My Double Lung Transplant

Tuesday, September 30, 2008

Smack on the deck

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

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

I have a scratch."

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

Monday, September 29, 2008

Mirror Mirror and 5 months

There was a little bit of an incident today on the way to rehab. Actually...it wasn't on the 'way' it was more like i had driven about 10 seconds from my house when it happened.

I pulled down the hill to see the light at the end of the street was red. Great, perfect opportunity for me to pull down my mirror and look at myself. I actually wanted to see my shirt - which i'm in love with today - but i also wanted to take the time at hand to inspect the zit that has taken up residence on my chin. I popped it nicely this morning and put coverup on it, and wanted to make sure the coverup hadn't gotten all dried up and crusty, which it had. After realizing there was nothing i could do to save the horrifying appearance of my crusty coverup, i looked into my eyes and admired their colour.

I'm not lying. I actually did. I bought that Almay eyeshadow and eyeliner and mascara for your eye colour that allegedly makes the colour 'pop'. Well it works, b/c for once they looked magestic and not boring. I was so taken up by myself that it took the honk from behind me to bring me to my senses. Feeling irked at being rudely drawn from my little world, i looked in my rearview mirror to see the guy (whos car i had finished admiring right before the red light! it looks like the batmobile) behind me throwing his hands up and screaming. I flipped the mirror up and began to drive, when the light turned yellow and i stopped.

This caused him to start honking again, and the person behind him began to honk, and they both threw their hands up and started screaming at me in their cars. I felt bad and didn't want to look back for fear they'd meet my eyes and say something rude to me.

Finally, the light turned green and i sped away slowly - on purpose - and couldn't help but laugh an evil laugh at their pissiness.

Muhahahahaha.

Last night me and the girlies finished Season 1 of the Tudors. Jenna informed me that I offically added another notch to her "Why Bree is Awesome" list (the newest notch being the experience just listed above!). It started when i arrived at her place one Sunday morning, with freshly cooked bacon wrapped in paper towels. Well, i added 3 more notches lastnight by expanding my ability to cram almost everything into my purse. Not only did I have a full season of the Tudors in it, i had my wallet, my puffers, a lot of paper, a phone, a bag of chips, AND a jar of salsa. The only thing missing clearly was a small child.

The interns are back at TGH. They're back in swarms since school has begun. I was engulfed by a sea of interns one day as i stepped off the elevators, and i feel like i have more authority and more right to be in the hospital than they do, which is arrogant since they have more medical knowledge than i likely do. There are countless hotties, countless countless hotties.

No new interns in rehab yet...which is ok. I guess.

What else? Still on Tetracycline. Dare i say i'm feeling a little bit better? Who knows..it's probably a mask to cover the absolutely crappiness that lies within. I shall manage. I have a meeting with that GI specialist on Weds and a meeting with the surgeon next Monday.

Hope all goes well and as always that i get my call soon! Today marks 5 months that I've been listed!

Friday, September 26, 2008

You may have noticed...

..That i added a playlist.

This was the joint effort/brain child of myself and Meghann earlier this aft. Carefully crafted, it was contrived as a team; an act of reciprocity between us as i gave her my recipe for Scottish Scones in turn for deets on how to add a playlist. It almost failed b/c i was using my mother's laptop, which hates my fingers and thus greatly hinders my ability to spell correctly when i talk to people (thus making me unable to get messages across to other people clearly). It's not that i can't type; it's that the laptop doesn't like my fingers.

It may not be the 'best' music out there, but they are songs that hold great memories for myself! Of dance class mainly from high school. Any catchy song can be danced to, really.

Still on Tetracycline. Not doing anything. I just don't care anymore. I'll keep taking it tho for obvious reasons, but...fuck. Seriously?

I can't think of anything else to say other than this: i hope i get my call soon!

Any suggestions for other songs to add to the playlist??

Sunday, September 21, 2008

Tetracycline Wars

I'm in battle with Tetracycline.

