My Double Lung Transplant

Tuesday, April 29, 2008

Officially listed

There are 3 things that I want to discuss in today's blog:
1) Getting listed
2) Pickles
3) Battery acid.

That list was created in order for me to remember what I want to talk about tonight, and that I don't forget...b/c I will forget if i don't remember to write it down.

First things first: Getting listed! So today I crawled out of sleep at 8 something. First I had to go pick up 2 meds that i ordered in yesterday but failed to pick up b/c i FORGOT like an idiot, so I picked them up and was on my way home when someone's cat decided to dart out of a random bush and try to get itself killed. I screeched the Red Rockets brakes on, clearly loud enough that an pair of people walking stopped and turned around. I stopped and looked back and was relieved to see the little Siamese run from under my car onto someone's driveway. I don't think i hit it at all, but it was soooooooooooooooo close. It was licking it's tail and something makes me think maybe I knicked it - but FUCK, CAT, STAY INSIDE!

So dad and I caught the greyhound at 10 and got to TO at 11:15ish. My dad wanted to go for lunch so we ate at Sick Kids instead of TGH, since Sick Kids is pretty much not even across the street from TGH and is uber close, and has better food. So in we went, and i ordered a sandwich, ditto to dad, and you got 3 choices of sides and mine were dill pickles, round pickles, and chips. We sat down when i made discovery number 1: my bread smelled like beer. I had to smell it twice to validate it. At one point i even leaned across the table and shoved it into my dad's face and said, "here...take a sniff" and he said, "I guess it does."

So i ate my sandwich and began eating the dill know the long ones? So i took a bite and it was honestly really i held it in my hands and studied it, the green skin of it...pickley inside....little circles on the skin....everything....and then it hit me: it looks like frog. It looks just like Howard...the green damp back....the hard back skin of it.....all frog...all death....all sadness and grossness....

I wanted to vomit. I told my dad about my observation and he laughed at me. I love pickles and I don't think I can ever eat them again:( Not for a while at least. Not when they look like frog and my beloved Howard.

So after that, dad and I went to my first appt. I got lots of sheets and info that's way over my head that i've forgotten about. I was told who to call if my pager goes off and i don't know who it is; i can't remember what doors of the hosp i'm supposed to use or where to go, and I know i got other info that i've simply forgotten. How wonderful. How miraculous. How fucking great. Brain you never seize to fail me.

After that I met with the surgeon. We waited over an hour for him to come see us and we found out he had to do an emergency surgery so that was ok. He came in and he was very his late 30's early 40's perhaps. He told me all about the surgery and stuff, and i got 3 sheets to participate in research if i want. One's about vitamin pre and post tx, ones about detecting rejection, and one's about bone marrow and growing lungs. All pose no additional effort on my part so why not do 'em, eh? I signed the forms and was good to go.

I was told I can expect to wait 6 months but may probably be called before that - that as of today i can expect to be called at any time. I was told i'm low risk and that my survival is 90%. I was told that if you look at my CT scan it looks like i have CF (even though I don't). I was told that my lungs are the size of two 2 L coke bottles. I was also told that my lungs are of equal crapness...that one isn't much better than the other but if they look closer, my right lung is slightly worse. I was also told that Bronchiectasis is predominently found in 3rd world countries - so now i have something in common with Ethiopean children I guess(? - and that's a joke don't get offended). It's found more in the 3rd world b/c they don't have the mechanisms and meds to treat things like pneumonia and bronchitis and recurrent infections. So yeah....what else? That's about it.

Tonight Chantel was over and we rented three movies but watched one: Cloverfield. We initially started out watching Juno but when the DVD started skipping we took it out. My converter for my DVD player crapped out and wouldn't work. We made mac and cheese and sat on the bedroom floor of my room and ate it. My hand was sticky which baffled me b/c I didn't think mac and cheese was that sticky but i guess it is? My nose was incredibly itchy too so i kept scratching it. I scratched it a few times when my cheek and nostril started burning. I must have gotten cheese in my pores or something.

I tried to get my converter to work but it kept failing. I turned it over to smack it and the back was all wet. I couldn't figure it out. It was so sticky and i didn't get what i spilt on it - but it was over everything. Chantel looked at it and suggested that the batteries were leaking. I didn't know what she meant since i've never been privy enough to experience that and she looked at it and said, " is", and that's when it dawned on me...

My face was fingers were covered in battery acid...and i had scratched my face with my acid covered hands.....and that's why it was burning! So i rushed to the bathroom and washed my hands and looked into the mirror, and sure enough there was a red splotch the shap of Italy on my a tiny ring of fire...courtesy of a leaky battery.

So now it's a raised bump.

What a day!

Today is also Beka's 21st b-day so happy b-day! That's it for now! I am going to end this with an official count.

Day 1 of being listed

Monday, April 28, 2008

Tomorrow's the day...

Welp, tomorrow is the day that i embark on my trek to Toronto and sign the consent form officially stating that i'm 'listed' - whatever that means. I know that it means, i'm not a blatent idiot, but it's like some underground transplant lingo that when you hear the words your ears perk up and you know what it means.

So yeah, that's exciting. My new portable liquid O2 was dropped off at rehab today, when i was failing to perform jumping jacks in the pool (they looked more like hopping with the odd arm flap). After rehab me and another special person had a meeting with a guy who's post tx and it was great. His lung function is 130% and he's doing a 40mile bike ride this coming weekend. Insipiring doesn't describe it - he literally has no boundaries. I cannot wait until i'm not a lazy peice of shit anymore. Exciting.

Today it seems like most people i've come into contact with had their lunch with a little extra side of asshole. Everyone seems to be in bad, uncaring moods, or they just generally lack to you bastards - cheer up.

Um what else? Well i found out what that traffic jam that was backed up to all hell was on Friday: it was an accident, go figure, not a nuclear meltdown like my spidey-senses had told me. I need to find a new route home b/c apparently accidents happen a lot on this road.

