't make me pay for gas (tho i bring Tim's!..not much but it goes a long way!), so i'm not complaining that it will be long. I can read my book.

What makes it worse is that next Weds I have a CT scan, and the only available time is 2:30 in the afternoon. I'm not thrilled and i really want to get it bumped up to an earlier time so Dave doesnt have to sit around and wait - i feel bad making him wait! So the ppl at the CT place told me to call around 9 am every day and try to get a cancellation, which i will do. It's one thing if i have to wait, but i hate making other ppl wait - for me. You know??

So yea, needless to say i'm not looking forward to either day just b/c of their sheer length. Hopefully i will get my call between now and next Weds and the CT scan won't be a massive issue. Blah. Tomorrwo i also see O'Intern. We will see what kind of mood i am in. The current moment's mood can be characterized as 'blah'. is warming up! It's gonna be in the mid 20's all week and we - pardon me, mum and dad - got out all the patio stuff yesterday! YAY. I have been reading and loving my Annette Vallon book, and i'm 3/4 of the way done. Woo hoo.

Other than that, that's it.

Over and out, comrads.

Oh yes, what would today's post be without a historical antedote: 473 years ago today, Queen Anne Boleyn was executed b/c of that obese monster King Henry VIII.

Saturday, May 16, 2009

"Never stop dreaming, dreams make life bearable..."

Those are the wise words of my great and frequently mentioned friend, Karyn, whom as many of you know, passed away 5 years ago.

I’ve been dreaming a lot lately, and not in my usual vivid spidey-sensed kind of way. I’ve been dreaming about life and what I want to do with it once I break out of this prison and am able to live, and not sit on the couch all the time thinking about what I want to do. Seeing as I’m an avid reader, it’s only understandable that I’d want to visit the many places I read about. Since I’ve more or less done my Tudor court readings (I still have 2 Anne Bolyen books, but that Mary Queen of Scots book was so politically and religiously laden with information that my brain needs something that doesn’t force me to think so hard), so I’ve begun my much awaited Annette Vallon: A Novel of the French Revolution book, which has thus re-sparked my love affair with France and Marie Antoinette. So among my top places to travel post transplant are:


Other places that I want to travel to are:

New York
California (specifically San Fransisco to see the fabled cable cars and history! And experience an earthquake perhaps! Oooh…)
Texas (I don’t know why to be honest)
New Orleans (for the history)
Greece (I want to start reading about Greek history)
Australia (of course!)

And then since I want to see all that, I may as well travel within my own country, of which I’ve unfortunately done little. They are:

British Columbia (the Pacific ocean and the rainforest!)
Quebec (among the best places to go for colonial and history in my opinion)
Nova Scotia (been once and fell in love)
Newfie-Land aka The Rock aka Newfoundland
Toronto (I got all the time, but the history within the city is outstanding)

So yes, I’ve got to come into a lot of money if I clearly want to do all of this, but even if I can’t, it’s the fact that I’ve extended my thoughts out so far as to mentally allow myself to dream about seeing these places. And I believe I will. Even if I can’t see all of them, I’m not going to deny myself the novelty of picturing myself in these places. I’m sure I can get some packaged deal somewhere anyways, right???

So yes, there is a lesson in today’s philosophical post: allow yourself to dream people. In my time spent waiting for transplant, I’ve had a lot of time to spend with myself, which not many people can say. How often do you people spend an afternoon with yourself getting to know what you truly like and who you truly are? Maybe I’m coming across as preachy, but I’ve noticed that the more that I learn about what I truly like and don’t like, the more that I can effectively get rid of the most of the bullshit in my life that comes in from other people. There’s so much bullshit and (channelling Holden Caufield) ‘phoniness’ in this world that it’s made me see that at the end of the day, the only person who can make you happy is yourself. If you can’t make yourself happy, you can’t expect anyone else to. And with that being said, if no one will dream with me, I will allow myself the freedom to dream on my own.

To quote myself, (yes, myself): Dreaming never hurt anyone if it merely inspired them.

So good day, and may your dreams (and your readings) be uninterrupted.

....Which actually leads me to another great observation from the book i'm reading, about reading, that people feel it's ok to interupt you when you're reading because you're not actually doing anything.

And speaking of doing something, I've noticed that when i do things, i get the shakes, so in essence, I should just not do anything that requires physical movement. Ever. Since in doing, i get shakey.

Who woulda thought?

Wednesday, May 13, 2009

Hell Knows No Hunger Like a Woman Who's Had 12 Vials of Blood Taken from Her

So today was my double whammy day: rehab at TGH at 9am, then zooming across the street to Sick Kids for my 11am appt.