I'm on the front lines and still being blasted by these fuckers.

(sorry...was that a bit too harsh?)

I still have yet to strike a happy medium with this biohazard looking antibiotic. I've gotten myself into a schedule of taking it at 9am, 1pm, 5pm, 9pm.

Ok that was yesterday.

Today it was 10:12am, 1:41pm, most likely will be 5 or 6pm, and then 9-10pm.

It's hard to schedule eating around these little pills...since you have to take them either on an empty stomach, or an hour before you intend to eat, or 2-3 hours after eating. Suprisingly, my fear of starving to death over the next 14 days has dwindled and i've managed to consume more food than i usually do.

Today is Monday, which means that i also have to take my other 2 antibiotics - Septra and Zithromax. So that means i will be taking 8 pills of Tetracycline, one septra, 1 zithromax, and my singulaire pill. That's 11 pills and 2 very abused kidneys. I know this is nothing compared to the amount of pills i'll take post tx, but when it comes to antibiotics...it seems a bit excessive.

I started experiencing pains of pleurisy again. not horrendous but enough that it drove me to take a Motrin. I did wonder whether or not it was safe to do so - being that i'm loaded with corrosive chemical substance at the moment - but rationalized with myself that i was instructed to take Tylenol 2 when i have pleurisy and also accompany it with an antibiotic so...I guess it's not all bad?


Instead of following the instructions on the bottle by taking the Tetracycline with a full glass of water, i had it with half a glass of peach juice this morning, and half a can of coke at lunch. Since my head didn't blow off and my guts stayed in tact, i feel pretty assured that it's not 100% for-sure that this thing must be taken with water.

Tomorrow i'm off to TO again.

Nothing

There's nothing to do today.

Nothing. I'm going to Jenna's at 7 with the girlies to have a Tudors night (oh Sir Charles Brandon...mmm) but that's about it. Rumor has it my sister's bf may be coming for supper, and it's still debatable as to whether or not i will make myself presentable for such occasion. Only time will tell.

I called in and ordered a 'script for an antibiotic. One aptly named Tetracyclin aka Something That Looks like Poison. The capsils are yellow and orange and somehow scream out 'BIOHAZARD' to me when i look at them. I cannot take them with food; i cannot eat dairy, vitamins, anacids, or anything with Zinc prior to or after consuming the pills. The pills must be taken with a full glass of water and I have to take 2 pills 4 times a day.

Yes. You read that right. 2 pills 4 times a day.

I must have them on an empty stomach or take them 2-3 hours after eating.

It seems impossible doesn't it? I have to keep this shit up for 14 days. I feel like i'm pretty much going to be unable to eat, and will wither away to nothing and most likely die from starvation. And i have a strong inkling that taking these for 14 days will pretty much do nothing for me. You could blast these lungs with steriods from a light beam and they wouldn't get better.

I'm not a fan of water. It makes me feel sick when i drink large quantities in a short amount of time. It makes me pee alot and feel bloated. Oh well. Other than that i'm happy.

Yesterday was spent at my aunt Kathryn's 65th b-day. My other aunt, Pam (her sister) decorated the front of Kathryn's house with 65 bras in celebration. How such a feat was accomplished remains a mystery, since my cousin's husband Allan assured everyone that they were drunk before they did it and time went by really quickly. It sounds like they had fun.

There's nothing really to blog about. I'm just letting everyone know that I'm still here.

Wednesday, September 17, 2008

Um....why the fuck are you here???

This was the question i asked of people today, through a vicious glare at rehab, as I tried to wrangle my way to the weights 'table'/'giant bench' that you're supposed to sit on to lift weights. 3 people at a time can fit on it if you squeeze, but it's extremely difficult when people feel the need to bring their entire family into the physio room, and it's even more rage-inducing when they all crowd around the weights section to watch you.

