My Double Lung Transplant

Friday, November 30, 2007

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 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 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:

Monday, November 26, 2007

The Specialness of Lung Problems

Let it snow, Let it snow, Let it snow!

Anyways, let me get to my point of this blog today: the specialness of lung problems. I just went through a good 20 minute panic upon realizing that my nebulizer was potentially broken. I looked under the mouse infested sink for my long-ago bag that i chucked under there in the summer and couldn't find extra tubing. I have no extra cups either and i realized that I was right fucked. So i sat on the floor and I pouted, and I huffed and I puffed and I coughed. Thank-god for my CF-ridden friend Megs for giving me things to do to help with my neb problems, like letting the tubing run air through it to blow out any moisture, and securing my cups to the tubing extra tight. I took it upon myself to rinse out the cups in scalding hot water to get loose any extra chunky salt. And voila! Problem solved! Here i sit, happily nebbing, all thanks to Megan who came to my rescue during my time of respiralogical need. Thank you very much!

What else? We got some snow today. It was so so pretty. What started off as a shitty, rainy day turned into a gorgeous , humungous flake infested day! It snowed heavily with flakes of monstrous proportions around 4:00 and ended about 20 minutes ago. Gotta love it. I let the dogs out and they made themselves busy with eating the snow off the deck. I didn't do too much today. I worked on my paper about Max Weber and his use of structuralism and evolution breifly. I happily distracted myself from it by doing laundry, playing the piano obsessively, jumping around to the best of my ability to "Let the Bodies Hit the Floor" by Drowing Pool, I baked a dozen chocolate chip muffins and ate 3 of them, and then I proceeded to do dishes. Then I turned the Christmas tree lights on (which we put up yesterday yay!) and oggled at it. Then i stood at the window and watched the snowflakes fall.

And then my neb broke:(

So really, you can see that I'm great at distracting myself. It is now 7:27 and i should probably get working. Dancing with the Stars is on at 8. GO MEL B ALL THE WAY!

What else? Did I mention that my doc told me about Melatonin to take for my sleep probs? Well she did and I picked it up and may take some tonight. I am not anticipating sleep probs but I always run into them the night I need to sleep before school. We will see!

Oh yes before I go I need to happily report that MY DAD SAW HOWARD about two weeks ago! WEEEEEEEEEEEEEE!!!!!!!! He is alive and well and happily frozen by now. When my dad saw him he had accidentally woken him up. He opened one eye, stretched, gave my dad a nasty look and moved underneath a leaf to sleep. Oh Howard you have no idea how happy you have made me by deciding to stay. YAY!

Have a good one, peeps!

Thursday, November 22, 2007


Firstly, Happy Thanksgiving to my American friends.

Now back to me. ME ME ME!

Things have been quite rediculous the last week I must say. I had a paper due today first thing. I spent all day Monday reading reading reading, and yesterday was spent writing writing writing. It was temporarily interuppted b/c I had to go my for TB test yesterday. It went well....quite honestly it hurt a little and it bled:( The nurse looked a little alarmed at how much it bled as I'm sure she wasn't expecting it! Either way, I have to go back tomorrow to get the results read (they inject a bubble under your skin, and if the bubble stays or gets bigger, and gets red, it meas you HAVE been exposed to TB. If the bubble shrinks and there is no redness, it means you HAVE NOT been exposed to TB and are A-OK).

The bubble shrunk within a couple of hours but I have a bruise from the bleeding. Overall I am happy that I had normal results!

What else? Yes yes, I recieved my second transplant intinary in the mail last night! It's a little booklet with 2 sheets stapled to the the main page; the first is a consent form I need to fill out if i wish to partake in their survey via email, and the second was a run-down grid of my tests for my evaluation day-to-day. The inside of the booklet had the tests and their times and what they were for, how they would be performed, why I was getting them done, and what special considerations I should do before or after the tests. Overall, I am very pleased with how thorough it is, as it helps my parents see what I will be going through. I am happy to report that NO GASTRO OR RIGHT HEART CATH IS MENTIONED!! I was so worried about those! I was terrified about having my heart catheterized through my neck, and unhappy with the prospect of having a camera thingy shoved up my nose and down my esphagus for 24 hours to see how i digest food.