That's about it. I think my sarcasm is ready for bed.

Friday, April 25, 2008

" you have CF or something??"

I was asked this question again today, for probably the millionth time, when the O2 guy came when I called them in despair, pretty convinced that I had somehow destroyed the liquid O2 portable thing. I got liquid O2 yesterday b/c i hate the tanks b/c they are the devil and they weigh a ton. They are the abominable snowman to anyone with lung disease b/c they do not allow you to be mobile - they weigh you down and siffle you out like baking soda siffles fire. So blah blah blah, my RT came, set up the stuff, showed me how to use it, I acted like I understood, and off she went on her merry way, happily skipping along down the drive way, 4 oxygen tanks clasped in her arms.

Today rolled around and I went to fill my portable liquid o2 tank. Honestly, it looks like a mini 3CPO about the size of a thermas (or a 'huge beer' as the O2 guy pointed out today). With liquid O2, you need to fill it up about half an hour before you go out. You can't fill it the night before you go out somewhere b/c it will evaporate - b/c it's liquid. Liquid O2 is stored at -300*C so if it gets on you, it burns, and let me tell you, i discovered that today. I discovered it more so than most people should have the pleasure of discovering.

I went into the garage and attempted to fill the portable O2. There is a weight gage you can attach that lets you know how full or empty it is. It was empty. So i attempted to fill it. When it fills it screams and there's a bunch of mist. The mist and the screaming subside as it fills. You are supposed to leave it on for 30 seconds b/c that's how long it takes. After the 30 seconds, you wait 15 to hook the nasal prongs to it.

So i go to fill it...turn it over, attach it to the BIG liquid O2 container, pull down the latch, and it screams.

It screams and it screams and it screams and it plumes out liquid smoke and starts sputtering and it hasn't even been attached for 10 seconds. I shat a brick; i took it off and it stopped. I checked the weight and there wasn't much in it so i waited till i went to leave to decided to attempt it again. The volcano (as it's actually called) happened again but like, a million times worse.

This time it started spewing liquid (the portable) and it was dripping and bouncing off the garage floor, and as it hit the floor is simmered. It burned my fingers and i thought that somehow, i had broken and killed it. I ran to the driveway and squatted where it screamed and plumed for a good 20 minutes, just in time for my dad to come home and witness the whole thing.

When this happened you're supposed to call your O2 company and tell them so I did but no one was there so i left a msg. I covered it with a towel in an attempt to stop it but to no avail; it 'burnt' right threw it and kept on spewing. The whole 3CPO thermas froze over - everywhere - it froze so much that the plastic froze off in SHARDS and stuck to the faded cement of my driveway. PLASTIC SHARDS! I HAVE OFFICIALLY DESTROYED MEDICAL PROPERTY!!!!


My dad - being the science guy - came to the rescue and said that there had to be a problem with the closing valve. Long story short, when i came home from rehab the O2 ppl had sent a guy and I explained what happened, terrified that I had somehow ruined the oxygen.

And thankfully, the whole thing happened to the O2 guy just as it had me, and I was thankful that I wasn't the cause of the whole fuck up. He said it was the equipment, and i told him to take it with him and fix it b/c I was officially afraid to use it b/c i might blow up. So i went to his truck b/c he wanted to give me a tank and he said the smalled he had was an M6- which is HUGE if you're me. I said it was ok, that I dont' feel well enough to leave the house anyway and their size was the reason i had switched to liquid. He must have noticed that I was huffing and puffing b/c he looked at me and said, " you have CF or something?"

I said, "No...bronchiectasis - but you're close."

"What are your sats?"


"In the 80's"

"You should take this with you..."

*wants to run away*

I really wanted to tell him to STFU and that it was ok but instead he left and I am portable O2-less.

It's ok.

I think that's it for today's drama.

Yesterday my drive home from rehab was diverted when the main road was blocked. It backed traffic up like a bad bowel and it took me an hour to get home. I called my mum and asked, "Is there some fucking nuclear meltdown that I wasn't informed about, b/c i'm pretty sure traffic is backed up all the way to hell and that i'll never get home" and she had no answer. And that was yesterday's drama.

And this is todays....all completely random.

My hand is tired from typing. Good night.

Thursday, April 24, 2008

Damnitt, Alice!


Alice tagged me in some blog chain thing and i have to do it b/c i'm just that nice.

7 random or weird things about myself.

I was tagged by Alice:

*Link to the person who tagged you
*Post the rules on your blog.
*Share seven random and/or weird facts about yourself on your blog.
*Tag seven random people at the end of your post, and include links to their blogs.
*Leave a comment on their blogs so that they know they have been tagged.

1)I'm a virgo
2)I got Alice's blog when she sent me a stalker msg on facebook
3)Before I got sick I danced in 3 separate companies and was pretty friggen active
4)I was the pitcher in baseball
5)I play piano and took lessons up till grade 8 but I can't read music
6)I'm ambidextorous
7)I've never been in the ocean

I'm tagging these people:







I'm too lazy to fulfill the last request. But I guess i'll soldier it up and do it some day - later....but i'll most likely wait for them to check out my blog and see that they've been tagged. And i will sit and wait for them to fulfill the blog chain thing that Alice has bestowed upon us.

Wednesday, April 23, 2008

Put to a halt

Funeral arragements for Howard have been put to a hault.....what since the disappearance of his body and all.

Last weekend when my dad cleared the pond, there was no sign of Howard. He thought maybe he had sunk to the bottom of the pond or something....but is now leaning towards the idea that something came along and well.....ate him (like that bastard ferrel bird who swooped down and ate our fish when we were away at my uncles funeral in August). So needless to say, I cannot perform a funeral while the body is MIA.