WHY!? WHY THE FUCK DO YOU WANT TO WATCH YOUR SICKLY FAMILY MEMBER FEEBLY ATTEMPT TO LIFT A 5lb WEIGHT 10x's WHEN THERE'S DICK ALL YOU CAN DO!?!?!!

Fuck off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My god i fucking hate people sometimes! Honest to god, is it THAT necessary to bring everyone and their dog to physio?? NO. IT'S FUCKING NOT!!!

*freaks out*

Anyways...

I saw Ray today. I set down my purse before i came within close proximity as to not thump him another good one in the chest in a repeat of last week's horrifying events. Ray laughed and assured me he was a-ok, by lifting his shirt and showing me his staple-free incision. It's healed so well! It's roughly the colour of the letters i'm typing in, and being a mere 3-4 weeks post-tx, and being over the age of 60, that's pretty fucken awesome if i do say so myself. The fact that my 30lbs Guess purse swung around with enough force to crack his sternum and actually hit him, but didn't leave any damage, is astounding. Way to go Ray! I completely forgot what i was going to say about you...

I am exhausted. I have finally concluded that i'm in fact getting sick so i am succumbing to guilt and calling in to get a prescription for tetra something filled tomorrow.

That's about it.

*crossing fingers she gets the call soon!*

Saturday, September 13, 2008

My Boys

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

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

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

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

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

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

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

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

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

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

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

And that is all.

Monday, September 8, 2008

Pre-getting sick

*internal dialogue*

I think we're getting sick.
We feel sick but we're not quite sure. Sickness is not full-fledged yet.

*you wait and then BAM!*

FUCK. We're sick. We should have gone to the doctors. Oh well.

Usually when i begin to fall ill, this is how it goes. It's a game of cat and mouse, hide and seek, wait and go. Usually it starts off with a numbing, floating, pain in the lungs (which docs swear is BS b/c lungs don't have feelings but i'm pretty sure THAT'S BS b/c mine DO feel pain - esp when my lower left lung pops).

Anyways...

With this floating pain is more coughing, which hurts too. More phlegm (which is always hard to decipher b/c there's just sooo much how can you honestly tell when there's more??). It's almost always dark in colour which makes it that much more difficult to gage the actual amount of sickness that recides on the inside. So we wait. And we get sicker. We get so sick that we just don't feel it anymore and don't even bother to go to the docs. We just wait till the next one comes about.

That's probably not normal, and it's probably not a mentality that i should adopt and keep post-tx, since it could possibly result in rejection, bronchiectasis again, or something else completely dreadful. I mean fuck, i fought hard enough to get new lungs, it'd be completely irresponsible for me to go and fuck that up.

So anyways, that's usually how the art of getting sick occurs. It's a huge confusing battle and neither side wins. So whatever.

Truth be told I'm not sure if i'm sick again...or if it's just my regular 'sickness' paying a visit, reminding me that lung disease does in fact completely suck. It's so hard to gage like i said. I feel like i'm repeating myself.

I'm still waiting for another 'call', hopefully the 'real' deal. It's weird but i find myself getting frustrated that it hasn't come or that i don't know when it will come again. It's weird to think that a week ago tomorrow i got a potential call. It's weird to think that had i not dicked around i could have possibly made it to the hosp in time. I still can't help but feel that i moved entirely too slow, even tho i did run from the docs office to my car, and proceeded to hurt my ankle in the process. I know tho that i could have easily made it to the hosp and had the surgery be called off so.....It's just weird to think that had it all worked out, i'd be breathing with new lungs right now.

Oh well...I have to stop with the 'if's, and's, or but's'.

There was an uproar at rehab today over parking. This resulted in me calling the parking man a 'douchebag', a 'bastard', and that canceling my parking card b/c i needed to pay again even tho i payed the $14 last week, was 'bullshit'. Everyone who goes to rehab had this happen to them, but the man was set on his ways and said i had to pay again. I told him i wouldn't, and that i didn't keep track of what day of the month i paid my parking fee...i just knew that i paid the 25th of August and that i'm pretty sure i only pay once a month instead of twice. I hope he gets his shit sorted out or else i won't be coming. It's too tedious for me to walk to security every rehab appointment just to fight with the guy and pay this parking 'fee' that doesn't exist.

