My Double Lung Transplant

Monday, August 30, 2010

Does this make you happy?

Below is the list of shit I will need in order to do these injections. Injections which are allegedly made to make my life easier. I will copy and paste the 2 attachments I got. Lemme know what you think.


As soon as possible after your first visit, phone Medicalmart at 905 624 2011. You will need to set up an account. These items will be delivered to your house. If you spend $100 delivery is free.
You can also order similar supplies via websites or drug stores. Prices may vary.

The cost will be approximately $1.75 per injection. If you have private health insurance you need to know that some subjects have been successful in having the cost of their supplies reimbursed. It depends on the individual’s policy.


• Cat # 113 MM 05507 box 200 alcohol pads. Or you can buy cotton balls and rubbing alcohol at any drug store.
• Cat # 308309661 box of 40, 20cc luer lock syringes (optional)
• Cat #308309604 box 100, 10cc syringes
• Cat # 280SVS 25 BL surflo winged infusion kits (25 gauge) 12 inch tubing
• Cat # 308 305195 box of 100 18G x 1” needles

Walmart will supply sharps containers free of charge. Pharma Plus and Shoppers Drug Mart may also (depending on the store’s individual policies)

Hand washing and clean technique will be essential. You may prefer to use PURELL hand sanitizer rather than do prolonged hand washing.

Insulated lunch bag to travel with





650 Sammon Ave
K Wing, Suite 404,
Toronto, M4C 5M5


You will start the week after your last intravenous infusion of gamma globulin. Ideally this first day of training will be a full day. Three infusions will be given subcutaneously (under the skin) on this day. The first will be given by the RN, (myself), the second will be given by both the RN and you, and the third will be given by yourself.

If you feel comfortable and confident with your ability to self-administer your injections, the visit schedule will be as follows:

1 month
3 months
6 months
1 year.

At each of these visits you will be given a requisition for blood work and a prescription to pick up Vivoglobin for your home infusions. This will be picked up either from St Michaels Hospital or the hospital closest to where you live after your second visit. Details of the pick up will be discussed further at your visit.

At each visit you will bring the vivoglobin for that day’s injection and your infusion log book which you will be given on your first visit.

At all times you will have a 24 hour contact number and as many visits as needed to be able to do the procedure safely yourself.

Costs and Ordering Instructions.

You will be given enough supplies for ONE MONTH.

Supplies can be ordered from Medical Mart. Details on how to order will be given at your first visit. The cost will be approximately $50 per month.


Many people feel better if they bring along a spouse/friend to the training visit. There will be a lot to learn and four ears are better than 2!

As you will be taking a lot of things home, please bring a bag to carry these things home. (About the size of a carry on bag) If the weather is hot, please bring some gel packs.

You will be given a consent form to fill out. This is like a letter of information or a contract. We would like you to try the subcutaneous infusions for a t least 6 months. It takes about this long to become completely comfortable with the process.

You will be given a lot of teaching and an information binder to take home. You will have to fill out an infusion log each time you give yourself an injection. It is easy and you will be shown how to do it.

Are we having fun yet??


I am just so fucking frustrated. This was supposed to make my life easier, not make it more insane. The injections were supposed to obliterate the need for montly IVs and time away from work but instead it obliterates nothing and takes me away from work!!!! *bashes head against wall*

I would like to fall into a well. I would like to fall into a well and drown and make this all go away. But now i feel like i have once again fucked up royally.

And it's a 6 month commitment nonetheless!!!!!!!!!!!!!

Saturday, August 28, 2010

Congrats, we've officially stopped sucking

I'm starting to get excited about school and things in general. I have 1 course left and then I can graduate. 1 course left, and it's a first year. I checked the university bookstore site today and the book is $150. Oh uni, you never fail to rip students off. And luckily for me, it's just one textbook, and none of the additional shit like when they throw a bunch of papers together, bind it, call it a textbook companion, and charge you $100 for something you can get off the internet or smuggle from the library.