Rehab was good. O'Intern didn't show up until 5 minutes before i left *pout* but we shared some extra special smiles so that was great. It's unfortunate that we couldn't spend more time in eachother's company (the way McIntern and i were able to last year), but when I left I made a point to announce as loudly as possibly that i would be there next week *wink wink, nudge nudge, aka SHOW THE FUCK UP*

Had a 6 minute walk. I walked 245 metres, as opposed to 300 back in March. I was gasping and sputtering all over the place like a dying fish by the end of it. I was seen by my co-ordinator and she asked how i was feeling. I told her that i don't feel any different and she asked if this was my new normal. I said yes, and she agreed that this is how i'll most likely be until my transplant comes. She said she was going to bump up my next clinic appt (which has now been moved from June 22, to May 25), and that they were seriously considering bumping my status up on the list, so that makes me happy!! I was glad that she was able to see me as I am now. I had just done leg weights and was gasping and shakey and it was really quite attractive.

Up next we went to Sick Kids across the street. Usually dad and I go out the Gerrard street exit, but as luck had it, it was blocked off and unavailable. We get there and I'm gasping and huffing all over the place, and the only choice we have is to take a maze pattern out to the emergency exit. So not only was i out of breath, i was gasping, i was hot, i was annoyed, i was irritable, and i was hungry. All i wanted to do was sit down, and there was not a damn spot for me to sit.

Finally we make it across to Sick Kids and to clinic. I threw myself down on the spongey green seat and threw my health card on the table. I was in no mood for 'hi how are ya's' at the moment. I wanted to sprawl on the ground and pass out. I did not care.

Eventually i gathered my wits, sanity, and manners and spoke pleasantly to my nurses and everyone. All were happy to see me and lots of catching up was done. I was generally happy to see them as well, though I was hungry, and I knew it would be at least another hour and a half until food was located and consumed. I tried to be patient.

Sometime later a grumpy ("I'm not grumpy I'm just worried. Am I not allowed to be worried?" "Not if you're going to act like a Grinch about it, no") dad and I were whisked away by a student doctor to the back. There she asked questions, took notes, felt me, prodded, listened to the lungs, heart, you name it. At one point she pointed out that i was shakey. I said it's a recent phenom strictly isolated to the philanges. She asked if i felt weak. I lied and said no. She asked if i had an echo recently. I said i get them routinely. Hopefully that ends the heart inquiries. All i wanted was food!

She left. Dad and I waited. I asked dad why he was such a grump again. He said he wasn't a grump, but that he was worried. I said that if his way of expressing worry was to act grumpy than he should keep it to himself, b/c it makes me feel bad and like i don't want to tell him anything. He huffed again. I suggested that he talk to someone about how he felt. He acted offended. He huffed a third time like a magic dragon, but he saw my point.

"Am i not allowed to worry?"
"Yes you are. I'm not going anywhere though so don't worry. These are the cards I was dealt. I can't do anything about it"
*insert huff with fire*

Pretty soon the doc came in, a doc who had seen me as a baby and adored my parents. He asked if my mum was behaving, and inquired about my recent hospital stay. He asked if there had been any male nurses for me and i said no, that i had been placed in a geriatric hospital and was the only patient under the age of 70. My dad shot me a look like i was rude, but the docs all laughed anyways.

I was able to show off my wonderful display of bruises and pushed the idea of a port or picc placement. They are finally seeing and agreeing that these veins weren't made for walking, that blowing's what they'll do...That one of these days these veins are gonna blow all over you.


So yea, the idea to save my arms and time is going to be discussed. Hurray! I said that i've had so much blood taken lately, that it's only fair. And i said it knowing that they'd take a heaping amount today. And they did.

I went to the blood lab after the appt and waited 30 minutes. It felt like a cattle recall, with everyone taking a number and waiting inhumanely in the back. I was #41. When i got there they were on #30. I was starving; my stomach was eating itself alive and i felt shakey and disoriented since, by this point, it was 12:30 and i hadn't eaten since 6:30. Ugh. Finally the lady screamed, "NUMBER FORTY-ONE!!!!" and i was ushered into the little curtained corner. I hoped it would've been fast...I really did....

I waited. And waited. And waited. I sighed, and acted as impatient as possible. And then, the student blood taker came in....

