My Double Lung Transplant

Wednesday, July 30, 2008

It's all pretty bullshit

The last 3 days have been horrible. Absolutely dreadful, completely horrible, and riddled with pain. I woke up Monday morning with terrible soreness in my chest, like an infection was brewing much like coffee in a pot. I didn't think much of it, but i remember feeling the old wickets of my ribs were rusty like old hinges, and breathing in was a numbing effort. It was bad enough that I mentioned it at physio and they said it's common with bronchiectasis, and there isn't much to do for it but take Motrin (or get higher than fuck) and take it easy. They suggested it could be pleurisy. Joy.

Yesterday I woke up feeling like I got shot. The pain had grown expenentially and it even hurt to extend my right arm infront of me. It wasn't muscle pain, b/c i could touch my right side (where the pain is) and from the exterior, i felt fine. It was internally that it hurt. It's from above my right boob, under my arm, and then in my back shoulder. To breathe in even lightly, to sneeze, to laugh, to yawn, it hurts and stings. Much like when a firework goes off: it starts off in a single area, and then explodes and spreads and rips through any surrounding area. That it was it feels like. I'm assuming it's fairly similar to being shot. And it sucks.

I woke up today still feeling like i've been shot, if not a little better. I had clinic and I went, and found out a lot more than i bargained for. Firstly, i mentioned my terrible pain (which as of now, has surpassed the sensation of feeling like i've been shot and has taken on the feeling of being shot with a musket ball). They said it could be pleuisy so after the appt i was sent down for an xray. I hope they call tomorrow to tell me what the hell it is they saw! Then! Things went in another direction, to that stupid fucking esphoageal test i had 2 weeks ago (the one that made me choke and gag, and cough and cry and vomit all over everyone). I didn't just fail it: I failed it ROYALLY. Apparently, it's so bad that i can't even swallow.

Nope, no lie. When you swallow your throat goes through a succession of waves, but with me that apparently doesn't happen (which i find to be BS since i eat and i put on weight and im fine so obviously i'm swallowing!). Apparently with me it must get stuck and slides down, which puts me at risk to asperating food into my lungs post tx (which can lead to rejection, not good). So they're informing me of this, and they mention the only way of treating is is to put in a FEEDING TUBE (they didn't say for how long) and didn't explain any further really (b/c they don't have answers until i meet with some GI specialist) b/c they saw me trying to control myself from slipping into a fit of rage and shrieking like a banshee, attempting to stab and kill people.

I brought the idea of esphoagus tx to the table, which apparently has never been done and i offered to be the first.

NOT BEING ABLE TO SWALLOW?! ARE YOU SHITTING ME?! I promptly went downstairs and ate a bagel just to prove that I could. So we'll see how it goes. I'm not as outraged as i was; i had the opportunity to sleep it off on the bus, as i slid sideways to the person beside me with my mouth wide open making strange sounds. It's not so bad but it still sucks. And i'm still in a lot of pain in the lungular regions. And it sucks.

And i've been listed for 3 months as of yesterday, and that is all.

Saturday, July 26, 2008

Transplant is....

..a lot like a storm warning: it's either imminent or occuring. Which is why i get pissed off when ppl hear i'm waiting for a transplant, and they ask me time and time again if i know when it will be, if i've heard word of when it will be, or if i have any general inclination as to when the deed will get done. Well i don't; i have no notions, no nothing, so shut the fuck up. I don't get too agitated when random people ask, or ppl who have just found out that i need one ask. It's the people who know me well enough - know the details - who gives me the impression that they think the knowlege of transplant is like some magical little box. I dunno. Oh well.

The last 2 days i've felt iffy. Emotionally like a bush woman, impatient and not wanting to be bothered by anyone or anything. I dunno...I just want things to progress but i have no control over that as i've said. Oh well. Today i felt terrible, and it was Jess's bridal shower and i helped with it, and it was great but holy crap am i tired and exhausted. My back ached something awful all day, my chest was heavy with crap and i couldn't breathe worth crap. I was so full of stuff that when i was driving home i coughed, and phelgm just came out all over me. I had to be careful all day b/c if i bent over too much the urge to cough would consume me, and phlegm would just pour out of me. No lie. I was so fed up by coughing and spatting little phlegmlettes over myself that by the time i got home, i sat in my car in the driveway and swore that i was fed up with this fucking humiliating disease.

Now that i'm back to taking the bus to TO my embarassment regarding public use of o2 has crawled back into my system. I don't bring my cart but rather stow my tank in a backpack. On Weds on my way to the bus stop, my backpack was knocked over in the car and the tank began to scream. Anyone who uses liquid O2 knows that if it tips it screams and then it smokes. i waited for the bus outside, I stood beside 2 people my age, and i saw them casting funny looks at my bag as it rested on the sidewalk. Sure enough, it began to smoke from it's little tumble from it's car seat, and i'm sure the people were wondering what in fuck's name i had in my bag. So i decided just not to look at them.