That's about it. Nothing exicting is happening to me. I'm watching the Tudors at the moment, where the sex is good, the men are hot, and i get extremely jealous of the outrageous dresses and hordes of man jewelery adorned in and around their pantaloons.

Friday, September 5, 2008

Lazy

I want to be lazy.

For the last 2 weeks i've had something to do, somewhere to go, some doc appt to attend to, or somewhere to be. I have at least 1 day 'off', and it's not enough. Not in my situation anyway.

My mum woke me rudely up at 6:13 this morning, telling me to wake up b/c i would late for physio. I promply pried my eye open, told her to go to hell, and that i had until 7am to sleep in b/c i left for physio at 8am. She shut my door in a huff, and then crows began to sing outside my window. If guns were legal in Canada, I would have gladly shot all of them. But alas i had to haul ass out of bed, slam my window shut, and i fell into bed like a rock.

I slept for another hour, when i rose again, in slightly better mood but still exhausted.

The exhaustion has been creeping up on me rapidly for the last couple of days. I feel like, today especially, like my limbs are hollow and full of wet sand, making me heavy and not wanting to move. Not sure how i did physio either; pretty sure i lied on my sheet and said i did a substantial amount more than i actually did. I'm pretty sure that once i was out of view that i sat on a chair by myself and held a 3lb weight in my hand for 10 seconds, and counted it as actually doing 10 reps instead.

After that I had to go to my nana and papa's to write addresses for envelopes to send to ppl for their 60th wedding anniversary. It's done via snailmail, since nana and papa don't have a computer, though they claim to know someone who 'has an internet'. I got pizza for lunch and brownies from my nana, and it was (as papa says), "marvelous".

After that I went to the cemetary and visited Karyn. I havent been since January on the anniversary of her passing, and since my nana and papa's place is right across the street, i popped in for a bit. The last time i went it was the dead of winter (pardon the pun) and her grave had half a foot of snow and was slushy. Today it was warm and windy and i could actually sit in front of it and say some words to her. I touched her headstone, kissed my hand and touched it, and rose to leave. I asked her for strength; for a sign, and that my transplant would come soon. Karyn was an organ donor. She saved 7 people. She of all people knew and valued the urgency in such a thing, and if there was anyone for me to send such a wish to, it would be her - my dearly missed friend.

When i got into the car I cried hysterically. For what, I don't know. I know that she's gone but the notion can strike you at the oddest of moments...you realize, "shit, she's gone". Sometimes it doesn't matter that it's been 4 years. As I drove away, that new song by Hedley came on the radio, called "Old School." Anyone who knows it, knows it's a song reflecting how things were with friends when they were in high school, all the things they did, all the memories they made, and the 'beautiful insanity' of it all. If there ever was a more appropriate song to be sent to me, it was that.

When i got home i looked at my watch. It read 1:22. Karyn's b-day is 1/22.

Coincidence???

Either way, that's about all i have to say.

I've gone and babbled and made no sense. It's time for me to go. It feels like 2 stone-aged people are trying to burn flint in my lungs. Ugh.

Thursday, September 4, 2008

Aftermath

The night before i got my call, i had a dream that my pager went off twice and i missed it. Everytime i've had a dream that i've gotten 'the call', i've somehow managed to miss it. In my dream i remember checking my pager and hitting the green button and it saying, "NEW: 2". I didn't freak out tho.

The events that transpired on Tuesday definately reflected that. I was leaving my docs office when it happened. It's ironic b/c she had just finished telling me how bad my lungs were and that when I get sick next, oral antibiotics won't cut it; I will pretty much be on IV's all the time. I stood up and she walked to her door, when my phone rang and something started to beep. I looked down and my phone said "Restricted call". Thinking it rude to answer the phone in the docs office, I shut it and hung up on whoever was calling.