It's true, I've sat at my window and peered into the backyard, looking for a spot where i could dig a small plot (too lazy to dig 6 feet - we were gonna do 6 inches) and maybe nail a marker together but that cannot happen now that I do not have a body. So instead Howard is buried in my mind....tho I'd prefer to have him alive:(

What else? Hauled ass to rehab today. Walked on the treadmill for 10 minutes, did some arm bike thing, did a stationary for 2 minutes before my legs crapped out and I wanted to fall off like an invalid and lay on the floor and demand to be scooped up and carried to the nearest chair. I walked the hall twice and did stairs 4 times.

Lowest O2 sats were 88 and highest heartrate was...........156 me thinks. The liquid O2 arrives tomorrow and my RT called both my phone and my cell to inform me she'd actually be here - but i was too lazy to call back and confirm the call.

B/c I'm a horrible person.

But that's ok - I can accept that about myself.

What I cannot accept though, are some things I've had said to me recently. A while ago someone basically insinuated that had my compliancy been a little better than it sometimes is, I would not be in this situation - that needing a tx and getting this condition is essentially my fault. Apparently life is just a game and this is all shits and giggles.

Fucking people sometimes.

Waiting List

So i was dicking around on the internet today when I decided to look at the Trillium Gift of Life Network website. Trillium Gift of Life is Ontario's organ donation organization and it's great. Well I was looking at the stats that provide numbers about how many people are waiting.

Before I tell you that though I have to state this. Toronto General is the only hospital in Eastern Canada that does lungs. So when lungs become available, whether it be in Ontario, or out in Nova Scotia, someone hops on a helicopter and goes to check em out. If they're good, they prepare them for transport and notifiy the recipient that the lungs are good and to haul ass to the hosp.

At the same time, a call could come in saying lungs are available somewhere else, in Ontario, Quebec, Nfld, PEI, Labrador, NB, out someone else would go and another recipient would be notified. This puts TGH at a HUGE advantage, and you can understand why the wait is relatively short. For my blood type I was told the wait is 2-3 months which is amazing.

Even better, is according to the Trillium Gift of Life Network, the wait for lungs in Ontario is only 54 people.

As they say, "Don't take your organs to heaven; heaven knows we need them here."

Thank you to anyone who is selfless enough to sign their cards and give the gift of life when you can no longer sustain life. Through your act of kindness you're not just saving one, you're saving many.

Have a great day.

Pager has arrived....

My pager has arrived.

The courier guy just dropped it off as Maddy went psycho and barked the entire time at him.

It's soooooo surreal...everything is happening so fast it seems.

It said it was already activated sooooooooo.......I guess i should bring it to rehab with me??

Sooooooooo weird! Is it just me or is everything happening so fast these last 2 weeks? I'm totally not complaining though; i'm finally getting on with my life!

I go to TO on Tues to sign the forms and officially get listed!!!


Tuesday, April 22, 2008

3 months post today

3 months ago right this minute i was freaking the hell out, b/c Alice had informed me that she had gotten her call for lungs - she was all the way across the world in South Africa (and 7-8 hours ahead) and I remember it was mere minutes before when we had been talking about what life would be like post-tx. If i remember correctly, I actually wrote an entry about stupid questions people ask Alice and I regarding the prospect of transplant, and if I was smart enough to figure it out, i'd post a fancy link thing to direct you to that post to refresh your memory.

But alas I am not that technologically advanced inside of my brain, so instead i have a link to Alice's blog on the side of this blog and I shall direct you: -->

Pretty easy, eh?


Ummmmmm i woke up with tremendous pain in my chest, the same place that pain was yesterday except it's magnified by 10 and when i do certain things it kills. I havent really coughed to see what will happen if i do (like if i bleed) so we'll see. Regardless, I will tell them at physio. I don't think it was the pool exercises that have done, otherwise i would be hurting other places. I've had pain in this spot before, last year specifically, and I'm wondering if it's a plug or something else. Either way it's not fun; it's pretty frikken scary.

That's it.

I have to eat.

Monday, April 21, 2008

Tx listing process update

So I spent all day at rehab getting my ass kicked, which is fine b/c at least i'm tired b/c i did something. We were in the pool for a solid hour and i'm really feeling it. When we first went in my sats were 70% on 3L of O2 and my pulse was 114 or something. Once we got moving and the sat lady came again, my sats were 86% on 3 L of O2 and h/r was 117. Then after I was 91 so.....blah.

I am exhausted but it's cool.

I came home and there was a msg on the phone for me. It was from the tx center and I was informed that the pager would be sent to me free of charge by courier, so it should come soon, and that an appt will be made for next week to go back down, sign the papers and meet with the surgeon. I was very excited. The tx co-ordinator seemed happy to hear from me which was grand.

On Thurs the O2 company will hopefully rememebr to come over to my house and switch me to liquid, b/c I've run out of portable O2. Oh well.


What else? My lungs hurt today - and I'm kind of worried that I may get a bleed or something but we'll have to see how that plays out I guess!

That's it for now. if i didn't feel like i was going to sink into the ground I'd write a little more but i can't, sorry.

Tres tired.

Saturday, April 19, 2008

Beautiful Saturday

Today I ventured outside to the backyard with Heidi speidi. When it's warm out (like it is) she loves nothing more than to lay on the grass in the sunshine and get brushed. Since she's got fur that's nasty and as thick as sheeps wool (I'm not exaggerating) it's the perfect place for me to brush her for hours on end and pretty much, let her fur fly. It's pretty gross if u brush her inside b/c it gets into EVERYTHING so outside makes a nice safe-haven; plus, she gets to roll in the sunshine and fulfill her life's passion: eating grass.

I read that cats eat grass for medicinal purposes: for upset stomachs (it settles them); if they need vitamins; and it induces vomitting if they have eaten something that needs to be brought up and can't be digested.


So there we sat, Heidi speidi and me, in the glorious sunshine, with 2 of my asshole dogs acting like they've never seen a cat in an outside environment before. They got excited and couldn't stop smelling her - like she was some new thing or something. Heidi hates when the dogs fuss over her, b/c she's easily scared and timid. She hates sudden movements and loud noises, so you can imagine how she felt when my dad came out back and started a small chainsaw to trim the rose bush back.

