My Double Lung Transplant

Saturday, March 27, 2010

Beautiful Creature

This morning at 9:30 am PST, Eva passed away.

She was 25.

March 31st would've been her 26th birthday.

Her second transplant didn't come in time. And now she is gone.

This beautiful creature has crawled out of our world and hopefully into a better one, where pain and breathing are not an issue. My only hope is that she is in a better place where she can watch over her family and her friends, and those she loved so much.

My only hope is that the prayers of those she inspired are heard and felt by her family and friends in their time of grief.

My only hope is that things that this don't continue to happen.

My only hope is that people sign their organ donor cards.

To Eva: you are an inspiration. You will be missed by one and all and your journal will be a source of strength to those going through the same thing. For those - like myself - who have been there, and those who will be there, and those who are there in this very minute.

You may be gone, but you are never forgotten.

Fare thee well, beautiful creature. Your final curtain call has come.

You are missed.

Breathe easy girl, breathe easy.

Love love love.

Thursday, March 25, 2010

Sunday, March 21, 2010

Hear, hear - and things i want in my oldness

Welp, it has been a week since I have posted. What i posted about, I can't exactly remember...oh yeah, blood. Well, we're not gonna talk about that because new blood has not been taken since said blood requisition has failed to show up on my doorstep. Therefore, blood shall remain in my system until further notification by mail.

Enough said. Decision made. Stubbornness in tact.

That, and I'm supposed to give a stool sample which is quite the feat seeing as the iron pills have done their job and sufficiently backed me up. I've taken 8 laxatives over the course of 2 days and no dice.

Enough said. Decision made. Stubborness in tact. There will be no pooing in a tiny cup.


So yeah.

I got my hearing tested the other day. Little known fact that I don't tell people, but that I'm learning is relatively common amongst sickies is that there are many of us out there (not just moi, who felt she was solo (as always) in this realm of side-illnesses) that have lost hearing due to meds (namely long-term IV antibiotic use such as the dreaded tobramycin). This is called otoxic loss. Personally, I have 'sloping severe' sensoneurial hearing loss, meaning that i hear some things within normal range (mainly with my right ear which is better), but then some things i don't hear at all and it slopes down into the 'severe loss' range, meaning that i need a lot of amplification in order to hear things normally. Sensoneurial hearing loss is caused by damage to the hair follicles that lay on your ear drum. It is irriversible. As a result of this, I wear hearing aids (not always, because i'm stubborn and superficial). I've had them for about 10 years now.

In Ontario, as long as you are under 25, the gov't will cover $800 per aid and the rest is covered by insurance. Seeing as I turn 25 in August, my dad suggested to me the other day that i made an appt to get my hearing tested and get new hearing aids before its to late. It's been yearrrrrsssssssssss since i've gotten my hearing tested or new hearing aids so i agreed and made an appt.

It was this past Thurs.

No change. Hearing is still the same and i'm still quite deaf, lol. I mean, i can hear without hearing aids but i don't realize how little i do until i wear my hearing aids like a diligent little child. I am getting new ones though! Going with Unitron again and this time i'm getting the shells (the part that goes behind the ear) in transclucent purple. I figured why not have fun with it? Beige is for old people, and I'm not old yet.

But speaking of oldness, I was having a conversation with my friend Matt about things we want when we're older. Here's a list we compiled:
1) pants will from thereonin be called 'slacks'

2) we already have an leg up on the aging process: he wears glasses ( i call him blind), and i am deaf. I have already had some parts replaced. He will one day need several parts replaced.

3) Rocking chairs. My rocking chair will be electric, and will have the capacity to roll because it will also have wheels. It will be a wheeling rocking chair and all other old people will be jealous. My rocking chair will also vibrate causing copious amounts of fat to jiggle.

4) Stair master. I will have one. What will make it better is if said stair master was attached to a wall of mirrors so i could watch myself glide on my ass on the way up. I will proceed to take my cats on rides with me up the stairs, even if i have no legit reason to be using it at the time. They will like it.

And that's the list so far. I think it's pretty fab.

What else? Yesterday I cut 8 inches off my hair and coloured it back to blonde. I am happy with it. I have a pic but i look terrible in it, so i must arrange a photoshoot with myself in the near future and post a before and after.

That's it. Back to my stupid paper i go.

Sunday, March 14, 2010

Bad Blood

So i got a call from my co-ordinator on Tuesday.

My red blood cell count is low.

Very low.

So in celebration a requisition to have my blood re-taken is being sent and will promptly arrive in my mailbox at some point this week. To add to the joy of this is another requisition to give a stool sample at the same time. Double yay.

Not only is my red blood cell count low and thus making me anaemic, my white blood cell count is also low (which sucks because i just got my infusion on the 5th and it shouldn't be), so in celebration of that, my Imurran (one of my anti-rejection meds) has gone from 75mg to 50mg once a day. I am to be on 50mg of Imurran for one week upon when I am to get my blood re-taken to see if my white blood cell comes up.

And then! My cyclo levels were high so instead of taking cyclosporin 150mg in the AM and 175 in the PM, i am taking 150mg of cyclo in the AM and PM now to see if that helps.