Holy fuck, a student blood taker, on me?? I was laughing in my head i was so distraught at the idea. Admittedly, he was a nice kid, but jesus god did he take his sweet time getting the vials out - all 12 of them. I sat there in disbeleif. Of all the days i was starving to death and envisioning devouring a Whopper it was now, and i had no choice but to wait while they went through what each colour checked, how many i needed, and if you had to do anything special to the vial after it was filled (like shake it), or how much to fill it. There were big vials, small vials, medium was a rainbow, but the only colour i saw was hunger.

He sat down and smiled at me. I smiled at him. "I have very bad veins" i informed him. He reamed the tourniquette as hard as possible on my arm and smiled. I made a face. I was polite enough to direct them to where they'd find a sufficient enough vein to fulfill their demand if they'd only remove the tourniquette before it severed my arm off above my elbow. They did not oblige me. I made another face indicating that I was in intense pain. They did not care.

Instead of using the big ice pick needles that my local blood taking place enjoys using so much, Sick Kids uses those small, sharp nastly little bastards that hurt just as much. They got the needle in in one go ("this vein is spongey and bouncy" the lady informed her student), and i lived through every waking minute and the blood was torturously let out of me.

All 12 vials of it. By the end my vein and arm were on fire. All i wanted was food. I wanted Burger King, and I wanted it badly.

Suffice to say, i was finally released and stumbled to the foodcourt with my dad. I plopped down on a chair and my dad waited in line and got lunch for me. It was the longest wait for food ever it felt. Finally, after what felt like an eternity, the food arrived.

I destroyed that whopper. To say that i ate like a savage and i just didn't care is a gross understatement. Anyone who knows me, knows that i'm the slowest eater in the world, and i took on this Whopper in 4 minutes and it was gone. That, and the fries. Why i didn't consume the bag and the napkins with it remains in question, since i could've.In an unfortunate turn of events -still being hungry- i was waiting at the vending machine for my dad to bring the car around, and was getting a bag of doritos, when my coke fell off the chair it was resting on and spilled all over the floor:( It was full. I was gutted, but all i cared about was getting those doritos.

Hell knows no hunger like a woman who's had 12 vials of blood taken from her, people! It does not know! I became a monster; i saw nothing: no one but food and gluttony. I came home and devoured a chocolate chip muffin and a can of coke, and only now, as i lay on the couch, can i attest to the fact that i truely acted like a pig, but that i plain and simple do not care.

So that's it. Before i go I must make a sad announcement: I just received word that a friend of mine from TGH, Jason, has passed away. He received his double lung tx in July 2008 and was doing great until January of this year, when he took a mysterious turn for the worst. To say I am shocked by his loss is an understatement. Jason was a rockstar and will be greatly missed. He was an inspiration to many and I cannot beleive he is gone. He is in a better place with Kyle and Robert now, who both lost their battles to CF in the winter.

RIP Jason: gone well before your time. You were a rockstar and you are missed. Your family is in my thoughts and prayers. I can only hope you are in a place where suffering is not a factor, and you're running free with your dearest friends.

Breathe Easy, Jason.

Tuesday, May 12, 2009

O’Intern, O’Intern, Wherefore Art Thou Intern?

I’ve had some time to think about O’Intern, since we will be meeting again tomorrow. I’m running through a lot of ‘woulda, coulda, shoulda’ in my head since our impromptu meeting at rehab last week. Since I was not anticipating being graced by his presence, I was not at my best. While it is debatable among some to ‘rightness’ of wearing brown with black (as I was); I also was suffering from prednisone face and i had no make-up on. Being fresh out of the hosp, it was not my intent to look good in any capacity (other than keeping my double chin under wraps), so when I was blessed with the vision of O’Intern at point blank, I’m pretty sure i came off as bitchy.

Woulda coulda shoulda!

I know i gave him a dazzling smile, double chin a-blazin’. He told me eagerly that he’d be here next week (tomorrow, now) and the week after. I assured him I would be too, while secretly debating how right it would be to wear make-up while still feeling like i had a vault of illness strapped to my chest.

I hope I haven’t deterred him. I was just so taken aback by the fact that another intern – a good looking, one –who- pays- attention -to -me – intern, was back.

So i guess the game plan tomorrow will be to do what i can, and ask for his help as much as possible; mention i have a phone that’s never used and could be filled with text messages from him should he get bored, and that i have a facebook account that features me in countless photos looking much better than i currently do. And that i have MSN - should things get that far.

That should suffice.


Monday, May 11, 2009

The plan that never worked

Needless to say my plan to stay up till 4am the other night reading was staunchly squashed when i realized just how difficult it was to read 311 pages in one night.

