My Double Lung Transplant

Wednesday, July 28, 2010

So speechless....

I've had a shitty day - it seems like everyone has.

First i found out I can't do roller derby b/c it's a contact sport - I can't do any contact sports, so that royally bummed me out, and nothing anyone said or did could cheer me up. Jenna sent me a link on weird sports that people could do and the only thing that put even the slightest ray of sunshine into my darkened mood was an actual sport called 'shin kicking'. Yes, shin kicking, where you kick people as hard as you can in the shins for fun. The next closest mood booster was mentions of going on a hunger strike, a national geographic special on death camps, and thoughts of zombies.

And then Jess called me to tell me about her bad day. She woke up, discovered a flat tire, pumped it, backed out of her drive way......

and ran over her cat :(

Rest in Peace Toby, you were awesome and I will miss squeezing and loving you:(

This morning i had a meeting for and my friend Carol was there. We were talking about all things transplant when the mention of donor letters came up. I mentioned how i wrote mine back in October but hadn't heard back, but how i wanted to but felt i never would. I don't remember if she said she wrote hers. But either way, i was bound and determined to live my life never knowing a single shred of anything about my donor.

And then my co-ordinator called.

A letter from my donor family had arrived at the hospital....

Sunday, July 25, 2010

Some cool stuff

Lots has been happening these last few days. Cool stuff, exciting stuff....stuff in general.

First: MY SISTER GOT ENGAGED!!!!!!!! How exciting!

Second: I AM JOING A ROLLER DERBY TEAM! Yes! For real! I am joining with Krystal and my friend Laura. We are sooooooo stoked. To quote Krystal, we are excited to "push and shove people" and generally get the collective shit knocked out of us. AND! Hopefully we get names. So far this is what we've come up with:

Krystal: Fire Kracker

Laura: Ankle Biter

Me: Biggie Smalls.

For real!!!!!!

Third: I never went for my IV on Friday, because they were understaffed, so at some point this week, amongst all my other shit, i have to go in. My week is insane.

Monday: PFTs, blood work
Tues: x-ray, roller derby meeting
Weds: RecycleMe thing, follow up "i has pneumonia?" appointment
Thurs: nothing, IV maybe?
Fri: brunch with the physio gals

Yup, but i'm excited to have stuff to do for once. Today i'm sitting out on the deck, with a tea, working on my Ontario Geneaological Society stuff. It's sooooooo cool. Unfortunately, due to confidentiality, i can't really disclose much else.

My parents are on vacation for the next 2 weeks, and at some point we're going to go up to Durham to visit my grandma c's grave, because we havent been since she died back in '96.

Would you like to hear a funny story about that? Yes, yes you would.

When my Grandma C died, she had a dog named Cuddles. Cuddles thus went into the custody of my Aunt Pam. Well, Cuddles died this past year, and Aunt Pam had the wee creature cremated. But whatever did she do with him? Well, she called my Aunt Katharine-Anne and made a trip up to Durham with a bright idea. Together, they went to the cemetary where Grandma C is burried and brought a spade.

And they dug a hole.

Where Grandma C is burried.

Yeah. We're all aware that this is entirely illegal, but at least Grandma and Cuddles are reunited at least, eh?

*smiles all around*

What else? I just finished talking to my cousin who i don't get to talk to all that often. Thank god for facebook and it's ability to track family members and people. I always make a point to go out of my way to message my family members because I think it's incredibly important to stay in touch - no matter how weird or distant or whatever some people can be. And always let them know you love them, because family is important.

In other news, we have 2 frogs in our pond! They're small, and we beleive they came to our pond in a bit of plants that dad stole from a swamp one day.

Anywho, that's it for now. Must go get another tea: mine tastes like shit.

Thursday, July 22, 2010

Nobody Knows

...if I go for my IV tomorrow or not.

You'd think i'd be able to remember if i get it every 4 or 5 weeks, but truth be told, I don't really know. And apparently, neither do they. The last time I went was June 25th, and the nurse said, "we'll schedule you for July 25th then..." - making it one month.

But July 25th falls on a I'm wondering if she meant tomorrow, July 23rd, or the week of July 25th, which would mean i go in on the 30th. So i rang the hosp up, and after explaining my confusion, I only succeeded in confusing them. So they have to call up my medical records and look to see if i'm every 4 or 5 weeks, because no one wrote my appointment down. Good thing i called. I'm not angry over this at all - i think it's funny.

Usually, the week I need to go for my IV i feel shitty: unmotivated, can't be peeled from the couch, just generally like I have no energy. But this week I'm not too bad to be honest, but again, it can vary month to month. So we shall see.