My dad and mum don't understand what i'm so embarassed about. After all, it's a 'medical' reason for why i need oxygen, and it's nothing that i can help, and i told them that they seem to forget that i'm 22 and not 80 and therefore wearing and needing oxygen at this stage in life isn't a fashion statement i want to be quick to make. I'd honestly rather suffer and pass out from o2 deprevation than be seen by some random person puffing on tank. Honest to God. I am a horrible person.


Either way, i'm a little better now. I almost had a melt down as all of my medical issues came to the surface of my brain lastnight and i realized all that is 'wrong' with me; all that sets me aside and brands me as a 'freak'. I don't usually entertain this mentality, trust me, but when u sit down and actually think about all that's 'wrong' with you healthwise, it's daunting and frightening and damn-well angering. Makes me wonder if i committed murder in my last life or something. Something terrible must have been done in order to have this feat bestowed on me, b/c god knows it wasn't on my list- of -things -to -have- in -my -next- life, Please and Thank-You. I'm pretty sure when i reached the check-out that i was given the wrong charge. Or maybe i picked up the wrong reciept?

Either way, it's not something i'd wish on anyone...regardless of how much i hated them.

And either way, this isn't anything i try to spend too much time thinking about. I better stow it away in the secret box that lays within my brain and lock it up.

Anywho, tonight was fine. I lazed around like a cow and read. I just cuddled with the Heidi Speidi b/c she was annoying me. I think it worked. The cuddling stops when she starts to drool, and she gets so happy that she looks like an aged Gremlin.

And that's all for now.

Thursday, July 24, 2008

Je suis tired

I can't remember how to say 'tired' in the English word will have to suffice for now.

So I went to see Don yesterday. Physically - and lungally- he's doing great. He's on low sedation and trying to fight it so he's moving around a lot which is good for the lungs. He was a little agitated with fighting the sedation but other than that things are great. His incision looks amazing. It's not inflamed and there's no dry blood anywhere on it. It's a clean cut and the surgeons did a good job. So far, his lungs are liking their new home! So yay!

My parents are up at the cottage for a couple of days so i had some friends over last night. We just hung out and watched movies but it was great. It was just Krystal and Tara and Chantel who came over...Jenna couldn't make it, and Katey is selfishly at her cottage. She will be forgiven at some point in the future for missing my little get together. As a result, I'm exhausted today. My legs feel like i can't stand for too long w/o the urge to just fall to the floor and sit. I dunno if it's from standing so much after everyone left and i just hung with Chantel for a bit or what. Either way i had a long day. Got up at 7am to catch the bus...came home at 3:30 and didn't get to bed to 2am. Then i had to get up at 5:45 b/c the Spawn was howling, so i fed the dogs, let them out, waited for them to go pee and such, and went back to bed for 4 more hours. But i'm still exhausted. Ugh.

Luckily i'm alone today and can be as lazy as I like! I plan on sitting here all day in my jammies. I already called the O2 company since i couldn't get around to it yesterday. I need the liquid tank filled. Luckily i did the dishes last night so that's good. The cats, dogs, and fish are all fed. I am not and I am starving. Later on i have to go to the mall but that's not till like...7. I hope.

I saw a bunny lastnight. It dashed in front of my car.

That's about it.

Sunday, July 20, 2008

Don got the call...

The guy i have been getting rides with to TO every Weds, Don, got his lungs on Friday! I received an email this morning from his wife informing me of this. I promptly screamed, and gasped, and called my dad into my room to read the email. I wrote his wife back excitedly, informing her that i needed a drink.

Words cannot express how elated I am for Don - and for Bob, and for Matt! So many lungs in so little time. That's incredibly morbid and gross almost, but interesting nonetheless. A huge huge thanks has to go out to those who consent and are selfless enough to agree to organ donation upon thier death. And a huge huge thanks has to go out to the families who agree to follow through with such a wish. It cannot be easy, to consent to saving complete strangers lives knowing full means the ultimate death of your loved one. It takes takes more than that, and without these people, my friends would have only had a little time left. So thank you donors.

I am going to visit Don on Weds when i go down to TO. I am back to taking the bus now, now that Don is in hosp, but that's's only once a week. Also, i have to go for my echo again, as the ppl at the cardiac place fucked the date up and gave me a day that wasn't actually it. Oh well. Not much i can do...i'm thankful they were able to give me a day where I would at least be in TO. That is hard to come by.

So that's about it people! I'm still here, and I'm still waiting. And for now, I guess that is ok.

Thursday, July 17, 2008

Matt got the call...