Basically, I am a bloody mess, and I can feel it. I am soooooooo tired but i'm wondering if it's also from my body adjusting to working full time. I spoke to my one manager about getting my shifts changed from 3-11 to 3-9 in a few weeks so that should hopefully help!

I have also re-started my iron pills which i stopped taking eons ago. Also, instead of eating at bizarre hours I bought a bunch of Lean Cuisines and Blue Menu's for work so hopefully that should help make me feel better. I hope i adjust to my job sooner rather than later though because i don't enjoy having lack of energy.

Other than that, I am contemplating getting my masters at some point in social work.

Ca va?

Ca va.

Friday, March 12, 2010


Welp, I'm a working girl now. My perminant shift seems to be 3-11 which has it's pros and cons.

- It really is a shitty shift to get stuck on
- Busy hours are from 5- 7:30ish and I don't yet know how to do everything yet
- I make a lot of smoothies and thus have dry hands
- I feel like i work when the rest of the world is relaxing

- I get the day to myself
- I have learned that I can still 'do stuff' after work, such as go out for drinks
- money, duh
- It's not like i really do anything from 3-11 anyways
- I get to make all my appts and not book time off

So yea, there are pros and cons to everything. I am finding it hard to adjust to working full time after not working at all for 3 years, but like everything, it takes time to fall into a routine. I have to stop looking at things that I don't like about the job and focus on what I do. I can't psych myself out of it and find reasons to quit to look for something else. As with any job, there will be things that you don't necessarily like about it so why bail? I looked long and hard for this job and I know that in time things will get easier.

I need to be positive and that's what I will do!

I'm having trouble remembering how to do all the paper work (which I know will come in time), and I find that i find myself making a lot of smoothies to avoid learning how to do so. It also keeps me from answering the phones for people who call in asking for shit and for answers that i don't have. The hours from 7:30-11 are the best because that is when people decide to fuck off and not bother you with inquiries about gym membership cancellations, or bringing in void cheques. But throughout it all and all the crap-talking that i hear at work, i never actually have moments when i think, 'i hate my job; i want my shift to be over' and i don't always look at the clock. I find that i appreciate the busy-ness of it as it passes the time quickly. And i was right: since working i've had no thoughts of 'i want to die'. It just takes time to get used to a new routine but i know in a few weeks it will seem normal. I must have patience!

The good thing about working at a gym is that i can wear black sweatpants (like LuLu Lemons). The only downside is that my pants lack pockets and i thus have to keep my staff key safely ensconsed in my bossom. The other day whilst gossiping about fellow employees in the bathroom with the custodian i took a deep breath in and the key fell out of my shirt and onto the floor. And yesterday someone asked to borrow the key because they forgot theirs and i had to reach into my shirt and retrieve it.

Oh well. I just never seem to learn.

I think i am going to follow what a fellow employee said: "I love my job". For the most part, it is pretty easy, and there isn't really anything i don't like about it except for all the trash talking about the company, but w/e!!!!!!!!!!!

That's enough for today!

Saturday, March 6, 2010

At the Drag Show

From last night!

Creeping - as only I can do

Thursday, March 4, 2010

E-E-E-E-XTASY!!!!!!!!!!!!!!!!! (round 2)

(Moi et Krystal @ The Drag Show 2009)

Tomorrow will mark round/year 2 of me and the girlies (sans-Jenna-who-is-up-in-the-Yukon-deeply-encased-in-snow-with-bears-and-scrapbooks) attendance at The Drag Show.
For those wondering what it's a drag show...people dress as the opposite sex and put on a fab show and if memory serves me correctly, I had an effing blast year! I cannot wait for tomorrow and am gonna take TONS of pics and will post some here. There was lots of laughter last year and tomorrow promises to be no difference. The only difference is that a) i'm not dying; b) there will be no coughing; c) i will literally be flying by the seat of my pants! d) there will be no epic performance by Krystal dressed as a man and selling 'ectasy' to Jessica-the-Whore with a drawn on ginger-stache and; e) total lack of Jenna.
This year is different as this is how tomorrow will be for me from the get-go:
1) Go for regular IV in the am.
2) Fly home and work from 3-8pm
3) Fly home at 8, feed pets, pee dog, get dressed and make-uped, fly to campus to attend drag show, which begins at 8
So yeah! This past week has been that of a normal persons! Who woulda thought?! I was right in my assumption that working and occupying my mind would take away from thoughts of wanting to die b/c i can't cope with life.
Is that stupid and selfish? It sounds like a giant oxymoron too. But i'm learning a lot about myself through working. I'm enjoying my job greatly to be honest. I've worked 10-6 Tues and Weds, 12-8 tonight, and 3-8 tomorrow. Next week is 3-11 all week. Not so bad, at least i get the day to just veg.
I was told by a supervisor that i'm doing really well for only being there 3 days, which makes me feel really happy. I hope this feeling lasts!! Even though I've been there 3 days I feel like i should already know everything, which isn't possible and i have to keep reminding myself of that fact. It's like life: i've spend 3 years dying and now that i'm not, i can't expect to 'know' how to life after 7 months. It takes time. But at least i'm motivated, right?
Well i think that's all! I will try to post some pics tomorrow or Sat! Hope you're all well!:)