Yesterday was exciting. It saw me galavanting over to TO for my bi-annual appointment at Sick Kids. It was scheduled for 11am and i was in an out before 12 lunch! A miracle i say! AND! NO BLOOD WAS TAKEN! WEEEEEEEEEEEEE!

But it doesn't end there. Oh no. In my homesickness for TGH i wondered across the street and into the hosp, where i had the fortune of seeing so many friends! First, before my appt at Sick Kids (the bus got in at 9:45), I went to the physio room where I saw Cynthia (she got her tx in June and waited exactly 3 years to the day). She looks FABULOUS and i couldn't've been more happy to see her. Then i ran into Vivian and his wife (yes, his - Viv is male), and he looks great. He asked me if i'd come back after my appt to join them and a few others for lunch, and I said i'd try my best to make it.

Luckily i did! I ate lunch with Sandi (who's still waiting), Amy and Kendal, Vivian and his wife, and Sharon. It was so lovely to see them all since it's been months since i have! Lunch was at 12 and I stayed until 3:30 just chatting and hanging out and catching up. I truely love my transplant friends more than i think i can verbally express it. If i have one shred of advice for anyone waiting transplant, it's this: make friends with your fellow tx'ers, because they are relationships and friendships that you will have for life, and no one will understand you better than them. Gather them around you and hold them tight and value them as if you value your own family, because unfortunately, you don't know how much time you have with them. You may have years, decades, centuries...or you may only have days and months....But regardless, make the effort to make friends with your fellow tx'er because they get it.

I spent most of my time chatting with Amy, who just had her second tx in January. She's had consistent issues post, and i think it was good for her to see me because she was able to get a lot off her chest. She didn't know i was coming and practically cried when she saw me. She has 2 tickets to see Legally Blonde: The Musical but no one to go with (she doesn't want to make her husband see it), so i said I would go and her face lit up when i told her i'd go with her. So that will be within the next few weeks.

We shared with eachother our transplant hallucinations (she thought her husband joined a rockband and left her), and in the secrecy of the hospital bathroom, we lifted our shirts and showed eachother our transplant scars. It seems silly maybe to some, but it's a moment and memory i will cherish forever, because to me it signifies an established bond of trust and friendship that we have together. It doesn't matter that our scars are identical and that we don't really need to show eachother, but in doing so, it loudly says 'i'm here, i understand, because i've been there too'.

I'm so glad I went to Toronto and didn't just go to Sick Kids and go home. I'm glad i abandoned all sense of time and bus schedules and just let myself be at one with the hosp and my friends and just enjoy the day.

And along those lines, I got my schedule for my 1 year assessment in the mail the other day. These next few weeks will be busy busy, because i also have other annual appointments, and follow ups for the pneumoia (which is pretty much gone, yay!). These next 4 weeks i literally have appts every other day, which is ok. It's normal for me. I should be paid to be a professional appointment-goer i think.

And in the midst of all this, I got a volunteer position with the Ontario Geneaological Society! I am a Family History Indexer, and i read people's family histories and record first and last names in Excel for a name index thing, and email the spread sheet back to the OGS. It's slightly more complicated than that, but that's the gist of it.

AND! I am volunteering for again next Weds, so that should be good!

So yes, lots to do, lots to see, lots to learn. I am excited to finally be doing something.

I think i have written enough for this entry!

Monday, July 19, 2010

The Inducer of Poo

Poo and You!

It's no secret that crappy stupid iron pills and me do not get along, and will never be friends, or get married, but the shitty truth is (no pun intended), is that my iron levels are 75 when they should be 120 so i have to take them. BUT! Iron turns my stomach to stone and thus I do not poo. Example: 2 Thursdays ago I took 1 ferrous gluconate at breakfast, and one after supper, and i proceeded to not shit until the following Tuesday.

So I mentioned this at my doctors today, when I was there for an 'i has pneumonia?' appointment. She proscribed a laxative/lactose liquid thing that I'm to take twice a day after my iron pills. Essentially, how this will work, is that I'll basically have the runs forever. Whatever, i don't really care. Everyone has liquid poo now and then.

She said that the reason why i feel so unmotivated is due to the low iron, and not psychotic issues like i had suspected. So hopefully, with the 2 colace pills twice a day, domperidone 4 times a day, and now 1tsp of liquid poo giver twice a day, i should be nice and....unbunged.

Here's hoping.

On the pneumonia front, I am feeling a bit better. I say 'a bit' because i never felt sick in the first place. My doctor listened to my lungs of gold today and said they sound a lot better. I said the rotten cauliflower taste is almost gone, and I'm not coughing up goo anymore. Not that i was coughing up a lot of goo to begin with, but post-tx, you don't wanna cough up goo. So i have a 'script to get a follow up x-ray next Tues, and a follow up appt with her again on Weds to see how I am fairing.

