My Double Lung Transplant

Thursday, September 30, 2010

What are you?

Have you ever wondered what you are?

What your purpose is?

You know you are not insignificant, right? I hope so, because everyone has a purpose on this earth, whether they feel like they do or not. Otherwise, why would we be here?

I was wondering this exact sentiment the other day when I pulled up to one of my dog-clients house. What is my purpose? I asked myself. What AM I?

And it came to me as quickly as a thought: I am a healer. I am meant to be here on this earth to heal people. Whether it be with words, through touch, or food, whether it be people, especially the sick, or animals, I am meant to heal them. I am meant to mother them.

Not in the biologicial sense. I will never have kids of my own, and that's ok, but that doesn't mean that I can't be a mother to other things, like animals, and sick people, who can't get that material healing from their own, or if they need additional love through words and such, I can be the one to give it to them - to help them heal, and deal with whatever ails them.

Does that make sense? Maybe I am psychotic, I don't know. Maybe I think too much. But it makes me feel better to realize what my purpose on this earth is. Especially long term. I can't see myself sitting in an office for 30+ years. I like to move around too much, have small adventures. I like to tell my story and narrarate along the way.

I will not be pointless. I will be significant. I will make an impact.

That's my purpose.

Monday, September 27, 2010

Do you ever wonder...

...how we keep track of all our meds? I'm trying to explain to my friend Jess how I take my stomach meds and her only response was "Jeeze". It seems like a lot, and I remember when I started my meds immediately after transplant, my fear was that I would never get it right.

So lets take a look:

I take 12 pills for my stomach a day.
2 colace twice a day
2 domperidone four times a day, half an hour before I eat

I take 175mg of Cyclosporin in the AM
and 150mg of Cyclosporin in the PM

I take 75mg of Imurran once a day. That means I take one pill (looks like an 8) and cut the other pill in half.

I take 7 mg of prednisone every other day. On the days in between I take 5. On the days I take 7, I have to cut one of the 5mg pills in half. It's recommended to take pred with milk. But i take everything with tea.

I take 2 magnesium pills twice a day - they should technically be taken in the middle of the day, but i just take them morning and night. They can't be mixed with a lot of stuff.

Calcium. I take 1 calcium pill twice a day, and if you mix it with your iron pills neither one will work. Iron must be taken separate.

Iron. I can only take it every few days because it constipates me badly. Iron can't be taken with anything acidic, and you can't take it if you're on anything for hearburn. It can't be taken with milk or calcium or food because it will lessen the effects of it. However, if you take it on an empty stomach, it constipates you. So either way, it's lose all around.

Then there's my injections. I need at least 5 a week. I can do them whenever I want, wherever I want, however I want. There aren't a lot of rules for it, thankfully.

Then there's the heartburn pill, that i take for the heartburn I don't have. It's to prevent 'silent' heartburn, which can be caused due to my transplant when my stomach got so carelessly knocked around for 'being in the way'.

I take Septra Mon, Weds, Friday at night. There's nothing fancy about it, but if memory serves me, it's supposed to be taken with a 'full glass of water' and not with milk.

Another nightly med is vitamin D. Nothing fancy about it either.

Then there are the monthly bloods that need to be done now, which I do on the same day as my monthly PFTs and port flush. I am trying to also figure out ordering my Vivaglobin to be picked up on the same day so that I don't need to take an extra trip over to Kitchener, but that bright idea failed me because I'm going tomorrow and won't run out of stuff till next week. Oh well.

Then there's the fun aspect of re-ordering prescriptions and med products, which I won't get into because it's frustrating and upsetting and makes me want to jump through the wall. I will have the pleasure of ordering meds, vivaglobin, and needles, syringes, gauze, alcohol swabs and all that fun stuff later on today or tomorrow. We'll see how scary it ends up being. thanks to my discovery of a hidden stash in my closet, i won't need as many. Hurray!

So, have I confused you yet?!

Friday, September 24, 2010

Not Invinsible

By now I'm used to feeling so good that I generally beleive that I can do and concquer anything. I beleive that I can function on just 7 hours of sleep and go, go, go from the moment I wake up till the moment I lay down.

Well fuck. Today I can't.

Today it hit me like a brick wall, and as a result I feel like goo. I have 0 energy, and it doesn't matter how many energy things I consume, they don't help. I have used up all my Spoons today (google "The Spoon Theory" if you don't know what I'm talking about), and thank goodness my next dog to walk isn't until 8:30pm.

I missed my injection yesterday so as a result i will have to do 2 today. i did one around 10ish and will do the next whenever i stop being so damn lazy. i wonder if that has anything to do with it? who knows.

Thankfully all the dogs I've had to walk today havent been for long. Lemiux was 30 minutes, then Weegee was 30 minutes, although we spent 15 of it laying in a field in the sunshine as she rolled in the fall leaves and I rubbed her belly until she fell asleep (my jobs so tough sometimes); then Sadie who was 15 minutes, who gave me a mouthful when I showed up. I felt so useless that I got a big coke from McDonalds and it didn't help. So i came home and did what any sorry, useless ass would do: eat. And not what I should eat. I ate chips and dip, which will only succeed in making me feel worse.