She freaked out; she shit a brick and instead of running under the deck (which she's done, or she'll run behind bushes and hide forever), she ran up the deck stairs to the sliding door and i let her in the house. She flew to the basement where she's still hiding. Poor thing.

Zoey, being the jealous cat, saw the brush and made an immaculate display infront of me by rolling and looking pretty. She LOVES to be brushed, so i brushed her (even tho she doesn't need it) and she rolled and acted pretty. When i asked her "Are you a pretty girl?" she meowed and rolled over. Now if only she wasn't horrendously fat I wouldn't be so worried. But she is fat and no amount of diet food can change that. I finished brushing her and gave her the brush to hold and she rubbed her cheeks on it. When she's done brushing herself she lays there and bites it.....just b/c apparently.

I woke up today and felt like I had fallen into an industrial mixer. My sides hurt, the tendons above my heels hurt, and i'm sure other portions of me are so sore that they've lost all feeling and i just can't tell how much pain i'm in from rehab yesterday. I went on the bike, the treadmill, some arm pedel thing, i squatted, i marched on the spot, i walked - i did everything. I'm a superhero - an incredibly small superhero. I feel great tho, like this pain is a result of something GOOD instead of being in pain b/c i'm lazy and havent moved like a cow.

Um....what else? Thank you to all 5 people who sent their condolenses about Howard. I am feeling better but there is a twinge of sadness inside of me that yearns to see him sitting at the pond. I don't know what it was about him that made me so - possessive and motherly (i don't even know if Howard is a he, thanks Steven, but my spidey-senses tell me Howard is a he). When I told my dad the news at lunch yesterday he was upset. I don't know how common it is, in the middle of a rural city, nowhere need natural ponds (our pond is dad-made) or anything. Sure there's a strip of forest near by but no the fact that Howard found our pond and chose to spend the rest of his life with us spoke to me. Here he was - this frog, on his own, living in an unnatural, manufactored backyard, but he was living. He was living against incredible odds. He could have hopped away but he chose to stay, he stayed b/c it was comforting and he knew he was safe, and he didn't want to change that.

But look what happened, maybe he stayed too long....he died b/c he probably didn't hibernate correctly. Excuse me for going all university on you but i see a huge correlation between Howard and my transplant situation. Howard is a symbol of hope and change. Had Howard moved somewhere else - albeit unknown territory where survival isn't guraunteed like it is here, but resources in my backyard are limited - he may have survived longer somewhere else. Had I not taken the leap and gotten listed, i'd continue to stay in my comfort zone - where resources about getting better are limited but I know my way around and it's comforting, but survival is only guarunteed for so long. Instead I'm stepping into unknown territory where survival isn't guarunteed for all but your life will be a hell of a lot better. I know I will survive on the new side and I am excited.

How odd is is that the day after i was told I was going to be listed - the day i officially moved forward - Howard died - in the spot he never left b/c it was comforting and it was the only life he knew. Had he moved and gone somewhere else he may still be here....

And had I stayed in my comforting spot, I may not be for much longer...

Friday, April 18, 2008


I went to the pond today.

I looked down and saw no change.

I found a stick to clear some leaves off of him...

Howard is dead.

And i'm actually crying b/c of it.

R.I.P Howard
August 27, 2007-April 18, 2008.

Thursday, April 17, 2008

If things just stay the same, they will never get to change

Welp, since news broke that I am going to be listed, I have had a few thoughts bubbling in my head. So why not share them.

I got to my appt and Dr. Eric Clapton and i sat in a room burried in the bowels of the hallway. He told me we had to decide if i was going to be listed. On one hand, I am still considered a little early (b/c i'm not sick with infections blah blah); on the other hand, my quality of life sucks and I can't do next to anything. He agreed and listened to my point about it not being a smart move to wait for me to venture into full throttle sickness what with my inability to fight off infections and all. So he said, "Well....I guess we'll go ahead and liste you." and he smiled.

But i didn't.

I just looked at him. I knew he was going to say it....but it was like a dream. It was scary. I want this so bad but I couldn't help but wonder if i was stepping into a death trap. I knew i could turn back and say, "I think I can wait!" but I didn't. I didn't b/c even though i felt ok I had to remind myself that for 99% of the time I feel like crap, and that if i don't get listed NOW there's nothing for me to do but sit and wait to get worse. And who wants to wait around for that? That's not something to look forward to. I had that life last summer...where I sat and waited and went in and out of doctors office's and sleep labs and respiratory places all the time. I don't want to continue doing that. No one should have to get used to that kind of life style. No one.

So I sat there and listened....I felt like my eyes glazed over and I probably looked stoned....I felt like I was in a tunnel and me and the doctor were getting farther and farther apart.....and that I was drifting off into unknown, chartered territory...

Which I was. And i am. And i have to realize that if things stay the same, they will never get to change. I will continue to sit at 34% (max) lung function. I will continue to be limited in physical activities and I will continue to be tired all the time. I will put myself at risk of developing pulmonary hypertension (which i am afraid i may be developing) and I will continue to be engulfed in a life of limitations and worry.

What is there to look forward to with Bronchiectasis? WHAT?! A one-way ticket to shitsville? B/c i'm pretty sure when I got on this bus i beleived the ride would only be temporary. I didn't think it it was a 'forever' kinda deal. Whatever. I can't worry about that; what's done is done.

In a weird way, I am scared about being listed b/c being listed means new lungs which means c-h-a-n-g-e. As much as i fight and hate bronchiectasis, it is a cocoon of protection that surrounds me; I am used to this life of being holed up and dependent. I know I can survive but it's scary.

I have to break out of this fucked up cycle and move on - so I am ready for the change.

For those not in-the-know

I don't blog just here--> shocking, I know.

But i've had several people ask me what ketchup chips are so i figured I will post a link to Canada's Snackfood guide for both chips and chocolate bars and crap.