I do however, still have to collect urine for 24 hours. Oh could be stool samples - AGAIN - like when I had the Adenovirus last year....

What else? I am still having sleep issues:( *boo*. Last night I failed to fall asleep until 5:30 am. I had to wake up at 8 so I could be ready in time for 9:30am to catch the bus for school to hand my paper in. I felt terrible this morning, I was just so tired and my arms wouldn't work right and felt heavy from it all. Surprisingly though I stuck out 3 of my 4 classes. I opted out of my last class b/c my plan was to come home on my break and drive to the last one. However, since the city implemented a new bus system (which is fucking STUPID by the way!) i waited outside in the -5*C weather for a whole frigging hour. Needless to say I froze my ass off and was in no mood to come back to school.

Last night we got our first snow storm! It started as rain, then freezing rain, and then we got snow. Not too much tho, not as much as they originally predicted. Still, it didn't stop me from wishing school to be closed today. There was so much ice frozen to my car that the door was frozen shut and i probably should have called the Jaws of Life to open it up. Scraping the snow and ice off left me so tired and breathless that my dad had to intervene and help. Thanx dad!

Anyways that's about it. I thought i'd update. It's weird....even though I got 3 hours of sleep i feel oddly alert. Either that or i'm going insane.

Friday, November 16, 2007

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.


Thursday, November 15, 2007

More transplanty stuff from yesterday

...The things I forgot to mention yesterday b/c i was simply too lazy to include them.

Well, they listened to my heart and i was instructed to shut the fuck up. Well she didn't say "shut the fuck up" but i was given a look that said, "SHUT UP!". My lungs are so loud and crackly that you can't hear my heart through the stethoscope. Honestly. When i looked at my x-ray from September I had trouble finding my heart in it b/c of all the fluid and scarring in my lungs. I rather feel much like the Grinch where his heart is one size too small. I really had to search...but alas, there it was, a dangly little sac amiss crap infested lungs. Joyous of all joys. Let us sing and be merry.

What else? Yes yes, I waited in the bus terminal for the bus for an hour and a half. I knew I was there early but i didn't really mind. Instead I fed a pigeon doritos and soon i named it Todd. Todd was grey with green feathers around his neck, and 2 white stripes on either sides of his beak. He also had a resident spider crawling across his back. Whenever other pigeons would come near me for food, he would charge at them and chase them away. This made me laugh. He'd come back up to me and wait for me to throw more doritos to him. More and more pigeons flocked and he chased them away. There was a pretty grey and white one and Todd didn't like him much. I refered to him as Bastard. But soon I realized Bastard was crippled b/c his toes were all fat and deformed, and his one foot only had one toe instead of 3.

I felt bad for not feeding him, but Todd would steal w/e I threw b/c he's a needy little fuck.

That's about it for yesterday. Today i felt lazy and unmotivated as I usually do. I slept for 10 hours and was still tired. I missed 2 of my 4 classes b/c my body felt drained of it's resources aka VAST AMOUNTS OF BLOOD. I felt that had I fallen over at any point during the day, I would probably never get up. I'd just lay there and be squashed.

That's about it. I am done for now.

Bon soir!

Wednesday, November 14, 2007

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!!!

Monday, November 12, 2007

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,

Saturday, November 10, 2007

Success (Even in the smallest sense)

I have a huge zit.

Located on the Island of Pore, to the right of my chin, it is a massive swelling surrounded by a freckle, with a red peak in the center. It could erupt at any time with in the next couple of days. So far it has been smashed, squished, and scratched unintentionally. No coverup is present. Surrounding area has been cleansed and evcuated of any cosmetics.

I ran out of Advair. Advair is my asthma puffer that I take twice a day - morning and night - and I ran out this morning. I thought I had enough until tomorrow but evidently not. I called in the pharmacist today to order all the meds i need but my dad was too busy to pick them up. I will have to wait till tomorrow. For the mean time, I will survive off Ventalin and hope to God that i don't suffocate in my sleep.