I am happy to be going back and partaking in university like a normal, healthy person. Because my 1st-3rd years all I did was go to class (when i felt well enough) and come straight home. I am excited to go to campus and be a part of it all once more.

And also: I GOT A JOB. And not a conventional one. Get this: i got a job DOG WALKING full time. Yeah, I know. How cool is that. And i can wear whatever I want to do it, and go to my night class Thurs night, and hopefully *fingers crossed* fit in my Trillium/RecycleMe volunteer stuff when they need me. I am worried this won't sit well with the new boss, but hopefully it's not a huge issue.

So yea, things are normal now. How weird is that? And i'm excited for everything. And I'm getting hair coloured again today. While i looooooooooove my red hair, i think i'm going to go more towards my natural, light red, since my roots are growing in and they look gross. We'll see what I come up with!

So yup, i'm a normal person now, and I don't feel quite so lame as I did before. Like i said to my friend Robert yesterday, "Congrats to us, we've officially stopped sucking. It only took us all summer."

Wednesday, August 25, 2010

More medical crap

Why is it that the most stressful part of medical appointments isn't the appointment itself, it's how you'll get there?

I havent really mentioned this aspect of myself before, so I will elaborate now.

I get IVs every 4 weeks - everyone knows that - because I was born with no immune system (ADA SCID it's called). I have been getting these IVs since I was 5 years old. How it works (more or less) is basically this way: you donate blood, and they put it in the bloody spinny thing that separates plasma and crap from other crap and single out the crap that I need - the immune system crap, the T and B cells. I get the the immune system T and B crap. And no, it doesn't look like blood, it's clear, and I do find a grotesque sense of joy as I watch it infuse into me. And yes I can feel it, because it's cold.


Finally, after the last 20 years of IVs, shitty veins, and finally a port, they've invented a new way of getting the stuff (IVIG): instead of IVs every month, they have managed to make it available in self injection form. HURRAY. This stuff is called vivaglobin and you can learn about it (and watch an incredibly long video) here:

So my immunologist has been suggesting that I try this little ditty out for the last year, but since I was fresh out of transplant last year, it kind've wasn't the right time to introduce something else into my system just yet, seeing as I was still mastering my new meds and the like. Well now, a year out, i felt it was ok to venture into a new world and will be giving it a go.

So i got a call from a chick named Loris this morning, informing me of my training session on Monday Sept 13th at 9am. A 4 hour one. And i need to go to my local hosp and or blood bank the day before and bring with me 3 vials of vivaglobin. How big they'll be I don't know, but luckily for me I have a knack for massive purses so i'm sure my trusty red purse will be sufficient enough to cart around these gems. But here's the kicker: how the fuck do i get there? This appointment isn't at TGH or Sick Kids, or Princess Margaret, which are all across the street from one another, and a block away from the bus station. It's not at Toronto Western which is across the city but accessible through the TGH (free!)shuttle bus system. It's at Toronto East, a land I have never been to. I've googled, and can get there by street car, which I've never taken, or Subway, which my friend tells me "if u get on the yellow line up to bloor younge station, then go east on the green line to coxwell station then ur just a couple blocks down from the hospital" because that doesn't thoroughly confuse me enough.

Did i mention that this appointment is at 9am?! and i'd have to fuck around on the subway system pretty much an hour before that? This means I'd have to catch the 6:30am bus to get into TO at 8am.

Or, I could take a cab, if i wanted to pay $50.

Or I could drive, and risk getting lost, getting off on the wrong exit, getting stuck in traffic, screaming, crying, and being scared because I've only ever driven to TO ONCE in my life b/c i depend on the bus.

I'm sure by Sept 13th i'll have this sorted out. But for now: seriously?!

Monday, August 23, 2010

Bon Fete a Moi!

Petite bebe moi

Today is my 25th birthday, and while I am both excited and slightly scared at being a quarter century years old, I am embracing it as best as I can!

In my 25 years I have so far accomplished the following:

1) a bone marrow transplant (thanks mum!)