For those who comment, you'll know someone named Matt is a regular reader/commenter/is also someone who is too lazy to convert celsius into farenheit. Anyways, he got his call for lungs today at 1pm and he is already in surgery with one lung out! I hope all goes well for you Matt and that we get to chat soon! I wish you all the best!!!

Hugs to you!

For those who wish to read updates go here to his caringbridge site: If it takes you to a home page and you need to type in a name, type in matthewtodd and it should take you to his page.

Thanx! I'm so happy for you Matt! I can't beleive we were JUST talking about this the other day! And no, i havent felt that i can't breathe driving 120km/h b/c i always sit in the back seat - muhahahahaha.

Not much

I had a dream lastnight that i broke my leg and it had to be stapled back on. I remember looking down and seeing my thigh (which was significantly larger than it actually is) and marvelling at the mangeled staple work of whoever did it. The area was numb, and it didn't hurt to touch them, but i remember the it felt itchy and the skin was dry. Other than that, you couldn't tell that my leg had broken off - or whatever happened to it.

I've also seen 2 bunnies the last 2 days in a row - the same bunny- sitting on a sidewalk that goes through a feild of tall grass, munching away. Karyn must be sending me signs still...and i always know when they're from her and when they're just there b/c they are. I know they're signs b/c my eyes fall onto the bunnies, i never have to search for them...i just look somewhere and there it is in my line of sight. It's comforting.

Other than that there really isn't much to report. Not much is happening in my neck of the world. It's hot again and i felt like i was suffocating today from the humidity but i love it. I made Scottish Scones yesterday and they're all gone b/c i live with a bunch of greedy pigs it seems. Also, I'm going to my nana and papa's tomorrow for lunch so i'm sure i'll come back with some crazy stories. We're having sandwiches so we'll see how it goes. Last time i had lunch at my nana and papas, my sandwich was flattened from fingers when it was getting made. Oh nana I do love you.

Started new pill called Syprax. It's an antibiotic but also combats phlegminess (allegedly) So far it's not doing much of anything. I'm fully recovered after suffering from that horrible gastro test last week, but I can't help choking on pills whenever i take them b/c i think about the fact that i'm a 'weak swollower' with 'a small espophagus'. This knowledge makes for many choking incidents as of late, and I don't know whether this information helps or hurts me now.

Other than that, that's about it.

Thursday, July 10, 2008

Are doctors people?

Of course not; they're like teachers: they're not real....they only exist when you see them and once you're gone they sink into a hole in the ground - an underworld of sorts - and that's where they exist. You don't see them in the real world outside of their natural habitat. If you do, that's just weird.

I was struck with this realization just now, as I watch Hopkins (the 6 part documentary about Hopkins Hospital) and they showed all this footage of the docs being people, doing things like socializing with eachother, laughing, having fun, driving, that sort of stuff. And it's weird. They show their faults, their anger and frustration with their jobs, they show them being real and that's very frightening.

Like teachers, they're normal people. People who fuck up, people who eat and sleep, and they're people who hate other people (like myself). It was weird to for once witness a person aside from the doctor persona. You know?

Is it weird that i realize this? That i've finally established the mentality that doctors aren't some special species who don't go through what we do?? Is it weird that these so called 'normal' people actually do go through a Grey's Anatomy kind of lifestyle?

Am i making sense?

Probably not.

Monday, July 7, 2008

Esophigal Test = FAIL

So i just got back from that god-awful Espophagal Motility test, where they put this wretched tube down your nose and through the back of your throat to measure if you get heartburn over the course of 24 hours. As the tube went in, I began gagging, and coughing, and was to the point that i was going to vomit even though my stomach was vacant due to mandatory starvation for such test. When the tube was placed, i could feel it in the back of my throat and i wanted to cry. I wanted to cry and vomit all at the same time.

The nurse was so so nice, and i appolgized for gagging on her. She told me i was a weak swollower (whatever that means) and that it may be different. She put the tube down my bad nostril - the right one, where my polyp lives - and w/o O2 i couldn't breathe.

She told me that if i had something warm to drink it would get i had a whole thing of tea but to no avail. I tried eating a bagel and it pulled the tube and it hurt to the point that i wanted to burst into tears. So after having it in for almost 30 minutes, i went back up to the floor and asked if i could see the nurse to see what she could do. She did tell me that i could pull it at anytime if it was bad, but i didn't feel comfortable. I told her i could feel it in the back of my throat - like horrible post nasal drip but solid - and i told her that it pulled and was painful to eat, so she pulled it.

And i feel so much better.

It took about 15 minutes to put the tube in - what between my coughing and gagging. And it took her not even 20 seconds to pull it, which leads me to beleive the tube had moved from the place she had put it. She said that i wouldn't have to do it again b/c this does happen to people, but i was able to record on the little thing what i had managed to consume...So we'll see.

