My Double Lung Transplant

Monday, March 31, 2008

They tried to make me go to rehab....

...So I had to goooooooo gooooooooo goooooooooo.

I know those aren't the actual lyrics but in my song they are. So yes yes, today was my first day of pulmo rehab and it wasn't too bad. It started off in a rageful state, when i glided gracefully into the parking lot and couldn't find a spot. This rehab place is actually mainly meant for those who are coveted members of the Wrinkle Society....old people....geriatrics....what have you. Well they can't park worth shit and it really pissed me off. Cars were parked with their asses hanging out of spots, half way between the lines. Some cars went over the separation lines; other people just took it upon themselves to park side-ways. For the creative, they made their own spots.

So needless to say, wanting to park close became unrealistic and i sat in my car and called up my mum, where I swore effortlessly into the phone to her for about 3 minutes and she sat at the other end and laughed. Anyways I made my way in and sat in a confrence room as 9 other 'newbies' filled up the place.

I gawked around and studied people. I was the only one under the age of 40 (unlike the eye docs on Friday when i was the only one under 75). I looked like a new baby...a gem...sparkling amist the illness that riddles us all. We all introduced ourselves and said why we were there. About 3 people had Pulmonary Fibrosis, a couple had COPD, Emphasyma (sp?) and Alpha 1 something. Alas, I was the only one with Bronchiectasis.

The cheese stands alone.

Anyways, all we did was fill out forms and someone joked about having a smoke break at some point. We all laughed and started coughing. About 6 of us were waiting for transplant (at some point). 2 people were from my city and we discussed maybe carpooling once the next two weeks of individual assessment is over.

April 14th rehab starts 5 days a week and goes till the middle of May. In all it's gonna last about 8 weeks. One day (they are not full days mind you - they last a couple of hours) will be walking, another day will be spent in the pool, another will be in the gym, and I'm not sure what the others will be full of. I know weights are involved. I'll update to see how it goes.

Erm...that's about it. I got my monstrous paper completed and handed in. Tomorrow is my last day of class! I have to miss thursday (my actual last day of class) b/c of rehab but that's ok, i can talk to my profs tomorrow and get final exam info. That's about it. It's warming up and the snow is melting.

I'm sorry this wasn't more entertaining. I shall catch you lot later!

Saturday, March 29, 2008

Earth Hour Hazards

So it's Earth Hour. Right this minute - as we speak, and yes, I am participating. Sure I'm writing my blog but last time I checked all you had to do for Earth Hour was turn your lights off - not your computer!

So blog I shall.

Went to Beka's bridal shower today. It was miraculous. It was good to see some people who I knew, and fun to meet the people I don't. I am currently failing to work on my paper that's due tomorrow. I have 4 pages written, but for the most part i am writing down research stuff so I guess it counts.

Feeling like my usual shitty self. Very out of breath today. It's nice though that when I get to the top of the stairs after I feed my cats (b/c they're fed in the basement), I don't need to hide my out-of-breathness and utter respiratory suckness from my parents. My dad seemed kinda baffled and shocked over it today but w/e. Nothing I can do. Oh wait, "put on oxygen". My parents seem to think that solves everything I guess.

Maybe if i put on oxygen my paper will get done. Hmm...interesting.

Anyways, back to the point of this blog - Earth Hour Hazards. Yes, they exist, and of course I experienced one for the first ever global...event. My house is in darkness ( i admit next to the tiny lamp on in the corner of my desk). We have candles lit and it's truely amazing to see every house (next to some stupid neighbours who won't part-take, one neighbour in particular whose fat ass i can see bent over in their living room as they paint their wall) on my street in total darkness. It's amazing. It truely is. Well anyways, I had to go to the bathroom, so I walked in, in total darkness, kind of afraid.

A part of me wondered if an alligator would surge up the toilet and bite me. Another part wondered if it would be a shark, and the other half thought maybe it would be a snake instead. And it was as i was contemplating which reptile/sea creature would essentially be the one responsible for my disappearance, I sat down, and fell in the toilet.