I didn't know it was 'them', the transplant team.

Thankfully, my pager went off and my doc and I couldn't figure out where the beeping was coming from. I always thought I would just know when it came, you know? Like when someone calls you with bad news, you know it's bad before you even answer the phone. Either way, we stood there for a good time before my brain registered, "OMG IT'S YOUR PAGER (you fucking idiot!)".

All was pandemonium.

I had a feeling tho that it wouldn't happen, that it would be a dry run. I just couldn't see it being the real thing, that my week would commence as it usually would... but now i know that it's definately coming soon which is awesome.

As my brain dodged these thoughts, i registered the positive of the situation:
a) i, thank god, had make up on, and looked relatively cute
b) it was fantastically warm outside which is always a plus
c) it validated my reason for taking the semester/year off, since uni started back today
d) Np period - always a plus

But then i remembered that i hadn't showered, and i was sweating from nerves. My mum took a pic of me and i looked frazzled and discombobulated. My camera is in getting fixed b/c, like Humpty Dumpty, it had a great fall, and took a tumble off my shelf and crashed into the wall. I wanted to have my camera with me for when i got the call but considering the situation at hand, getting new lungs and being able to breathe greatly trumped the absense of my camera momentarily. Mum's disgusting blackberry picture would have to suffice for the time being.

I couldn't get a hold of anyone save Jenna. I had to tell my mum twice on the phone that i had gotten the call, ("You got the call? What call?" "the FUCKING CALL MUM!" "Oh....OH!"...). Everything was going the wrong way, but it was a lot calmer than what my head thought would actually happen.

Everyone says the call comes when you least expect it. I always thought that was bullshit. What did they know? They don't know me, right? Well fuck me people, it came when i least expected it. At 11:06 in the morning at the doctors office in another city? Hello? No, i was certain my call would come in the middle of the night, and it would be madness, and my concern would be finding a bra to put on stat and trying to somehow make myself look cute.

Afterall, that's the most important matter when you're going in for major surgery and you're going to look disgusting afterwards anyways.

So here i sit, 2 days later, in the aftermath of an event that has brought me extremely closer to a goal that for so many years has been unobtainable. To think that had things worked out on Tues, i'd be awake and breathing right now. But things happen for a reason, and my 'real' time is coming very soon (of that I'm sure).

So lets hope it happens soon people, and the next aftermath will be the life-changing one.

Thanks for all your kind comments and words of encouragment! They mean so much to me and you guys ROCK!

And ow, shit, I just seriously snapped a rib sneezing. This much sneezing power should be illegal.

Tuesday, September 2, 2008

Got the call!

I GOT THE CALL FOR LUNGS TODAY!

At 11:06am they called the house and I wasn't here, I was at the docs in another city. My doc and i were talking about how i may wait longer b/c of my size, when something started beeping and my phone started vibrating, and i checked my pager and it said "1 NEW MSG" and my phone kept ringing. IT WAS THE CALL.

They asked me if i had anything to eat and i said a small breakfast. They told me not to eat anything and to get to TO asap. I told them i wasn't in my city, i was at my respirologist and they told me to get there as fast as i could. I was freaking out/shaking/alarmingly calm. They said to get there by 12:30 and that the donor was a 'beautiful little girl' with 'beautiful pink lungs' but she was deteriorating rapidly.

We made it to Milton when they called my cell again informing me that the donor had deteriorated too fast and that the surgery was off. I wasn't suprised, but i am a little bummed. Part of me wonders if i dawdled too much at the docs, or if i could have gone faster. But i know i can't do that since it largely depends on the donor.

Am i crushed? Not really. If i don't think about it i'm fine; it's when i think about it that i get down. At least they know i'm on the list and near the top! I just hope i don't wait too much longer till the real call comes!

Say a prayer for me people!

For now, I'm going to Jenna's house for apple crisp and try to be as normal as possible.