Ketchup chips are ketchup flavoured potato chips. We also have dill pickle flavoured chips, and smarties which are chocolate and i think we have more so follow the link and educate yourself:

P.S I'm offended no one knows what ketchup chips are (unless you're Canadian then you know)

Spread the word.

Wednesday, April 16, 2008

Went to Toronto Today

Before I begin, the Titanic sank 96 years ago yesterday, April 15, 1912, and I hope you all remembered the way I did. And if you didn't - then you're a completely horrible person.

Lastnight I finished my last exam of 3rd year. Classes and exams are DONE and I am officially a FREE WOMAN.

I forgot to add that swimming at rehab honestly wasn't that bad. I actually enjoyed it. Yesterday we walked and i got bumped up on my O2 b/c on 2 liters my sats were 80% and my heartrate was 150. Not cool. So i'm at 3 l/m now and i am getting switched to liquid tomorrow.

It is warming up and I am still waiting for Howard (my pond frog) to wake up. So yes, my day started bright and early. Woke up at 6am, didn't do physio or anything b/c i just don't care and i skipped along to the bus stop and caught the Greyhound to TO. Got in at 8 something so i snailed along, got a drink and waited for my appt with Dr. Eric Clapton. We sat down and I coughed a lot - really nice, phelgmy, "i'm-feeling-like-shart-today" kind of cough. We talked about how my quality of life was - that it's crap and it sucks - and that my PFTs bob between 27-34% which isn't much of a difference.

But that I'm not sick.

I told him that with my immune system problem, I don't want to be sick to the point that i'm on IVs and oral antibiotics. When i first got dx with this, i was sick for 6 months prior, and it took 3 weeks in hosp with 4 types of IV meds, 5 oral, and an additional year of sickness and antibiotics at home just to get rid of the infection.

Do i want to wait to get there again?

Is it wise to make an immune deficiant person like myself get to that point?

So i left and went to my other appt at Sick Kids. It was my regular appt. Apparently i went on the wrong day - my appt isn't till Apr 30th but regardless they saw me and told me how much they loved me, which i relished and doused myself in. Turns out my appt WAS today ( i found the card) and that they recored it wrong. I saw an immunologist who was in my room when I was 8 weeks old and getting my bone marrow tx. My mum told me they used to joke that he was my bf b/c i would apparently smile whenever i was told he was coming to see me. I'd frown at my dad b/c he had glasses which I guess scared me He was very very nice and we had some laughs, and he told me that I knew my stuff b/c i was asking great questions. I told him that maybe it worked out for the better that my bone marrow tx wasn't a total success, b/c rejection won't be a huge threat. he said that had it worked, i wouldn't be in this situation.

So i went for blood after that and rewarded myself with a pop, a bag of ketchup chips, and a mars bar.

With that i walked to the bus turminal and got on the bus home.

And that's it.

Oh yeah, did i mention that I'M GETTING LISTED!?!?!?!

Sunday, April 13, 2008

Rehab tomorrow: Physical Activity-->Swimming

Tomorrow they're throwing our decript asses into the pool to see what we're unable to do. I'm sure most of us we'll stand there and begin to mildly suffocate, while I myself plan on huffing and puffing and most likely pass out from the humidity. I don't see how you can wear oxygen into a pool - where most of us probably need us. I can't even get dressed w/o de-satting and getting dizzy, how the Christ am i supposed to stomp around in a pool?

All questions and horrible visions of what could happen aside, I have no choice but to soldier it up and do it. Superficially, at least i know i'll be the skinniest one there, and that's enough to give me great satisfaction. Too bad i'm the same age as my fellow rehaber's grandchildren who aren't partaking in the pool festivities.

Today i went to Old Navy (after i wrote my take home exam, so now i've got 3/4 exams done!) to get a bathing suit. I was gonna get a full-peice but they all gross and completely disgusting so i opted for a tankini. Pretty sure bikini's aren't appropriate for pulmonary rehab. I settled for brown. I probably look like a peice of shit with a pale band around the center. I don't care. We're not allowed to use lotion afterwards either, at least not scented. B/c my skin sucks and dries out upon getting wet (seriously) i'll have to stash my lotion in the car and cake it on when we're done. I hate chlorine b/c it makes me itchy. I can only imagine what tomorrow's pool shenanigans will bring.


So i made my dad put Howard back into the pond. Actually, when my friend asked what that 'abnormally large frog' was in my MSN display picture, I informed her that it was actually Howard and that he is normal sized, i just got a nice close up of him. She's a bio major and told me that they thaw according to water temp, so i stomped down the stairs and told my dad. He told me to go out and do it, so i did. I was afraid that moving him i would somehow kill him or he'd get crushed and she said, 'no, they're resilient little mo fo's' so i feel better knowing I or he won't kill himself.

So i picked up the pool collecter pole thing and put him in...and he wouldn't come off (b/c he dried out!) so i kind of had to bang the pole and he peeled off. He fell into the water on his back and stayed there, upside down, his brown freckled belly facing up, wrapped in a leaf. I stood there, worried i had killed him. I inspected the pole thing and he didn't lose any skin or anything so i know he's alive. If he had been decaying he would have lost chunks and bits of himself and he didn't, so i'm happy. I was afraid that if i turned him over i'd manage to kill him,but i tried to move him over to no avail. so i made my dad go outside and turn him over. He was not happy, but he doesn't think he's dead so i'm happy.

So that's it for today. I have to go watch TV.


I am worried.

Not about me, about Howard:(

So far he hasn't moved or anything, but he could still be frozen b/c i'm sure they don't thaw the first day or even the fist week that it's warm.

My dad drained the pond today (since it's melted snow and smells like ass) and he took Howard out and put him in the sun - on his side, where he's probably crushing and breaking his precious anphibian limbs. Thanks dad for being so careless.