I guess when i lifted the lid, I also lifted the seat. But b/c i couldn't see that I had done that, I fell in. I sincerely hope that whoever used the toilet last flushed.

That's about it.
Hope you all took part in Earth Hour!

Friday, March 28, 2008

Funny Funny

I admit that when i saw this I laughed out loud and proceeded to have an extensive coughing fit b/c it's true. Regardless of what walk of lung disease you come from, I think you can appreciate that acknowledging the fact that your cough sounds completely disgusting is amongst the first steps in accepting your crappy state.

And here's a picture of me attacking Katey. Just b/c.

Back to my sex paper I go.

Wednesday, March 26, 2008

Confessions of a Lunatic

The world has ended: I can't get onto Facebook.

Enough mindless babble. I need to confess something. I confessed it to Caitlin; I may as well confess it here.

I have all these crazy thoughts running through my head about being listed. It's consuming me. I'm being eaten by transplant.

I want to be listed, but i'm afraid. I'm afraid that I'll get it and I'll die, b/c the timing wasn't right. And i don't want to die - I'd feel like i got fucked and it was all my fault. B/c if it wasn't meant to be (the tx timing - like right now, like today) and it wasn't God's time, then He'll off and kill me b/c it wasn't my time to get it, and that I fucked up His Holy plan or something.

Fuck. I fucking hate thinking.

Actually, I just downloaded "You Can Count on Me" by Default. "..I'm here for you so don't forget you can/ Count on me coz I will carry you till you carry on/Anytime you need someone/Somebody strong to lean on/Well you can count on me to hold you till that feeling is gone/Anytime you fall apart/You can hide here in my arms/And you can count on me to hold you till that feeling is gone"

Thanks, Default.

Anyways, now that I've had time to go crazy my head is clear. Thank you confession land, and Default.

I do beleive it is my time to be listed, but I hope and pray that the next time i can be afforded the luxery to feel like my regular shitty self when i see my tx doctors; not some illusion that's been provided courtesy of nerves and adreneline.

Oh thoughts and brain, you slay me with your monkey babble.

*turns to Default*

"I'm here for you so don't can count on me to hold you till this feeling is gone"

Aaaaaaaaaand scene.

Tuesday, March 25, 2008

"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 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.

Monday, March 24, 2008

Happy Belated Easter

I know, I know. I'm a horrible person for completely abandoning you guys for a week and 2 days. I'm sorry; I've been busy in a little institution called 'university'. Have you heard of it?'s a busy place. Thankfully, there's 2 more weeks of class left then adios, 'summer' is here.

I spent yesterday, Easter Sunday, frantically typing up notes so I could pass the book along to someone else. The book is for anthro and it's called Biology Unmoored. My task was to read 3 - read it, 3 - chapters, type the notes up, send them to 2 people, then pass the book to someone else so they could do the same. Sounds simple doesn't it? Well, it was a good idea, and is a good idea, except for some reason, I took all the incredibly long chapters (each chapter I swear to god was roughly 35 pages) and it left me feeling bitter, frustrated, and full of rage. It was so fucking bored, I swear to god I took so many notes I have Carpel-Tunnel now.

I fucking hate this book.

Anyways, anger, bitterness, resentment aside, I finished, and now I'm about to begin work on my 15 page paper that's due on Sunday. I also have a midterm on Thurs and will spend Weds studying for it. Oy. yes, yesterday was Easter Sunday. Pretty standard. Had nana and papa over, and we - or rather, they, and mum - watched golf, as my sister, dad and I sat there like Zombies. At one point, my nana announced that she saw an alligator 'with spikes on its head' emerge from the water on the golf course. This then launched the family into a debate over what the difference between alligators and crocodiles on. My nana ended the discussion by informing us that alligators kill people.