I need to go b/c i am writing this from the hospital library. More later.

P.S. It was one year ago today that i spent the night in the sleep lab!

Saturday, July 5, 2008

It's awkward...

Canada day was good....I hung out at my neighbours house all day and ate and played cards, talked about tx a bit and the like, and in the end i backed out of going to fireworks b/c i couldn't do all the walking. I felt bad but i knew that if i had gone, i'd spend the entire evening wanting to be at home. So i opted for the safeness of my house and read my book (which i've now since finished as of Wednesday).

Yesterday was Jess and Danny's Stag and Doe. It was great; i sold tickets/took the tickets of people coming, and asked them to put their names and their phone numbers on the back so i could set them aside in a wicker basket for later on when we draw the door prizes. One guy asked me if he could keep his ticket with my number on the back, which i thought was sweet and incredibly weird at the same time. This wasn't the only guy though. Later on, i was informed by one of the groomsman that I would be his (the groomsmans) dancing partner for the wedding. Which is fine..except he's extremely taller than i am.

When i was being released from a hug with the groomsman (or usher as my mum has informed me) i was asked by another guy how tall i was. I get this question a lot, and sometimes it still bothers me but i've completely stopped using my bitchy answer and this is what i said:

"7 feet tall."
"7 feet tall."
"You're 7 feet tall?"
"Yes...Actually, I'm taller than [him] (the groomsman/usher) and it's just an optical illusion that i look smaller than him."

And then i think i walked away and made him feel incredibly bad about asking me how tall i was. I didn't mean to be rude or anything, but it woulda been damn awkward had i kept standing there, feeling no bigger than a bug. Later on he came up to me (drunk) and appoligized if he had offended me. I laughed and assured him that he hadn't; that I was joking. I also refrained from adding that he must be a stupid fucking idiot that he hadn't caught on to the fact that i was joking...instead i kept it to myself.

Later on, someone asked me what the pager was for.
"I'm a doctor."
"You're serious?"
"Yes. Why else would i have a pager?"

And it's completely funny b/c i say this with a straight face and everyone beleives me. They're shocked b/c i am so young to be an actual doctor, but my answer is so convincing that they have to repeatedly ask. Don't get me wrong, I am not ashamed of my pager or anything, but it's pretty awkward when people you don't know ask you out of curiosity why you have a pager in the first place, and it would be even more awkard if i laid the heavy truth on them that i was waiting for a double lung transplant and that i had to carry the pager around in case they call me when i'm not alone. Insofar, doctor trumps waiting for lung transplant.

The night continued on well..we made lots of money. I stayed till the near end and fell into bed. I've been in a good mood all day. My sis informed me that her new bf would be coming over and that if i was worried about looking ugly again when he shows up, that i have fair warning to go make myself look human. And i did kind of, but i dind't change. She told me i could stay sitting on the deck when he came over, and that it wasn't an issue, but suddenly, when he appeared, and i realized that it would be me, and them...i suddenly felt incredibly much like a third wheel. A coughing wheel at that. So i went out, smiled, grabbed my stuff, and my sister told me nicely that i could say, and i said stupidly, "No it's ok. I don't want to be in the way..." and i dashed for the slider and she asked, "in the way of what?" and i mumbled, sounding like a man, "from talking".

It got even more awkard when i had to go back out and ask about where she had put my gum. i could tell my sister wanted to make a conversation but i really wanted to get the hell out. She told me i could go to her car and get some (since she threw mine out) and i said, "no it's ok" and i let out a barking, wet, lingering, unstoppable, phlegmy cough. It honestly sounded like thunder in the distance, and it was embarassing, and had i actually been in a position to run, i would have - straight into the house where i could sheild the world of my disgustingness. But actually...i think it saved me from ever having to be forced to sit down with new people for fear that i would inadvertently gross them out by means beyond my control.

So i guess it all works out.

I admit i feel incredibly rude having left, esp. now as i hear my mum and dad out with them but honestly....honestly?!

Before i go i must inform you all that Bob (have i mentioned Bob?) from rehab, got his transplant last week! Thurs, June 26th he got his new lungs and i couldn't be happier! Bob has truely been a good outlet for me - he has taken me under his oxygen wing and guided me with wisdom, positivity, and support since being listed. I can only hope that my time comes soon.

Speaking of soon, THE BLOG BLOG IS 1 YEAR OLD TODAY!!!!!


Tuesday, July 1, 2008


HAPPY CANADA DAY!!!!!!!!!!!!!!! We are officially 141 years old on this very day. This post cannot be long as i have some festivities to attend to (which i don't feel up to) and will post later.

I hope ally my fellow Canadians have a great holiday!