2) so far defeated a rare immune system disease called ADA SCID (apparently lethal if not treated)

3) devoured asthma

4) devleoped and destroyed bronchiectasis and subsequently

5) gotten a double lung transplant

I'm sorry, but who can say they've accomplished all that?

Yeah, you're jealous. Thought so.

Today the realization struck me: that this is my first birthday since I was 17 years old not being sick; not coughing, or battling some infection, or in some form of chronic pain. It is my first birthday since I was 17 where I didn't have to do nebs, or some form of stupid physio (PEP mask, beating).

Last year when I turned 24 I was 16 days post tx; I couldn't turn my torso, couldn't shower alone, I couldn't even open pill bottles. My biggest worry and fright was that I would fuck up my new meds. Remembering what to take, how much to take, what to take what with and what not to take with them, when to take certain ones, how many times a day to take them, was the most daunting task. I was convinced I would never master it and as a result, end up dying as a result of mental fuck ups.

But alas, I prevailed. I am now 1 year, 16 days post tx, and I can clearly and competently self-medicate. I can clearly open my pill bottles. I can turn my torso, shower, dress myself, lol. Today was different: I woke up at 8am, got ready, dressed, and beelined for Timmies, came home, self-medicated, and most importantly my favourite indulgence: played piano.

The weather is slightly cool but humid, and that makes for an interesting feel to The Old Victorian: seeing as it's 110 years old, it's a Woodland instrument and as a result, when it's humid, it sweats. It's not a gross feel, it just feels damp, and it also gives off an old woody smell that I love. So I sat with my tea and played. I played Fur Elise, Good Enough, Breathe No More, Tourniquet...and a ton of other songs. There's something about sitting down at the piano with all the windows open and just feeling free. It's cathartic - a stress reliever, and it's completely relaxing.

In non-related birthday move, I've officially stopped being a complete mental fuck when it comes to the transplant games and have sent out some emails in regards to fundraising and the like. There is another tx recipient in my city and so far, it looks like we will band together and scheme some ideas for Sweden. YAY!

Still waiting to hear back about mentorship from TGH....could be a while I guess. Oh well. I've contacted two people but havent heard back yet. Patience I guess.

In other news, dare I say it? Well, fall is approaching. Here in Ontario - and maybe even the northern half of North America, wishing/being excited for fall is kind've like living on the edge of fear, because you know that by doing so is somewhat like unleashing a beast: fall is exciting, it's a time for harvest, for snuggly clothes, Thanksgiving, fall-y smells, leaves, beautiful colours, rainy days, windy days....but there is a price that proceeds this: winter. By being excited for fall, you are basically being excited for doom because fall unleashes winter eventually. Fall cannot stay around forever, and winter is a bastard that can sometimes sneak in early and stay longer than is strictly necessary. For all I care, winter may as well fuck off and die and never rear its ugly frigid head, but alas it does. Winter my friends, is the Spawn of Fall. I love fall, but I am hesistant to welcome it sometimes.



Happy birthday to me!!!!!!!!!!

Saturday, August 21, 2010

The Great Escape

One year ago today I escaped from the hospital, aptly scaring the shit out of my parents upon the revelation that they would be re-admitting me to their homestead 2 short weeks after having a transplant. I could not walk but 3 feet, and was essentially like a helpless baby, but release me the hospital did, to wreck havoc and carnage to the world at large.
The above pic was taken exactly a year ago, and you can see the bags of meds and other medical paraphenalia flanking me and my wonderful wheely-chair.
I remember my last day in the hosp. There was a tornado outbreak in Ontario and it was my first day outside. It felt like 40*C and i had on sweatpants and a sweater, and was sitting like an old person in my wheelchair with an IV bag on the back of it, as the sky turned olive green and lightning streaked the sky. I didn't really care that i was a quisessential lightning rod, i was just happy to be outside in my favourite type of weather.

Friday, August 20, 2010

Oh lungs, but I do love you....

This thought entered my mind as I wandered the downtown streets of TO yesterday like a vegabond, as i completed my final day of annual testing. It was the 4 hour long radioactive egg eating day and I was making my way to the muchly-anticipated Campbell House on University Ave.