There were 2 more outlandish statements made by my nana and papa at yesterdays Easter festivities to add to the Already Existing Book of Outlandish Statements Previously Made by Nana and Papa. #2 outlandish statement came courtesy of Nana, when she looked at me and announced publically that I've gained weight. Out of nowhere....and just as quickly as she announced it she went back to talking about alligators 'with spikes on [their] heads'.

#3 outlandish statement came from Papa, when my cat Zoey emerged from her cave underneath the couch. She crawled out, looking tired and annoyed as she always does, and she made a big display of stretching. My papa stared at her and declared, "She's a hermaphrodite".

So um....yeah....

1)alligators 'with spikes on [their] heads' apparently live on golf courses and eat people
2)i've gained weight, and evidently not in a nice way
3)my cat's a hermaphrodite

So um.....yaaaaaaaaaay! Happy Easter to us all!

What else? Well my nana just called wishing me luck tomorrow for my appt at the tx center tomorrow. I told her thanks and that i'd call her when mum and I get home. I have not really spoken about it really b/c i'm superstious and hate fucking things up. So this is it, no more talk.

That's it people, Happy Belated Easter, Happy Belated Spring, Happy Belated everything!

I wanted to add this link for you to check out. I will explain it first. If's called "The Spoon Theory". Read it, and you will understand a little better about what life with a chronic illness and lack of energy is like a little better. The person who created this is a fucking genius. If you are a fellow Sickie like myself, you most likely have heard of this (there's a group on facebook too). Enjoy!

Saturday, March 15, 2008

Back in Action

Well I received a wonderful call today informing me that my computer was ready and fixed, completely virus free! The only concerning issue was the memory so i had it replaced. To prevent my lungs from exploding I asked a store worker to kindly carry my comp to my car and he obliged. I am thrilled to report that I am writing on my comp now!

Erm what else? Me thinks we're getting sick again - or rather, are still sick with aspergillus. Honestly, I'm a respirological mess so who the hell knows what's wrong with me. Did i post that I botched my breathing test on Monday? I think I did. I think all this oxygen depriviation is damaging my brain. Maybe i should just sleep forever to prevent damage. Ugh, I'm talking nonsence.

Either way, I feel like utter shit to be quite honest. I wanted to die vaccuming my room. I went over a spot 3 times and had to stop. So i put the O2 on and only with the aid of that was I able to finish. I go back to TGH on the 25th and I sincerely hope that they list me b/c I am really starting to feel like absolute shit all the time now. I'm exhausted again and it sucks. I just want to cry b/c I feel like I"m going no where.

Speaking of going nowhere - what to do after uni? That's my biggest dilemma (next to my health, silly me). I don't know what I will do career-wise. I am confident i will find a job, I know that, but still, I can't help but feel the sense of utter fucked-ness as I think about money and the future. Ugh...I hate being frugal! What else? Oh yea I don't even have a job for the summer yet! Oh well....Fuck.

Fuck it all, right?

News to report? friend Grant (aptly named Grantual by me) ran a 5 k race on Saturday. Congrats to you, Grant. For those who don't know, Grant had a double lung tx almost 8 years ago. This is what can happen ppl!

Spoke to Alice today. She's doing well. Her boobs are numb from the incision but her lung function is 97%! I'm jealous! Alice's blog got nominated for some blog award. Why the hell wasn't mine? I'm insanely jealous.

Kayla is doing well. I saw some of her incision pics on facebook. They look good - painful, but good. Havent spoken to her directly other than some wall posts on Facebook.

The world is going on accordingly. The snow is melting and it's warming up. I feel like shit but at least spring is coming! Hopefully I will see Howard soon!

That's all for now.

Thursday, March 13, 2008


Well, my computer decided to have a stroke yesterday so I have to take it in - AGAIN - tomorrow to see what can be done. Beautiful. Amazing. Wonderful. Extraordinary. Thank you for crapping out yet again when I had a take home assignment due today. I'm truely blessed to have you in my life.