Anyways, he's still laying there...eyes closed...less bloated...I am worried. I actually googled 'frogs thawing from hibernation' and i watched a video. He looks similar....and I am trying to hold out hope. I don't know why i'm so attached but I am. It's not like I an pick him up, squeeze and maul and kiss him (i didn't even know what Howard is anyway). But for some reason, i have emotionally adopted Howard even though all I really do is stare at him and go paparazzi at him from time to time.

If God forbid something happens (again - he's a frog, and I am attached. Do i have a problem!?) I don't know what I will do. Every time we get fish they die; or get eaten, or stolen by some random rabid bastard animal lurking in the distance (like the psycho squirrel who screams when he sees me - that little shit is still alive). Anyways, send a prayer to my frog. I'm serious.


Saturday, April 12, 2008

Just Give Me a Sign

I had to go to the complete opposite end of town today to get fitted for a bridesmaids dress. Yes yes! That's right - I am a bridesmaid! Jess is getting married this summer and I had the pleasure of being asked so of course I said yes!!! It took only minutes for me to get measured and I was there for roughly an hour, what with my inability to stop talking and all.

When I left I got in my car and was pulling my seatbelt over when I saw it across the street.

A bunny. Sniffing the grass and hopping slightly on the front of someone's lawn. It was actually a rabbit but rabbit/bunny is the same thing regardless. I grabbed my phone and called Jess's cell, even though she was in the house behind me. (it's not like i can run or anything!). It took her eons to answer but when she did i heaved out, "Guess what i saw!" and she goes, "What!?" and i go, " A bunny! Across the street - the blue house - on the lawn *gasp*" She said, "Aww really!" and looked out the window (it's not like i turned around to see if she did, i'm too lazy and was half stuck in my seatbelt). So that was that. It was marvelous.

I have not had a sign from Karyn in a while, but I don't think this sign was meant for me alone but rather me and Jess. Actually just the other day I was asking for one and it never came, and today, on a memory making day, where the bride and her bridesmaids are getting fitted, Karyn sent us a sign to let us know that even though she has passed on, she is still here with us. It was great. It was a great feeling to know she's still here and that everything will be ok.

Friday, April 11, 2008

Feeling better - kind of

Lastnight's bitch provided a lot of relief for me. I felt bad and thank you to those who commented.

Recently things have been happening and i've been informed of things that have bothered and upset me greatly. They are bits and peices of things that shake the very foundation of myself and my sense of self peace and I don't like it. I don't like hearing things that make me question my path on life, and that challenge the way i feel about what i've been doing. It's one thing to ask friends over and over for assurance but the most nagging thing is that 'what if?' that creeps back up on you. It bothered me so bad that I had to tell my dad, and he informed me that everything was ok. And i feel tons better.

I had a horrible sleep lastnight. I mean i slept but i had vivid dreams. I woke up with a raging headache and had to get up to take a motrin. I've had a lot of time to think...think about things like life and shit that happens, how some people seem to have it easier....and i sit and wonder and pick my bum over it. And then I realized that other people are just as fucked as I am. They're just fucked in other ways. And that's ok. I live by the notion that 'as bad as you think you have it, somebody's got it worse'.
With SCID, i've always been alone. It's always been a party of one and that's ok with me. I don't mind making up the rules as I go along, and I don't mind paving the way. But I can't stand comparisons. When it comes to being compared to other people, I'd rather separate myself and being alone - and that's ok. When you're alone, you can't get hurt. At the end of the day you have to save yourself. And at the end of the day, you can only rely on you to make yourself feel better.
Enough with the down talk. Sorry.

It's an ok day here today. It's foggy, damp and humid. There are thunderstorm warnings and tornado warnings out all over Souther Ontario, yet up north they're getting a lot of snow. Who knew?

I made my way over to rehab today. Today was a nutritional day. I learned that there were 4 food groups : crap, cancer, heart disease, and confusion. Most of them fall under the category of confusion, a lot of what we eat is crap, and the other 50 percent will give you heart disease or cancer. If you're lucky, you might get all 4, but i sincerely hope not.

I don't really much to post about but I will include some much promised pictures of Howard and my pets. Just b/c.

Howard, after a very long winter. And no, he's not dead: he's thawing.

Maddy and Brooke

Casey; pretty much the best dog ever.

Zoey, where she's not supposed to be.

Aaand Heidi Speidi, looking mad but she's actually not; it's just how she looks

Thursday, April 10, 2008


This blog entry may sound like a big ol' F YOU and to be perfectly honest, it is. It is not meant for any of my readers or anything, but just to some stupid bitch who happened to ruin something completely magical today. This is my blog, and I have every right to vent my frustrations as they happen. If you somehow happen to stumble upon this and read it (person who bothered me) sucks to be you bitch.

This blog predominantly is about my lungs and bronchiectasis and transplant. Rarely if ever do I talk about SCID - my primary condition that led me to develop bronchiectasis in the first place, but today I'm going to focus on SCID, b/c someone (actually 2 people on 2 separate days) have done or said something to completely ruin and annoy me.

I'll start with yesterday. I went to visit someone ( i feel like i've mentioned this....have i?) yesterday, and they worked with someone who felt that they had a pretty serious immune system and wanted my input on what I think it could be/what could they do to boost their immune system. They told me what their symptoms were (you know, b/c i'm a medical doctor and all, what with my almost degree in ANTHROPOLOGY and all), and how they were sick with colds a lot. She wanted to know what she could eat to boost her immune system (b/c it's that easy evidently) and i said 'garlic' (which is true) but that's about it. I said if she was really worried to ask her doc to write a referral to an immunologist for further testing. She said her doc said her problem wasn't serious enough. She then asked about my IVs and stuff and told me that it wasn't long term. I wanted to smack the shit out of her. If it's not long term, then I guess getting gamma for the last 18 years has been a big mistake on my part. Whatever.