There i was, in my ripped jean shorts, old sandals that my mum hates, red purse (which happily broke on me on monday), purple light knit sweater and grey-blue hat. I had not a care in the world; i had nowhere to be and no one who needed me. I could breathe. I could walk. The sun was shining and that it all that mattered in that moment.

A whole year.

I frigging made it.

Monday the 16th saw me rising at 5am to catch the 5:55am bus to TO to begin my annual appts. I've gotten most of my results back and they are as follows:

blood work: normal. And i mean normal as in it doesn't look like i'm on any medication kinda normal. Kidneys are great, liver is great, everything else is great. Life is just fucking great.

bone density was a tad down, as to be expected from the pred, so my doc is gonna book me with a rheumatologist or something to see if there's anything i need to go on. she's not worried, and i'm not either, but seeing as i'm active my bones need to be good!

x-ray was nice and clear. and i saw it myself. it was amazing and a sight i thought i'd never see!

finally pfts: Hear ye, hear ye, pneumonia can lick my ass because my pfts came in at a whopping 92%. weeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! i was sooooooooo happy to see that, seeing as Monday got off to a rough start...

Somewhere in between my x-ray and blood work i lost my assessment package. Anyone who's had a tx most likely receives a detailed, multiple-paged package in the mail indicating which days you are needed at the hosp, what test you have, what time, what day, and where it is. It tells you if you need to starve, forfeit meds for the test, show up early, apparate out of nowhere, fly in on a broom, or bring a change of clothes. So as you can see, not losing the assessment package is imperative.

And I lost it on the first day.

And i don't know how.

So after scouring the places i had visited in the hosp for my assessment package (and PFT results), i finally gave up, and went for my 6 minute walk.

And that's when my purse broke.

Not one, but both zippers fell off. And i didn't know how to put them back on. So i struggled, gave up, did my walk test, located a wrap to eat, and found a spot on the grass to eat it and attempt to fix my purse.

After an hours worth of struggles and strange looks, i successfully managed to fix 1 zipper, which was enough to keep my purse closed. It was then time to head inside for clinic. So i gathered my shit and stood up and made my way indoors...


I noticed my ass was soaking wet. Somehow i never noticed the ground i was sitting on was soaking wet, until i stood up, so i walked up with a soaked ass all afternoon.

So clinic was clinic - i waited 2 hours. Xray looked good, ct was good, though there is a small spot that they saw and biospsied the following day. No worries though. I mentioned wanting to be a mentor to tx ppl so my coordinator gave me names of who to contact, and I also told her about the tx games and the tour with eve. she looked at me and told me that contiki tours are notorious for being 'booze cruise' types, and i assured her that i wasn't inclined by nature to drink so she had nothing to worry about.

I ended up spending the night at the Delta with my mum and sister since I had a bronch the next day and needed to be there at 7:45am. So we had a girls night and day.

Tues bronch was horrible. I was awake for the whole thing and felt everything, but I couldn't help but be in awe as i watched the live version of the xray, as the little scope snaked its way through my airways and snagged peices of lung. What was even cooler was that I could see where I was wired together, and my speculations seemed to be correct in that I am only wired together on one side, the left, and screwed on the right. It was pretty wicked to see, and I wish i hadn't been so out of it that I could've lingered in the moment a little longer and had a better picture commited to memory than I do, but oh well. It sounds romantic and in all honesty it's painful as hell and had me thrashing and flailing all over the table in my semi-stoned state of mind. BUT! As a result of the bronch, i had a gross/cool thing happen last night! After walking the dog i coughed up a huuuuuuuuge glob of semi clotted blood. And we're talking massive. If it wasn't for the fact that its texture was horrid, i would've taken some time to inspect the little gem, but instead had to cough it up and out. I would've loved to see it though. And yea, I'm gross, but i know a few people (AMY (glare) who would appreciate this peice of spectacular info.