Went to that Asthma/You Can't Breathe Right clinic and got PFTs done for the millionth time since last year. Even though I again botched the results by taking my Advair and Spirivia b/c the test (I wondered if they were gonna do them...i just never called to ask partly b/c I'm useless) I was informed that yes, they would be happening. And even after my Advair and Spiriva had been taken, a mere 2 hours later my PFTs came out a whopping 27%. Even more laughable, was after I was given 2 puffs of ventolin, I was still at 27%. So, um.....yaaaaaaaaaaaaaaay.

I was given a new device called an Acapella Choice, which is pretty much the new version of that ugly PEP i used to do. It lookes like a mini handheld vacumme. I have to go back Monday to be taught how to use it. You exhale into it and it vibrates and your lungs do too. It's pretty rightous.

Errmmmmm what else? Yes yes, when I had my take home midterm all typed up today (I am using my mum's laptop) I realized that I would have to hook my printer up to someting. Since this lappy has never come into contact with a printer, I had to use my sisters. And as I was printing it ran out of in on the second last page, so a page of the assignment, the bibliography, and the title page, are printed in blue. Again, yaaaaaaaaay.

Please find solace in knowing that my computer this time afforded me the opportunity to back up files, pictures, and songs this time. Me thinks it's more of a hardware prob than a virus. Lets hope. So tomorrow I'm taking my weak self over to the place to get it fixed. Hopefully I don't drop this massive peice of machinery as I carry it uselessly into the store.

Tuesday, March 11, 2008


Welp tomorrow I begin this new fangled RT/Asthma clinic business, and I fully intend on being incooperative and moody...maybe even a little mean and childish. We'll see how I feel.

I realized tonight, upon sitting here that they may vary well do their 'tests' on me. But of course they didn't tell me that! So I guess i have to ring them up tomorrow and ask if i'll be getting PFTs and if I should take my meds. Either way they'll think I'm a tard; a)b/c I'm calling to ask, and b) it'll seem that I don't know what's actually going on - which is true - but I guess we will have to see.

I could not fall asleeop until 4am this morning. Yaaaaaay. I probably have to go to bed soon me thinks if I want to get 10 hours of sleep (from now until 8am). My appt is at 10 which doens't afford me much time to dick around tomorrow morning.

Other than that I don't have much else to report. I'm probably making this appt out to be much worse than it is...but I think if you were constantly being run through medical test after medical test, knowing full-well that you've recently done them allllllllllllll, you'd be a little irked too.

That's all for now. Night night.

Saturday, March 8, 2008

Still no word

Still no word about how to treat this Aspergillus dealio - so it still rages on the inside. My lungs are probably rotting from the infection. Oh well.

Got my regular IV yesterday. 3 tries and 2 hours later the IV Team finally found a vein (yes, IV Team - they are real!) The IV Team lady, Helen, acts grumpy and like she doesn't give a shit but i know she likes me. She told me that if the nurses didn't try so hard, they'd tell my docs to start looking into getting me on a list to get a port in place. A port is a perminent catheter like thing in your chest cavity that can always been accessed for an IV or blood work at any time. It is ideal for people like myself who always have blood taken and get IVs. However, there has been a long debate about me+port b/c my immunologist at Sick Kids are against it while everyone is for it. To be honest, I am in favour for it. While not cosmetically appealing, it's practical and would save me a lot of pain and time. The next time I go to my immunologist I will mention this. Maybe I should start crying too.

Helen explained to me that people with immune system problems don't respond well to ports sometimes b/c the skin breaks down in the area and it's not a pretty sight. Regardless, I will keep pushing until they find a better way to deal with this. Helen told me my veins are 'horrible' and that it's high time something else gets done. However, the methods of placing IVs has advanced to the creation of numbing cream to numb the area, so that's kind of nice. It's a topical cream they put on the skin for about 10 minutes and it numbs the skin. It feels the same way your cheek does when you get a cavity filled. You know how when you touch your cheek with your hand, and your to your hand, your cheek feels plastic-y and you can dig your nail into it and feel the muscle and everything squish? That's what it feels like.