I got 40 pages read when i realized i couldn't do it. I had to give up. It was painful, and I really wanted to get to page 600, but alas I put the book down -feeling like i had failed - on page 579.

So lastnight, in a spurt of literary euphoria, i got passed not only page 600, but I zoomed right up to page 642 which also happened to be the third and final part of the book. There are now only 192 pages left for me to read. I am excited and incredibly sad, b/c I love this book but i want to move on, it is time...

Remember me with Outlander last summer people? That was beyond saddness.

Anyways, I'm pretty sure the next book in line is Brief Gaudy Hour.

Anywho, I am here. Not really feeling a lot better since getting out of Incarceration Nation but what can you do? I'm officially done prednisone and looking and feeling normal. One thing I did notice this time while being on pred, is that I did not have an appetite increase at all, but I noticed that I ate a lot better and didn't crave things like chips, and pop, and chocolate, and all that. I think b/c when I did have pop or something, it made me so bloated and uncomfortable that all i did was sit like an irritable whale on the couch huffing like a grampus.

So i guess that's good to know. Maybe if i can't have pop post-tx it won't be a bad thing, b/c lately, i havent even felt like having it so...

What else? Today will be my first day back at rehab in weeks. I think i've been gone for about 2-3 weeks since I started feeling so shitty. No one's said anything to me but i know it will be good for me to get back and get a bit more re-conditioned, if that makes any sense.

I'm using O2 a lot more, and i'm noticing how much it helps. Saturday morning i got it in my head to double-and-a-half (yes) a banana chocolate chip muffin recipe, but to convert it into a loaf. Yes. And that's what i did. I made a massive banana loaf for my mum for mothers day, which in the end collapsed in the middle and never really set, which makes me feel awful and embarassed. It doesn't taste bad but still, usually this doesn't happen to me. I'm kind of offended by my culinary disaster. With the rest i made banana chocolate chip muffins, which of course, taste fine. *Sigh* Oh well.

So that's about it. Nothing exciting is happen. I really hope i get my call soon people, so send a thought to the sky and a prayer to the heavens, please and thank-you!!!:)

Friday, May 8, 2009

It feels like such a sinister idea

Today was a very muggy warm day, but not overly so. For the second day in a row I wore my o2 for about 75% of the day (go me!) and i'll be honest, it helps me navigate the house and not get so out of breath. I still get out of breath but it's not horrendously painful or anything. So go me.

My ears have popped - finally! Both of them. Let us rejoice, sing Kumbya and play the piano as loud as possible in celebration. I was right in assuming w/e 'loss' there was only temp and probably a result of dried out sinuses, clogged ears, and weather.

I'm on 15mg of pred. Face has gone down, but stomach is bloated. I want to shit a cannon, and it's not gonna happen, so i took matters into my own hands and downed an exlax (something i have never taken). Anyone with bad lungs can attest to the fact that if you need to shit and it's not happening, it makes breathing that much worse and more uncomfortable. Hopefully this is a one time thing.

I still only feel 20% since leaving the hosp, and that's ok. I know i was and am sick. It has helped me realize that i need to take my time more, wear more O2, slow down, b/c i cant do what i used to, and i accept it. It helps that i've finally knocked my guard down and have let my parents really does help that i'm not hiding the degree to which this affects me anymore.

I have my window wide open. It's gorgeous. Dad cut the grass and the smell of the outside night, fresh cut grass, and mild rain is drifting through. I love it. The sky is pink to the west and navy on the other side. The breeze wafting through my window is warm and it feels like summer. When nights are like this I want nothing more to do than just lay in bed with my window open, with a dull light on, reading straight into the night. I reminds me of last summer when i read Outlander: reading all day long, and staying up till 4am in the darkness of my room. There was something so magical about it that I love. It's not like I have anywhere to go, or anything to do tomorrow either. Tonight is the perfect night to stay inside and finish my book up:) Sure, I have about 250 pages but it can be done:) There's something so bizarrely sinister and alluring about it that I can't quite explain, but i'm completely in love with the idea.

Anyways, i should resume from the pages of my Incarceration Diary, so here's Day 2/3:

May, 4, 2009

Would today be the 2nd or 3rd day of being here? That dilemma always confuses me. I got here Sat afternoon, then there was yesterday, then I guess it's 3 days. Whatever.

Had a better night and sleep. Breakfast hasn't come yet, and i think i'll wait to see what it is before I go to Timmies. More courteous, you know?