Afterwards I made sure that things looked good from the docs perspective. He said the little spot wasn't an infection as there was no mucus, most likely wasn't a tumor since everything is normal, and could either be fungas (boo, but better than a tumor), or just a naturally occuring spot, to which i've deduced to be somewhat like a mole. It's there, and generally harmless, but should have an eye kept on it.

So that was the bronch. I wandered around downtown with my mum and sis afterward, slurring my speech and purpetually stoned out of my mind, trying not to vomit all over everything. I did however, see Hattie Monday and Tues and she looks fab! A few small bumps but those are to be expected!

So yea, now I'm here, with my tea, my Vanity Fair and Marie Claire magazine, with the windows open and chillen out.

And I am breathing.

Oh lungs, but i do love you...

P.S. You'll notice that i changed the pics. Or maybe you didn't. Well now you do, so fucking look at them. If you look under the 'about the blog blog' section you will notice that I aptly changed the pictures of my precious cats, to include myself in them. You will also notice that yes, in the picture of me and zoey, her mouth is open, and no, that is not her attempt at smiling but rather, she is screaming.

The first pic is my chocolate nephew, Finnegan, aka Finn, or the Finnesaur, or Finnesaurus Wrecks. Look at his beady little, glowing eyes. Full of evil, just waiting to knock shit over and bark at you for no reason other than the fact that you're looking at him and refusing to play with him. Ah bless.


P.P.S *for anyone who cares*, Titanic is falling apart:
Anyone who knows me knows i love Titanic, and all things Titanic-y. This makes me sad :(

Thursday, August 12, 2010

Coulda been a doctor - or something

Today has been busy, and it's only 10:28 in the morning.

Everything I had to get done, I did in under an hour.

I woke up and dashed into the blood lab, with my 1 year req in hand. Being that it was 9 am I brought a book just incase the place was backed up with old people. Luckily for me, there was no an old person to be seen, and I was the only one in there. I was told to go into room 1 immediately where I sat and waited while they looked over my req.

"Are you fasting?" they shouted.
"Yes - I always do when I get blood taken" i responded.
"When did you take your meds last?"
"9 last night"

So it always goes...

Soon enough a new blood-taker lady came in who was nice enough, but she kind've lost me when she looked over my req - right in front of my face - and inquired, "Are you used to having blood taken?"



For real?

No, I'm not used to having blood taken. In the event of dying and subsequently needing a transplant, they never take blood. They save that for later when you're all well and better...In fact, I've never so much as seen a needle and have no idea what you're talking about. And please, blood-taker lady, stop staring at my port, for it is merely there for decoration and nothing else. And no, I don't have a scar from my transplant, but I do have a line that looks like a scar that I drew on myself one night out of sheer boredom.

Pft. Some people.

This kind've took me back to the time I had a bronch and the nurse forgot to put heparin in the line before she removed the needle, after I told her twice to do it. I should just leave this shit up to myself since you can't rely on anyone else to remember.

And speaking of not being able to rely on anyone...

I was at the pharmacy today picking up meds and inquiring about the Trillium Drug Plan (since I'll be 25 in two weeks and thus cut off from my parents drug coverage - weeeeee not). The pharmacist guy - who again, is nice enough - was going over my meds and I was telling him what I can take them with, what I can't, and blah blah blah, and he laughed and told me that I could probably be a pharmacist to which i thought, "Probably....wait: why am I trusting you with my meds again....?"

You will be shocked to know that at any point I did not think "you fucking idiot", and actually, the word 'fuck' never sprung into my head when referring to these people either.

So yes...all of this, and all of these wonderful thoughts, invaded my brain in under the course of an hour. I am now able to sit and enjoy my tea as I wait for lunch to roll around so i can pick up my sis from work, and then go to another appointment for immunology.

And while we're at it...I may look into changing my background again.

Don't hate.

Monday, August 9, 2010

Brain Purging

It's time for me to get my shit together. Get my ass in gear. Start moving forward and stop living in the past. Get out of this lazy funk. That's one major downside of transplant, is that you get used to living and having all this free time, that when you actually need to do things, it's hard to find motivation to do it.