Currently I'm watching Titanic. I love this movie. Off-topic, but completely worth mentioning.

Today we're getting the "Biggest Snowstorm of the Season". About 30cm has fallen (6 inches). The snowbanks at the ends of our driveways are 6 feet high. It's rediculous. I hope this is the last of it b/c i'm banking on wearing sandles for Easter!

Tuesday I have my meeting with the Asthma Clinic/Respiratory Therapist/Whoever-the-hell-else they're making me see. I'm to be given manal physio (where they beat you) and some device called Acapella. They said my appt will be over an hour and a half. Fuck. I am determined to be miserable and unpleasant. I will let you know how that goes.

Thursday (the one we just had) i was getting ready to go to class when my car wouldn't start. I tried and tried and it wouldn't start. My parents were away in Mexico and getting back that night. Turns out the starter died which sucks, but at least it's fixed now and I have my car back. Weds night my car got stuck at the end of the driveway from the other snowstorm we got. There was so much snow that my car wasn't even on solid ground - it was literally hanging over the edge of the driveway on the snow. This winter has been so eventful my god...

That's about it for my gabbing. I've been useless and lazy this weekend for school. I must get back to it b/c the last week of March is busy busy busy for me.

Buh-bye for now.,

P.S. Turn your clocks one hour ahead tonight!

Tuesday, March 4, 2008


Where oh where has the Blog Blogess gone? Oh where oh where could she be????????

Me? I've been snatched up University and senteneced to days on end of school work, multi-paged assignments, and midterms. And just when one finishes, another begins. I've had 2 midterms in the last 2 weeks, 2 assignments, and got another take-home midterm handed to me to complete by next Thurs. Today i had an 8 paged paper was single space b/c if it was double it would have been 16. Soooooooo time consuming I spent 2 solid days on it. I hope my work is justified with a good mark!

Right now I am doing course selection for the fall. It's kind of bittersweet. Usually it's a huge pain in the ass but tonight, as I sit here, it's kind of sad knowing that in a year's time my university career will be coming to a close...My sister told me to take some courses that will benefit me and I will do just that. It wouldn't hurt to go see a Guidance Councelor either to make sure that I havent fucked myself.

It's weird though, b/c usually you have specific courses that you have to take in order to graduate from your program...but for 4th year there's 1. I feel lost. Like an abandoned child in the mall with nowhere to go and no one's hand to hold. I will make it through.

Welp, you may recall that I got a letter in the mail from a local center, and that the wait time was 9 months and how i was uber pissed? Well, I got a call from them yesterday and long story short, there was an opening and they wanted to take me. Great; cool - except that it starts NEXT Monday and is 8 weeks every Monday and Thurday afternoon for 2 hours. Well shit, i have class all day Thurs and it's a little late to rearrange my schedule and exams (with like, 3 weeks of classes left) so I'm not doing the rehab part. However, they DO want me to get a respiratory therapist (RT) and get manual physio (when they beat you) AND see an asthma clinic AND get ANOTHER RESPIROLOGIST. Oh yes, lets not forget that we'll have a fun little bit of "work up" tests which I have already completed at least a half dozen times since last year.

That's why i'm incredibly pissed off. I don't know WHY I need another respirologist when i already HAVE one in another city, and I don't know WHY I need another asthma doctor when I already HAVE one and I don't know WHY I need these 'work up' test since i've already them - RECENTLY!

I have a good idea of what this little 'work up' will be: PFTs, exercise test, ABG's. NO THANK YOU. I swear to god if i have to get an ABG i'm screaming like a 3 year old and vomitting on someone. And then I'll cry and make them feel bad for hurting me.

Just like any mature 22 year old would do.

*PS - I'm still sick with Aspergillus