I'm starting to feel better. I hate to admit it but the pred is helping. Can pred be my friend? If it stays like this, sure, but it isn't a given. I can now go to the bathroom without gasping which is nice and i can move around on the bed easier, so yay. I'm still tight, but starting to clear my lungs out. Today though, i've only coughed up one thing: it was yellow green. So progress is being made, which is nice.

I'm still having trouble with the fact that everything that comes out of me smells like cat piss. Everything! Gah.

In my 2-3 day stay i've made an observation: when it comes to airway clearance, should i say it? discreetness, us young people are definitely better at the coughing it up and out dealio with more etiquette. Ie: quieter, no hacking wetness where you can hear them do it beside you...and hear it actually come out into the kleenex or w/e it is they use. I dunno, maybe i'm a horrible person. I mean sure we all get loud sometimes but only if we're (ok me), alone. I guess it takes years of practise!

Somehow, in my prednisone induced eating frenzy, I managed to smear Doritos all over my IV dressing - on the inside. How? I'm not quite sure, seeing as it's on my upper right arm, and it's smeared all over the clear white tape too. Impressive.

I'm so glad i brought this journal to keep me sane. I had one with me in Sick Kids when i first got dx at 17, but somehow, between leaving the hosp and arriving home, I lost it. It makes me sad b/c i wrote a lot, most of which was incredibly angry but oh well. It would be nice to go back and read it.

Breakfast just arrived: oatmeal, cheese, muffin. Not bad, except for the fact that I just spilt coffee all over my bed.

Mum just left. I was sat to see her go. Hoping to be out tomorrow. Still not sure what is wrong with me *sigh*. Lots of inflammation, plugs, crap.


I'm going insane in here.

*end of day 2/3*

Thursday, May 7, 2009

A Good Day

I'm feeling better today.

Since leaving the hosp, i feel about 20% better, which is ok. I can navagate the house better, and yes, you'll be thrilled to learn, that i've worn my O2 around the house ALL day. And i can honestly report that it's helped! I did the laundry and it helped by wearing it (i still got out of breath but it wasn't painful), ran the dishwasher, and so forth.

In my prednisone induced euphoria, I ate a whole pot of mac and cheese in sheer celebration. My knees woke me up at 5am so i took two Tylenol 2, which put me to sleep till 10am. Woke up at 10am and the pain was setting in, so I took another 2 Tylenol 2 which helped again...helped so much that i was a little bit high and felt light headed but that's ok. I think my knees are bothering me today b/c it's a little bit humid but that's ok. I will be alright.

Overall, I am much happier today. The pred face has shrunk, i don't feel like i'm going to give birth to a cannon, i'm not bloated or irritable. Overall, I am happy. I've gone some things around the house but have also taken it easy. I've read, blogged, chatted, had some pommegranate green tea, played piano....

That is my one concern: since leaving the hosp my hearing has felt funny. I don't know if the Cetafez IV antibiotic damaged my hearing or not. My doc knows that I've had issues with it in the past and that it's a concern of mine, and she would've told me off the bat if hearing loss would be a result of being on it. She didn't, and everything I've read online mentions nothing about otoxic effects so I think i'm ok. If anything, this 'loss' is temporary. Also, i think i've prob got wax in my ears (sorry, ew), and also, since my sinuses are so dried up, i can't clear them properly which is also making things sound fuzzy. To add to this, is the weather changing, so....I'm sure it's just a bunch of everything coming together to annoy me. It also doesn't help that i'm focusing on it, and thus probably making a bigger deal out of it than is probably worse....but oh well....I think i notice it more since I play piano by ear and found the piano slightly more quiet than usual today....

Again, it's prob just a combo of wax, blocked sinuses, and allergies. Hopefully that will change soon.

So all in all, I'm a happy girl and had a good day!

Wednesday, May 6, 2009

Day 2

May 3, 2009

Day 2

Hospitals are a terrible place to try to get sleep. Didn’t sleep much at all last night. The lady next to me was snoring all night; it was bright in here, yada yada yada.

Had 2 things of Cetafez/Fortaz. Not bad, though my vein is starting to hurt a bit.

It’s 9:07am. Ugh. Breakfast came and it was a debauchery: coffee, some white wheat gruel, and a cinnamon raison piece of bread. While I truly appreciate the effort, I didn’t eat it: I went to Tims and got a bagel and tea. I also had that banana I had saved from last night so that helped.

I’m really shakey. I don’t know if it’s from the Cetafez or if it’s just me. It happens when I walk, and I have to use oxygen when I walk here now. Ugh. Another thing they want me to do here is shower. I don’t know why, but showering here seems to be a total chore. Fuck.