So this thus makes it 4 out of 8 meds I am out of. I ran out of Zithro last Friday, so b/c i havent taken it in over a week, i'm all phlegmy and all that nice stuff. I am not yet out of Singulare. I am out of Advair as previously stated, and Spiriva as of Friday or something. Sprivia is another inhaled med. I'm just in great shape aren't I? A regular rock star with a shit memory. Oh well. I am happy anyways.

Anyways, in regards to my title name, I have seen success today! Throughout the day i have relaxed, and as soon as my parents left for their Fondue Party (how's 70's eh?) I hit the books and am almost done the book for my paper! On top of that, I am actually retaining and understanding everything they are talking about. YAY! You know how sometimes you can be reading but you realize you're just looking at the words and not taking in what the author is actually talking about? Nope, not my problem this time! I only have 70 pages left to read and I hope that I can finish tonight, and get back to working on my paper.


Hope your weekend finds you well.
Love love love,

Friday, November 9, 2007

Gonna Blog about This...

Holy schnikies it's been a while since i've blogged. Well, I'm mildly past my enraged state from before so I am choosing not to mention it any further than..........this.

Today I went to get my Gamma. All was relatively normal. I slept in b/c i'm lazy and got there at about 11am. The clinic was busy so I had to wait but that's ok b/c i love my nurses. Had it been any other clinic or hospital I probably would have had a fit and started throwing things, but instead i listened to my iPod and read Cosmo and UsWeekly. It was good. There was a lot info about men...and well, i love men so that was fine with me. I only had one poke and the IV went in, although towards the end of my IV i made the mistake of moving my backpack to get something out of it, and when i went to put it back down i dropped in on the IV tubing and it nearly pulled it out of my arm. It hurt just a little bit.

So I left and got McDonalds afterwards. I havent been there in eons. I got a happy meal and the toy was some bug/bee thing from Bee Movie. It's mildly entertaining and Zoey sure loves it. I drove home eating my hamburger, dancing to my iPod in my car. I don't care if ppl were watching, i felt happy. They can all go to hell.

I'm feeling good immune system wise but les lungs feel like the cream of the crap. Since it's cold now i feel shitty. Putting my coat on leaves me breathless so i have to go at Really-Old-People's Pace. My one coat feels like burbur/a potato sack and it's really heavy when i put it on. Today i whiped it on, forgetting my crappy state and my arms tingled for about 5 minutes and i stood and caught my breath. It really sucks.

Back to the news i said i wouldn't talk prof wrote me back and we are gonna meet on Monday. That's good b/c i have to hand a paper in that day anyway. Can you beleive it, I havent done any hw in 3 days. Shit.

Either way, i will tell her all about what's going on with me health wise. I think i need to inform her so she doesn't think i'm a complete idiot. I'm not!

Anywho, I am gonna go to bed maybe.

Monday, November 5, 2007

For Fuck's Sake

I am writing this through tears.

I havent cried this hard since I found out I need a tx. For fucks sake, I just want to sit in a hole and burn.

Remember how last week i studied my ass off (literally) for my midterms? Well i got my anthro one back, and i failed I failed by 5% - 5 measly 5%. And here I am, a distraught, wrecking ball of saddness that cannot be controlled.

I wrote my prof telling her that i'd be ectatic with just a 50% - all i want is a pass, and i hope she accepts it. I'm not asking for 80%, i'm not asking for her soul, I am just asking for a pass. I studied so hard. So, so hard, and this is what it gets me. Nothing. I cannot handle this anymore. Can. Not. Simply. Close. To. Giving. Up.

But I won't. I have one more mark to get back, and a paper due this Thurs that I am determined to kick ass on. But for now I am dealing with the building blocks of my confidence scattered on the floor. I only hope i can put them back together.