And then i should be all fixed up in time for my one year assessment! YIPPEE!!!!!!!!!!!!!!!!!!!!

Um what else?

I'm suprisingly not sleepy today seeing as I was kept awake by sternum pain all night. Stupid cereal box *squint*. Thankfully, I am held together by a sturdy peice of wire.

Me thinks that is all.

Wednesday, July 14, 2010

All Good Things Must Come to an End


So i went to the docs yesterday to see what was up. There was a small amount of brown goo in the morning but it was like, dots of it. Of course. So off I went, and the doc figured it most likely was a mucus plug since I had isolated pain, and the brown goo had more or less subsided. Temp was good, wasn't short of breath, PFTs at home were steady....

Either way, i was prescribed 10 days of Avelox antibitiocs.

But of course, being a tx-er, it's not that simple. I got 3 requisitions: 1 for goo sample containers to bottle up any precious brown goo that i may harbour; a second req for an x-ray; and a 3rd req for PFTs. All of this of course will be faxed to TGH and compared with all my previous results.

So far, no results. But one.

My PFTs.

They are down.

To 79%.

Which i don't understand, since i'm not out of breath and i feel fine. It could be totally due to the fact that all machines vary, but who knows. Either way, i'm bummed out and the person who i don't want to tell is my dad, b/c he'll sigh and get all huffy and worry and it gives off the impression that it's my fault. Just thinking of it pisses me off.

The only good thing that's happened to me today is the discovery at the PFT place that i've lost 2lbs.

This effing sucks.

My doc called me with the results of my x-ray: PNEUMONIA.

I've never been so elated in my life. One would think your heart would sink upon being informed that they have pneumonia, but rather, mine lifted, so high that it actually sprinkled happiness on other people. I want to kick babies, throw myself against walls, eat a lot, and scream as loud as possible in celebration. BECAUSE IT'S NOT REJECTION IT'S JUST PNEUMONIA WHICH CAN BE TREATED WITH MY LITTLE ANTIBIOTIC FRIEND CALLED AVELOX!!!!!!!!!!!!!!!!!!!!!!!

WOO HOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, July 13, 2010


So Sunday night saw me, Katey, Krystal hauling ass on a 4:10 Greyhound to TO to meet up with Elwood so we could venture over to the ACC to see the one and only, fabulous, LADY GAGA!
As seen from above, (as telling as 5 pictures can be) we had a blast! If you love Lady Gaga and ever get the chance to go see her: GO! She is even better live than on her record. She sings all her songs live and has an amazing voice and is just full of so much energy and everything! Katey and i bought t-shirts too, woo hoo! The concert ended at 11pm and saw us cavorting down Yonge street passed Union Station, taxi cab after taxi cab, hoards of people and the like, and finally to a cab driver who had no idea where the bus station was. *rolls eyes*
Clearly, we made it home. And i'd do it all again. There were lots of stairs at the ACC and i did all of them and was never once out of breath. WOO HOO! People were dressed outrageously and it was fabulous, and my friend asked me what i wore. I told him i dressed like a muppet.
What else? Sunday morning also saw me waking up with horrible pain in my lower left lung. And coughing up brown/slightly bloody goo. But it only lasted sporadically throughout the morning and stopped. But there was this horrible taste that accompanied it: rotten cauliflower. Ugh. So gross. Monday I woke up fine, but had that horrible taste whenever i breathed out, so i bit the bullet and called my doc and got in for today at 4:30. Today i woke up and coughed and there was nothing, but then some more brown spots showed up, same as the gross rotten cauliflower taste, and pain in the same spot. I dunno what it could be. I'll prob be put on antibiotics, that's for almost certain, but i don't feel sick, and i'm not out of breath, and i don't have a fever or anything so...
It has been really hot this last week - and humid, and i'm wondering if maybe that made things occur? because in all my x-rays there has been a small spot of mucus in the bottom of my left lung, which is where this is coming the humidity stir it up? Who knows? I feel wonderful either way, have been walking, hiking, biking, not out of breath so...
AAAAAAAAAAAND as always, the stupid anemia *scowl* which can cause you to bleed in bizarre places so who knows? I'm a mess. I'm falling apart. Must be sewn up to be kept together.

Saturday, July 10, 2010

A Simple Kinda Life

I've been thinking.

As I usually do.

And once again I've come to this conclusion: i want a simple kinda life.

I need to stop comparing myself to those around me, because by doing so, I am just left feeling like a total loser who's going nowhere in life.

While I have friends my age who are going ahead, doing jobs they went to school for, or are on their way there, I need to just stop comparing my (so far) lack of success, to theirs.

So what if i have a friend who's a designer, my sister's a teacher, my friends who are teachers as well, or who generally, have better jobs than me - or jobs at all. It will all come in time.