My 3rd nurse, Barb(?), is awesome. She listened to my lungs and said she didn’t hear any airflow in the lower ones, and when I asked if it would be possible that they just don’t work anymore, she said that is most likely the case.

Why, suddenly, do I feel like I’ll be here longer than a few days?? Ugh, I hope not.


Well, a lot has been accomplished since I rose at that ungodly hour. I went by wheelchair to x-ray, then I lazed, texted mum, got a ventolin mask, took meds, then I washed my face and changed, which made me feel better.

So showering may make this incarceration easier? I don’t think I brought enough clothes though, but oh well, all I’m doing is lazying here in bed; don’t really want to go anywhere. When I washed my face I was really out of breath coz I had to take my O2 off. It sucks, but in a weird way, this is showing me that I actually am sick, and that it’s not in my head like I sometimes feel it is.

So far, I feel like I’ve been a very good patient! Go me!


I feel like I’m here for no reason.

I’m not feeling any better; not coughing up anything. Had physio/CPT come in and beat me and it did nothing. My lungs still feel really tight and I’m horrendously out of breathe. That’s what’s frustrating.
So I finally showered, and it left me exhausted. I was huffing and puffing the whole time, and even 20 minutes after. And best of all, I had to sit on a fucking assless commode and was still exhausted. It was awful, and it’s frustrating b/c so far, nothing out of the ordinary is wrong with me! UGH!


Got a new roommate named Maria. She’s about in her 70’s and had fluid drained from around her lungs. Tomorrow she gets it taken out of them.

At first I thought she was weird and gross b/c of how she coughed and vomited all over the place, but now that we’ve spoken a few times she’s very nice. I learned that she speaks 5 languages to my 1, “Canadian”. I gave her my orange juice. She told me I was too young and beautiful to be in here. I told her she was gorgeous. She told me that when I get my tx that I would have a long and beautiful life. She said she would pray for me. It means a lot. She’s a sweet lady; I’m glad I met her.

Anyways the ventolin saline mask has arrived. I thanked my nurse, Miriam, for bringing me a shot of tequila since that’s what it looks like. She laughed.


It’s funny: Maria (being overly religious), told me to pray for 2 things: a transplant, and a boyfriend.

She also told me to ‘not say ‘f’’.

If you provide male interns, I will follow...

And thus, TGH has provided 2 young, fresh interns, one of which, is exceptionally gorgeous.

This year, unlike last year with McIntern, O'Intern (as I shall call him) spotted me from across the room. Of course I show up, sickly, slightly bloated, totally without makeup, hair looking like i got caught in a wind tunnel. I was polite, flirty (but not overly so), and he up front informed me he will be here next week and the week after.

I smiled by biggest chipmunk cheek smile and said, "Oh yeah? So will i!" (with makeup, next time!), so I look forward to it. I couldn't help but notice him spy me as i sat at the back doing absolutely nothing all morning. It was wonderful. I only wish i could've exuded more confidence rather than dwelling on the fact that i could feel my cheeks and double chin swelling from the prednisone.

So yeah, rehab. The physio lady told me i looked awful and not myself, and when i told her i just go out of the hosp she kind of whispered, "Why are you here?" b/c clearly i shouldn't've been. Oh well, i'm glad they saw that i really am ill so that's good.

I'm in such a blah mood since getting out. I'm not elated since i only feel 10% better; i'm irritable, bloated, pissy, frustrated, tired, sore.


(c'est damage!)

I would like a sandwich. What i would not like is for it to go directly to my face and neck.

Tuesday, May 5, 2009


*warning: this is loooooooooong*

I'm home! I've managed to escape! I sent my mum a msg at about lunch time saying i had been given official word that it was ok for me to escape! SO I DID.

I'm done with IV antibitoics, back down to 15 mg pred (face slightly swollen, as i ordered my sister to be 100% honest with me about my appearance), and i will be doing Pulmozyme to break up all the mucus, and la la la. I was given a 2 week script for Suprax but was told to wait about 2 weeks to see how i'm feeling. Basically, i'm not feeling much better, so....Oh well. I'm off to TGH tomorrow for physio but we'll see how i feel. I woke up this morning with excruciating pain in my knees....felt like i have arthritis in my knees all of a sudden. I'm sure it's just a combo of all the IV meds. Basically, it's not that exciting. I went in feeling terrible; left feeling about 10% less terrible. We'll see where this takes me.

So i kept my journal with me when I was in. I can proudly declare that i wrote 30 pages while in, and I'll transcribe as best as I can about my stay, starting with the first night. So lets start now, since I know i was sorely missed by one and all.