Things I need to do:

1) My OGS volunteer work

2) Job hunt - which i always am doing anways

3) Decide on what sport I will be competing in for the World Transplant Games in Sweden next year

4) Start training

5) Go to the mall and pick up another travel book, since it looks like my euro-trip with Evlyn is out:( I really really want to go, but after the games next summer in June, if i went on the euro trip, i'd be gone the whole month of July, and I need to be here because my sister is getting married next August 6th, and I'm the maid-of-honour so I kinda need to be here. BUT! Eve and I will just do another trip! She wants to come here to Canada so maybe we will do a contiki canada tour? Either way, we'll do something

6) Pay fall tuition fees - hate reminding dad of that, ugh

And then there is the immediate stuff i need to do, like go back to the docs for another antibitic. I'm not sick again per ce, because after pneumonia i went on an extra 7 days of Avelox because i was coughing a bit of shit up, and i wanted it erradicated. We had a feeling that it wouldn't work, and that i would begin to become resistant to it, and that is the case. I feel like the Avelox worked abit, but there is still a small bit of mucus in my main bronchus/trach and i want it gone, so i'm going in for an 'emergency' visit today to get something else....It works out, because i also discovered a nice massive bit of heat rash on my scar. Wonderful. Beautiful. Amazingly magical. It doesn't hurt, because i have no feeling under my boobs, but it was flaky after my shower this morning and quite gross. So in all actual-ness, it works out, i can kill two birds with one stone: get a new antibiotic, and get a topical cream for my wonderful rash.

Another immediate thing I need to do/already did, was email the woman who has been contacting me for RecylceMe about how I can fundraise in order to go to the games. I'm glad I did it now as opposed to in the winter when time would be coming to a close. Ugh. So much to so much to do. And this is not including my fall course (which is a first year and once a week so really, not that bad) and then be a maid-of-honour for my lovely sis. I need to figure out how to do that, because I don't know how to be a maid-of-honour. Maybe a maid-of-laziness but not maid-of-honour.

Oh yes, I also wrote back to my donor family. Will give it to my co-ordinator at clinic next Monday.

Ok. Brain has been purged. I feel better now.

P.S. Alice got married on August 7th - my one year. And i've seen the pics and she looked so gorgeous that i shed some happy tears for her. It seems like yesterday that we were both waiting for our transplants and wondering if we'd ever get married...and alas, she has! Congrats to Mr. and Mrs. Chris and Alice Vogt! :)

Saturday, August 7, 2010

1 year ago today

On the 7th day, of the 8th month, of the 9th year, a single star fell. And when it did, my world alligned. Suddenly, things had fallen into place for me...

Here I am, one whole year later. At 12.45am on August 7th, 2009, the phone rang.

"Hi Brianne, it's Trillum Gift of Life calling. We have a set of lungs for you. How soon can you get here...?"

And so the journey began.

Has it been a year already? Because I'm pretty sure it feels like yesterday.

So off to Toronto we rushed. We got there at 2am, and I got xrays and the like done. Then we spent the next 16 hours waiting in a frigid ICU room for the go-ahead. I couldn't eat, so everyone around me had Tims while I feasted on ice chips. Finally, at 7:20pm, i went into surgery and came out 10 hours later.

And i've been rockin' ever since.

Only 80% of transplant people survive the 1st year.

For once, I am in the positive side of the majority, and I intend on keeping it that way for a very long time.

On Tuesday I got my donor letter...

I remember walking to the mailbox and feeling sick to my stomach. I knew it had arrived. I read it in the backyard and cried. Much of my speculations were confirmed.

My donor was a man in his early 50's. He was a husband and a father. He died of a stroke at dawn on the 6th of August. And now, he is my hero.

It's crazy what a year can bring...what a year can do and a year can change. I will be wearing my t-shirt today with pride:)

Much love to you all, and especially my donor and his wonderful family (who wants to keep up writing back and forth - how lucky am i?)

Happy 1st birthday to me:)