Now on to today's incident. Without being too specific, I will say that there is a support group out there for people with SCID. In it is a thread regarding the issue of frustrations. The biggest frustration with SCID is the common assumption that all of us are "bubble boys". While this image has been shown again and again, I personally find it annoying and rude, b/c it has become a form of mockery instead of a key way to identify the condition. Many people echoed this sentiment, until some angry woman stepped in and called us all ungrateful, saying that we should be thankful that we're alive since her child had gene therapy and died.

While that is unfortunate and I find it sad for her, she really had no right to come in and shit on our parade. The group was created as a place for people afflicted with SCID to come and share experiences, vent frustrations, share fears, and get to know other people living with SCID. It was NOT created so people could play the 'who has it worse' game, and it was not created to generate sympathy. To assume that we are alive with SCID without complications is ignorant and quite frankly, a little immature. I sit here, living with SCID, and things are not all hunky dory. I am waiting for a FUCKING LUNG TRANSPLANT, and for you to come into my group and call us ungrateful for venting frustrations over a term is beyond me. First and for most we are PEOPLE - we should NOT be defined by our disease so expressing disdain and annoyance over an unflattering and miscontrued term is not grounds to call us ungrateful or anything else. To also make other assumptions and claims about medical professionals is uncalled for. This is not the group, nor the time, nor the place. If you have issues, speak to someone who can help you - NOT people trying to get on with their lives just b/c you are an angry human being.

Regardless of it you've survived, or sadly passed on, the place was NOT created to compare whose situation is worse. To tell us we are not thankful for living . Do not tell me how to deal with this - I can honestly say that I have been dealing with this LONGER than anyone.

And do NOT tell me to take a deep breath - b/c I can't.

That's it.

Wednesday, April 9, 2008

1/4 DONE

This is the part where we sit in the library and hope we didn't fuck ourselves.

I am roughly 40 minutes fresh out of my qualitative methods exam. While I don't think I failed, it certainly wasn't anything specacular from my end of the deal. I mean i knew stuff, know what i mean.

Currently, I'm talking to Krystal, who is still up in Iceland on exchange for the semester. I told her what a glorious day it is - sun shining, sandle wearing, clothing optional kind of day. It's 18*C (which isn't hot or anything) and when I made this marvelous announcement to her, she told me not to tell her that. So instead I said that I wore a snow suit.

I hope she doesn't catch on.

I'm writing from my university's library. The keyboards are crap. They're the kind that have been used to many times that the keys are heavy and stick when u press down on them. They feel sticky and gritty with illness, and Alice told me to cough on them to which i obliged, noting that i gave it 'an added touch'. Just writing a sentence i can feel the onset of carpal tunnel. My poor upper extremedies.

Yesterday made for an exciting discovery: HOWARD! Floating at the top of our pond, thawing out! I got pictures of him - all green and stuff - bobbing around. I'm pretty sure he's alive b/c every time i'd go to gawk at him he had moved somewhere else. Nonetheless, i went paparrazi on him and snapped some pics which i will post once i'm home.

In other good news: GINA/PEPE is listd and Grantula is having his surgery today. I wish them both tons of luck!

Not feeling too horrible day. I feel like crap and it's kinda humid so i feel like there's no air but w/e. I forgot to mention that when i got my Gamma the other day it only took one poke - with no bruising! I joked with the nurses before hand that if i was lucky i'd get two, but alas my veins prevailed.

Anyways, that's all for now. My fingers are getting numb from working. I need to go burn them in acid somewhere to scrape the germs off of them.


Monday, April 7, 2008

O2 24/7 now?

Well fuck.

Here's the story.

Lately, I'm tired all the time again. Not just "i -didn't -get -enough -sleep -lastnight" kinda tired, I'm talking about "this -sucks- why -am- I- so -tired- i slept -for- 9 hours" kinda tired. It's relentless, and it sneaks up on you. One minute you're fine and the next - BAM! "Well shit - we're tired".

When I wake up, I'll take a couple of minutes to get my brain adjusted to needing to focus. Once that happens, I take my oxygen off and make my way down stairs. About 1-2 hours after being awake, i become tired and it creeps on throughout the day. It's to the point now that i contemplate napping - and I'm not a napper.

When I shower I use oxyen, and I leave it on for about 2 hours (b/c that's how long i dick around for after my shower and that's how long it takes me to dry my hair). I take it off soon after i've dicked around and bored myself soul-less. Then the tiredness creeps up again on me.

It was today that I put 2 and 2 together: tiredness that comes on after taking away oxygen=problem. This problem must mean that i should probably be on o2 24/7. Does that upset me? No. Does it bother me? Not really. I guess i've had an inkling for a while, and since the rehab center is gonna hook me up with some liquid O2 hopefully, i won't have such an issue using it all the time and it'll be lighter for being outside.

I told my mum this revelation tonight when i made tea. I said that I should prob be on it 24/7 and that i notice i get tired after i take it off. My mum looked at me and said, "That's not good." and i looked at her and said, "That's lung disease for you."

I had something really funny to post about but i've completely forgotten. Again i've failed to study adequately but every friend i've spoken to is in the same boat so i don't feel so left out and unmotivated.

It was another nice spring day and i had some windows open. The house smells lovely as the air isn't so dry and stagnant anymore.

I heart spring-time. How exciting would it be that this time next year, I had new lungs!?!?

Sunday, April 6, 2008


I've officially wasted today away by doing nothing. After the vicious assault launched by distance ed last week (remember that 16 paged paper?) my brain has been on a temporary leave of absense and we've all but read 10 pages for exams.

And I don't care.

My brain doesn't care anymore.

It's gorgeous out though: 14*C and the snow is melting so it's nice. I'm off to a potluck at Jenna's tonight and the luxury item that i'm brining will be dinosaur shaped chicken nuggets. No lie. I hope everyone is excited. I hope i'm not the only one who enjoys them also. We'll see.