Pray tell me people: what did you do in my absence beside pine?

SAT MAY 2, 2009:

Well this is fucking bullshit. Here i am, admitted, into the hosp.

Which is fine, b/c i knew to expect this.

What i didn't expect - firstly - was to be interuppted mid-writing to get an IV put in; and I didn't expect to be put in a room with 2 other (old!) people!

Gah, this isn't Sick Kids. Beleive it or not, I actually miss Sick Kids, b/c at least there I had a private room, Marnie's Lounge, and people my own age. least I have roaming privaleges.


I'm here for a couple of days, which will no doubt be brutaland drive me insane. I anticipate much bordom, as I have no internet. I'll get a TV tomorrow so my sanity will be restored some.

At least I have this journal and 2 books! At least I can read the way I've been watning to so that's good! Mum and dad are great and totally went out of their way to make me feel comfortable. I think it helps that I'm cool with all of it. I knew it was coming so I can't complain (though I still will, why not). THere was no point in me staying home and complainging about how terrible I felt, right??

I really need to go to the bathroom but am afraid to use this one since the lady next to me just spent 10 minutes in there. God, sharing a room with 2 other patients seems so....3rd world and inhumane.

This hosp sucks in comparison to Sick Kids, GR and TGH. They're fucking luxergy compared to this, ugh. This hosp feels unsanitary and old. Maybe I've just been too pampered with my hosp excursions growing up. Not everyone gets private rooms with bathrooms and showers. Clearly, that's the case.

Since last Tues i've had thepleasure of having 6 needles, and countless bruises from them. I told the IV lady here that she may as well just give me a PICC line since my veins won't handle a regular IV for a long period of time, so we'll see how it goes. She looked annoyed when I told her, but upon inspection of my veins she readily agreed they were 'crap'.

Ok, I went to the bathroom and definitely died in the process. The bathroom is 3 ft from my door but for some reason i was so out of breath it was rediculous. I got back to my bed and was shaking b/c I couldn't catch my breath....God, what the fuck am I gonna do the rest of the night??

Well, I put my jammie bottoms on, and got really out of breath again. This is retarded; this is rediculous. Oh well. I am exhausted. I want to sleep but donw want to get up for the bathroom and wash my face...But, for all that, I feel terrible and know that I am at least in the right place. Hopefully, my call comes soon!!

I hope, I hope, I hope.

I wish it was later so i could sleep, but it's still sunny out and feels like the minutes are crawling by and for that, I am present for every one of them. I wish I had the laptop so i could surf the net or bother ppl on MSN or facbeook and Youtube. At least then I'd stop complaining (or you'd think i would; i would still find something to bitch about). Clearly, reading and writing is not sufficient enough to keep me occupied, what with the amount i've already written and it's only my first night here.

At least I have you, oh precious one *purr*.

This is my 6th and a half page(s?). Why am i not reading?

Oh, b/c i think too much.

It's 9:11pm.

An omen.



IV antibiotic of Cetafec has been started. Will get it 3x's a day and will be able to finish it at home. YAY! Hopefully, home on Monday?

It's weird, but i alway sknew i'd end up in the hosp and on IVs at least once before tx, and in a weird, fucked up way, I feel like one of the it's a badge of honour that somehow furthers you along in the waiting game or something. I feel like I can actually say, "Yeah, I was actually really sick before my tx, and I totally deserve it now. I couldn't even wash my face without gasping, so yeah, I've earned this tx."

*end of day one*

Promise tomorrow won't be so long. Hey, no ones forcing you to read it!

Monday, May 4, 2009

From Club Med on an Inspirational Vacation...

It's me.

I did it; I actually frigging did it. I write to you all from the hospital, and this will most likely be short and sweet. I came in on Sat afternoon and have been here since. Am on IV Cetafez/Fortaz 3 txs a day, and so far they make me smell like cat piss. I got 2 massive doses of prednisone through the IV yesterday: 1 40mg, and one economy sized dose of 80mg. You can be sure i freaked out and that i'm inspecting my face as much as humanly possible, b/c my vanity does not escape me even while incarcerated. So far so good, and tonight it was back down to 30mg. Tomorrow i go to 15 i beleive. Will have to check.

Basically, i have a lot of inflammation, plugs, la la la. They don't honestly know what's wrong with me. I'm hoping to get out tomorrow though and sent home on IVs for the rest of the week. We'll see what's up. I'm going insane without the internet that's for sure.

Um, parents are great about it and my nurses are all awesome. I have 2 roomies, and let me say. this is not Sick Kids. Sick Kids is fucking royalty compared to this.