Do i want to go to school for my masters? No. Not really. I'm kind've over the school dealio to be honest. I'm not academically inclined in the least.

So maybe, just maybe, I will follow through and eventually open my own little tea shop, get a dog and live in a modest little stone house.

A simple kinda life. I like it.

Who cares if i don't own a raging successful business, or become a CEO or something massive like i feel compelled to do. I need to do what makes me happy. And if saving up to firstly, go on my Euro Trip with Evlyn, and secondly, save up for a dog, and thirdly, work anywhere to save up for my own little shop, why the hell not. I just have a vision of myself living alone ( i want to get married but doubt there's anyone out there for me for some reason. Who knows tho?), with my Newfoundland dog, together, in a little stone house, with a massive garden all around in the country, being the cool aunt to my sisters kids when she has them.

Maybe i'm just retarded. Who knows.


Yesterday was spent all day with Jenna. Yes, Jenna who fled to the Wilderness. She was only back here for a day before going up to Ottawa and then Niagara to see her bfs fam jam for a week, but it was great to see her nonetheless. We spent from 9am - 1:30am together, having breakfast, mall walking, lunch, downtown touring, Bollywood Bistro-ing, and then Bowling with everyone to cap off the night. It was grand.

Tomorrow, me, Katey, Krystal, and Elwood are seeing Lady Gaga in concert! AHH! This revelation elicited a loud "FUCK YOU BREE!" from DJ at the bowling alley last night, because he wants to see her "so bad", so bad to the point that he'd ask his grandma for $500 to get tickets from a scalper. Who knows? Will we see him there in all his glory?

So that's all for today. I like dreaming, and hope to make this a reality. I'm off to read then take the girls to the park. I'm also talking to my friend who just told me a schizophrenic is roaming his street up and down, so I told him to call the humane society just to be safe.

Au revoir.

Monday, July 5, 2010

Like woah!

WOW! Lots to write about!

Where to start? *scratches chin philosophically*

I'll start with the good/weird.

I had a dream this morning that I got a second lung transplant. I went in for a regular appointment and the next thing I know they tell me that I need another pair of lungs, so i'm immediately re-listed and the next thing i know is they tell me, "we have a pair of lungs for you". A pair that is apparently better than the ones i already have? So i'm wheeled in, get the surgery, recover uber fast and have no pain or anything. I was only out of surgery for like, an hour and I was completely lucid and had no pain and was walking and everything. The next week after surgery i'm at a baseball game pitching windmill and told myself i probably shouldn't be using my arms so violently b/c of my incision/sternum (i used to pitch). THEN me and the fam jam end up in New York at the top of the Empire State Building and we're doing the stairs and it's effortless, but it was in the middle of a terrorist attack or something?

Anyways, point is: i got another lung tx. How weird.

But even weirder is this: i got a text from Alex this morning telling me that our friend Hattie got the call for lungs! She was wheeled into surgery about 15 minutes ago! How crazy? Did i intuitively know? Mayhaps!

But I also beleive that this dream interplays with a fear of mine: a fear that I could get sick again at any point and not realize that i'm sick. Does that make sense? That i'll get sick and not recognize it? And be caught off guard? I hope not. Blah.

Either way: woooooooooooo spidey senses!

And speaking of spidey...I had to take the Heidi-Speidi to the vet today. Heidi has been assigned the new name of Pee-pee cat, since lately she's taken to randomly peeing everywhere.

Here are some examples: the hall mat, the kitchen mat, the laundry room mat, the bathroom mat, the family room carpet, the living room mat, my mum's fur coat, and inside my favourite ever purse. To name a few.

So off to the vet the Pee-pee cat and i went at 8:45 this morning. I always feel a little embarassed when i take her to the vet b/c she's so scraggly/homeless looking. I can brush her all i want but she still looks that way. She's always looked like this, no matter how much i brush her. And she's got bare pink patches above her eye that have always been there. And she has random scratches on her face from her nails and Zoey being mean to her. Oh, and she gets sleepers in her eyes too and they tend to run down her face, but i had the forethought to clean her face up before presenting her to the veterinary world lest i be seen as a horrible pet owner who doesn't give a shit about their precious cat.

Anywho. The bill came to $326. Thanks stupid HST! $326 and all they did was blood work (gereatric screening), an overall exam, and urine sample.

So far, here is the verdict:

She has really bad teeth.

She is 2lbs underweight.

She has a heart murmur.

And a mishapen iris.


My poor Heidi-Speidi. My poor, old, decrepit Heidi-Speidi.

So now we sit and wait until the blood results come back. I looked on the age chart in the examination room and saw that a feline of 16 years is 80 human year. Which is a funny thing because i love my cat to peices, but i'm not overly fond of old humans.