As you can tell I've had a bit of a lazy week. I feel extremely useless but what else is new. I had rehab Friday and then my regular IV. I have to call the rehab place tomorrow b/c an exam got moved to a day when i have assessments all day so i'll have to get that sorted out. Crap. My nana called today asking about rehab, but she doesn't understand that I havent actually begun it yet, that it's assessments. She keeps asking if I'm listed and wondering if 'someone comes along' if i'll get their lungs. I tell her that I'm not listed and that it doesn't work that way, but she never hears me and just says, "Uh uh!" and there's silence.

I think i have a sinus infection. All I can feel is this 'smell' in my nose...when i breath out i can 'smell''s not an odour come from outside myself but rather, on the inside. Also when I breathe through my mouth i 'smell' it and 'taste' it. It's quite disgusting to be honest. It's so gross that I should probably wear a space helmet to prevent emitting it and giving it to other people. There's nothing grosser than when an infection is so naff that you can actually smell and taste it.

Ew. Fuck.

Whatever. That's all for now. My legs feel tingly when I walk. Joy.

P.S. Grantula is in good spirits; I spoke to him today. He has colon cancer and will have surgery to remove it either Weds or Thurs. I hope they catch it all and I hope it's just an isolated incident. So say a prayer for him that all goes well and they get it all and that it hasn't spread! Thank ya!

Saturday, April 5, 2008

Awake and Mistakes

I made a huge mistake tonight: I watched that movie Awake. You know the one about anasthesia awarness? Yeah - that one. Huuuuuuuuuuge mistake on my part. While I know that this movie doesn't represent reality and the vast majority of surgies, the fact that the patient was going in for a heart transplant and was awake as they cut him open, cracked his sternum, and took out his heart, is a little concerning to me. My biggest reason is the fact that I have nights when I can't sleep - even when I take meds. What would happen if I get my tx and I'm awake for the whole bloody thing? I am going to order them to drug me up. This sucks. I'm terrified now. Oh well. Ugh.

I had some rehab assessments today and then went to the other hosp for my IV. I'm exhausted.

Before I go I am asking for prayers for two people: One for Pepe(Gina) who is in dire state in a hospital in the states (I follow her blog and have spoken to her a couple of times). She is deteriortating but is too sick to get listed for lungs - she needs to get better to be listed. If you could pray that things look up for her, it would be appreciated. She's been fighting this forever; it's just not fair. She deserves a second chance. She deserves so much more than a second chance.

Second, my dear from Grant(Grantula). I havent spoken to him for a couple of days, but knew he's been having some issues with his stomach (he's got CF and it's common). Well I read he has cancer and has to have surgery to remove it. I'm assuming it's in it's early stages which is why it's able to be removed, but if you could say a prayer for him that this is all it is, and that he recovers, not only would he appreciate it, but I would too.

That's all. I hope the world isn't falling apart. It breaks me up to think that people go through shit....and still go through more. I don't get it.

Wednesday, April 2, 2008

What day is it?

What day is it?

Is it Wednesday? I guess it is. I've lost track of time being trapped in the house. I guess i go back for my first assessment at rehab tomorrow. It's an all-day debacle. Woo hoo. It means i have to make my lunc which i'm not thrilled about. Whatever.

Assessment, assessment, assessment. That seems like all i do is get fucking assessments. I mean i can't complain, I'm sure last year i was itching to have them to get them over with, but i feel like i'm always being assessed for the same thing. Oh well. Shut up, I know. I can't remember off the top of my head what assessments I have tomorrow but i think it goes something like this: recreational therapy assessment, occupational therapy assessment, and meeting with a social worker. Who knows though, I could be completely wrong.

Ermmmmmm........well yesterday was terrible. I felt like my regular shit self. It was an outright windstorm. Winds were up to at least 70km/h. As i was walking to the bus stop from my last class, it was blowing so hard I literally thought I was going to suffocate. I felt much like a fish out of water as air zipped by but i wasn't able to inhale it. Not only was i feeling like i was suffocating, the wind was actually pushing me. It was terrible. I've never been so out of breath and had no oxygen to get a hold of, and i've never been pushed by wind to the point that i couldn't stop moving. I wonder if i went into Superwoman mode b/c looking back, I don't know how i made it to the bus stop.

There was some excitment last night. I was up here, when i heard this bizarre giggling sound from my sister coming from the main floor. It gradually got closer to my door. My cat flew up the stairs (my precious Zoey, who i'm beginning to realize needs to go on a hard-core diet) and hid under the ugly fake wicker chairs we have. Zoey's tail was all fat and my dad flew up the stairs after her.

I turned to see my sister half laughing, half freaking out.
I got up and sure enough Zoey had a baby squeaking mouse in her mouth, and she was hitting it with her paw.
"She caught it in the basement, and came up and flew upstairs."

Zoey got up and looked like she was debating whose room to go into: mine, or my sister's. I flew up to shut my door when my dad yelled, "GRAB HER!" He got Zoey and took her to the front door.

I heard a thump. She had dropped the little mouse on it's back. We all stared at it. It's back leg spazzed. My dad opened the front door and my sister grabbed Zoey. He picked the mouse up by the tail and flung it into the garden. It roated - like a ninja - in the air 2 or 3 times. I felt bad for the poor thing. She didn't kill it but now it was outside and it was gonna freeze.

Everything calmed down and 10 minutes later I was back up in my room. I heard rustling again. Then i heard a forlorn "meooooooooooooow". It was the sound of utter saddness. I got up and peered down the staircase, only to find Zoey sitting and staring at the spot where her coveting mouse had dropped.

"Are you sad?" I asked.
"Meowww" she replied (i'm serious - she'll meow if i talk to her).
"Come sit with mummy" and she came upstairs. I was hesitant to let her back into my room though, b/c i didn't want her rodent infested mouth to get all over everything, but she stayed for a while until she returned to her prey's spot.

It was really gross. I hope this is the last of the mice!

That's it for now. i realize this entry sounds more like a short story than a blog. but it's all 100% real.

I'll write tomorrow after my 'assessments'. I must say though, before i go, that I am feeling more confident about getting listed, so i'm happy that i'm not confused about where i stand anymore.