I cannot get onto facebook but saw in my email all my friends who wrote on my wall and commented on my status. Hopefully tomorrow i can write from home!!!

I want to write more but i don't want to be a computer whore. Afterall, I conned my nurse into letting me use the comp in the nurses lounge under her name.

Rest assured many an entry will follow: i brought my journal with me and am writing everything down lest i go insane. Since being here since Sat afternoon i've written about 25 pages (2 sides, single spaced). I have a lot to say.

So that's all for now. Hopefully i get out soon!!! I probably should've never asked about this b/c Lord knows i'll want to be on it more.

Thank god they don't have MSN or facebook, other wise i'd never leave!

GAH. Hope you're all well! Pray I get my tx soon people! WEEEEEEEEEEE!!!!!!!!!!!

*hugs to all*

Friday, May 1, 2009

Another, other dignifying experience

So i went for my IV today - my monthly one. Score one for me, upon learning at my last appt that my Oncology parking pass (they give them to you for parking, the 'oncology' aspect apparnetly means nothing) works on the first floor (b/c i use it at the rehab place), i found myself not only a first floor spot; i found myself a HANDICAPPED first floor spot. Score one for handicapped+oncology parking! Weeeeeeeeeeee! While it was thrilling it still meant that i had to physically walk to the building, which made me want to fucking die, i won't lie. I got in, and was huffing and puffing like i was having a baby and all I wanted to do was crouch somewhere and disappear.

But alas I kept on walking like a zombie...a huffing, feet dragging, purple zombie. First stop was Tims, where i stood in line gasping, while alarmed nurses looked on but didn't inquire about my state of distress.

I made it back to Children's Outpatient (and yes, i'm 23 and i realize no longer a child, but they love me enough to keep me around so i don't complain). 3 pokes and a vein was found; a vein so fully loaded with blood that it spewed like the Hoover dam all over Arlene. In a sick way, it was magical. It was magical in that, when she attemped the 2nd needle, i screamed b/c it hurt. So, this was most likely the celebratory gush of joy and releif: an expression of gratitude for the seizment of pain on behalf of my body.

The IV went well. An hour and 30 and I was done, and sent on my way, complete with a Hannah Montana bandaid of shame (Jess!!). Before I left I couldn't help but note to my nurse Arlene that I had spied a fire exit; an exit much closer to the parking garage than the hospital front entrance, an entrance which would require me literally to go in a giant pointless circle, eventually passing the children's outpatient unit again, but from the outside. She said that since I was huffing and puffing like a grampus that she'd allow me to use it - b/c clearly i have special privaleges above all others in the hospital - and that she'd shut the alarm off so i could sneak outside.

I made it to my car...a horrible, 3 minute journey that ended with me wanting to die in the passengers seat b/c it's so hard to catch my breath. I had no choice but to sit there and pant like a heffer, telling myself to stop shaking, that i wouldn't pass out, and that it would stop at some point. And it did, but that doesn't make the act of attempting to catch your breath any easier or better.

I met my mum for lunch at Williams. The closest i could park was 3 rows away unfortunately, since some 'disabled' person took the only spot at the front of the place like a total prick. Sure, 3 rows away is not far at all, but for someone in my situation it's a marathon. But i met my mum and we walked in, and once again i re-entered the cycle of sitting down, huffing, going purple, wanting to pass out, wanting to hide/explode. I didn't hide it from my mum, she saw it all. When we were done with lunch she told me to wait out front and that she'd pull the car around. How sweet is she! Another dignifying experience: mum pulling the car around for her daughter, to a spot that isn't that far away to begin with.

Oh the joys of lung disease! Rejoice with me people! Send vibes that this ends soon!!

So needless to say, i'm clearly not feeling better, and i plan on calling the hosp tomorrow and going in to seeing if they can temporarily fix me. I just don't care anymore, I cannot do this alone. And i'm happy that my parents know all of this and are on board. I am happy that they are seeing the horrible state of misery that i am in and that there's nothing i can do to make me feel better. Not only can i not breathe, i have pain again but it's not pleurisy. Who the hell knows what it is. I just want some relief. I'd like my transplant even more though! *big grin*

Here's hoping!

Hope you're all well!

OH! And FYI, i'm monitoring my food intake closely b/c of prednisone. So far, after 12 pills, i've had no increase in my hunger, and every time i pass a mirror i study my face extensively for any signs of puffiness. This is how vain I am. You need to understand that. I am a horrible, selfish person sometimes. Oh well!