I hope i don't need to play the sick card on this one, b/c I am tempted to. :(

Through horrendous tears of saddness and pain,

Sunday, November 4, 2007

Fall Back, Spring Forward

Welp, we officially turned our clocks back this morning at 2am, which would thus make it 1am. So far, I still have failed to turn my clock back. I just can't be bothered. Maybe some time today...

I went out to an event last night called Kink. It was an event and an experience to say the least. It was informative, shocking, and it required ppl to dress up. Krystal and I sported corsets, and i had mine on a little tight. Lets just say that crappy lungs and uber-tight corsets do not mix. I could barely breathe. The thing started around 8:30/9ish, and I stayed until 12:30. Around 11:30 my ribs started hurting. It was difficult to sit, what with my inability it to slouch and all. I felt much like the Tin Man from the Wizard of Oz. I'm pretty certain that had I experienced the pleasure of falling over, I would have never gotten up. Nope, no way, not gonna happen. I would have just flopped around like a fish and eventually been stepped on.

Ass is still partially broken.

In other news, the east is being hit by Noel (is it No-well, like Santa, or No-wool, like 'Joel' w. an N instead of J? I've heard them prounoucned both ways.) Either way, my dear dear friend Caitlin is in Mass and I hope you're ok! I heard that power got knocked out in parts of it, and I got a msg from her this morning needing to talk to me ASAP. I hope you're alright, child!

There is not much to report in other aspects of my life. Heidi, my beloved cat, celebrated her 14th birthday on Fri, Nov. 2nd! I can't beleive it - 14 beautiful years of Heidi Speidi.
Mummy loves you!
Have a great day, peeps!

Friday, November 2, 2007


I am here with sad news. On Oct, 31, 2007, someone I have only spoken to a couple of times passed away. His name was Mike and he had CF. He was transplanted May 22, 2007 and was definately living his life to the fullest. He was amongst a handful of people I speak to who had lung transplants this year.

To say that I am shocked and gutted is putting it mildly. I was initially informed of this last night from my friend Kayla, but I never put two and two together until I officially read it over at The Board.

Mike, I don't know what to say. We never spoke directly but i followed your caringbridge blog and i posted a lot, cheering you on during your tx recovery. I followed along with everyone the day you were transplanted, as we waited for the good news that all was well and that your time to begin living life had finally come. Too bad it was cut short.

You were an inspiration, and a wonderful human being. I can only hope and pray that wherever you are now, you are safe from pain and harm, and that you're watching over Katy.

Breathe easy, Mike.

Thursday, November 1, 2007


Not quite sure what to title this blog, quite honestly. I wrote 2 midterms today and they went well. I don't have much else to report quite honestly.

On the tx front, not much to report. Am refraining from filling in the forms from the thing i got in the mail, don't know why. I got into an argument with my mum tonight over how many vegetables I ate, and i screamed that she doesn't eat any either, and she screamed back that she does and that I just don't see it.

I am choosing not to believe her.

She also went on to tell me how she doesn't like big carrots from the ground. Apparently, those are vastly different from small ones. from the ground.

Weird. Unproductive. And boring.

I have been MIA lately, b/c i've been hijacked and stolen and taken to the mysterious, rarely visted island of Studying. It's not a place i visit often, and i'll be damned if i ever go back soon. I wrote 2 midterms today - count 'em, two, back to back. History of Anthropological Thought and Prehistory of Canadian Native Peoples. I fell asleep last night (couldn't fall asleep for the longest time - fucking hate sleep problems) and dreamt about Clovis points. It was terrible, I couldn't stop thinking either. I hate my brain sometimes. It never shuts up.

As a result of all this studying, one can imagine i've spent a lot of umpresidented time sitting square on my ass. Bizarrely, i have thus pulled off the incredibly hard task of BRUISING MY TAILBONE W/O ANY ACCIDENT. No, I didn't fall on ice, or get hit with something, no, i've just been lazy and bruised my tailbone from so much sitting. It hurts. It hurts a lot, so much so I've been taking Motrin. Oh well.....

Lungs feel like crap. Wanted to pass out today from walking around so much. Honestly, fuck. I hate walking. I want wheels attached to my feet.