I think tomorrow I will begin a system cleanse. Just have soup broth and tea and see if that helps. In all honesty I've been eating more chips than i should lately (and cookies) and I wouldn't be suprised if that's another cause for my system feeling like it's going into utter failure.

As shitty as I feel though, it's a nice reminder that i'm not invinsible. It reminds me to slow down, and eat properly, and get rest so I can function.

Until then, I will continue to eat crappily for the rest of the day, and hopefully get some school work done. Tomorrow, let the cleanse begin!

Wednesday, September 22, 2010

Adventures in Vivaglobin

Let the fun begin...!




















Mmmm

It's really rediculous how great a fabulous cup of tea can make you feel. Shitty tea makes me want to knock children over; fabulous tea makes me want to sing songs and jump in puddles and hold ppl's hands and sing kumbya.

But i won't.

Instead, I will remain ass firmly planted on the couch, watching Build a New Life in the Country on BBC Canada. Drinking my tea on this perfect fall day: wet, mizzley, humid day.

I've walked 4 dogs today, and see the 2 baby French bulldogs at 8:30. So far, totally loving the job and i have a feeling i will continue to do so. I love waking up early and seeing all the little creatures, because unlike humans, dogs aren't bastards in the morning. They are smiley and excitable and overall just love to see you. And i love seeing them.

Yesterday I bought a Northface tri-climate jacket. That means it's good for lots of weather, namely rain, downpours, and winter. I didn't want to cut corners on a jacket since I will be out in all types of weather, but that doesn't mean that i didn't silently give spontaneous birth when i saw the price of $305. Now all I need will be snow pants to stay warm in when the weather turns to utter crap and i'll be good! Weeeeeeeee!!!!!

On the health front, things are good. Sadly, the infusion stuff is getting low and i'll have to order stuff in soon. Ugh. i hate ordering stuff, because i hate talking on the phone. but what can you do, eh? I promise i will post pics soon of the stuff. I'm just lazy.

I think that's it for now.

Friday, September 17, 2010

SURPISE!!!!!!!!!!!!!

Guess who found a hidden stash of old (sealed but crumpled) packages of srynges and needle sharps buried beneath the medical rubble of their closest?

ME!!!!!!!!!!

And why am I so excited about this? BECAUSE IT MEANS I CAN DELAY THE SCARY PROCESS OF ORDERING MORE MEDICAL SUPPLIES EVEN LONGER!

DOUBLE YAY!

Wednesday, September 15, 2010

A Series of Unfortunate Events

Not suprisingly, the most upsetting part of my day had to do with the fact that Walmart suffered from the complete inability to supply me with my favourite type of chip. Actually, two places are at fault: The Wandering Scot, for telling me that Walmart carried a full bag of cheese and onion chips, and Walmart, for just existing.

I drove all the way from the south end (where I live) to the north-west end to Walmart-ville in search of my muchly wanted cheese and onion chips. Being that it's Wednesday and thus finale night (Americas Got Talent (funny, seeing as NONE of the judges are American), and Big Brother), chips were in high demand. So i get to Walmart, find a spot, stomp into the place, ignore the greeter, and immediately send my sister the following text:

"I'm in Walmart. Where the fuck is the chip aisle?"

Seeing as I never venture into this place, the last time i was there the grocery section was in the middle. Well i searched, and it apparently had been uprooted and moved. To the other side of the store. So i get there, and examine the massive display of chips at my disposal, and not a cheese and onion chip to be found.

Not a one.

I spent 45 minutes searching.

So i figured why not try Zehrs. Nope, they didn't have them. So i decided on plain baked chips and my favourite type of dip: Gay Lea French Onion.

Well you'd think i'd be able to find the fucking thing.

NOOOOOOOOOOO.

ABSOLUTELY NOT A FRENCH ONION DIP TO BE FOUND.

But i stood there. And i paced back and forth. And i huffed and I puffed and I knocked over every one in their food-stained favourite t-shirt and their children. And damned if i'd drive to MY end of the city, to MY Zehrs, where i KNOW they have this dip! Because that would defeat the whole purpose of driving over here in the first place. *scowl*

But it payed off. Because i found it, and stomped angrily out of the store. And now i'm home, and it's 7:33pm and i have to wait exactly 27 minutes until 8pm rolls around so i can stuff my face to the beat of reality TV.

Ok, that's done.

Injection learning day went well! My nurse was awesome and i'll start the injections tomorrow, b/c i need 5 a week, and got 3 on Monday. It's not hard at all. The hardest part is ordering supplies which I will save until the last minute when I run out of things, and will most likely run out of needles and thus miss a whole week of injections. Typical, but w/e. I'll get pics and post them.

My stomach was sore the next day, and thanks to a royal canine punch in the gut from a dog who's kind've an asshole, all is well now. It was a feeling that felt A LOT like how i felt in the weeks post-tx. Honestly, it feels like i did 1000 crunches and had the post-work out soreness, but nope, i just happened to be the fortunate recipient of multiple injections in under 4 hours. Woo. Go me.

I think that's it. Face-stuffing to commense in 20 minutes.

And to JEN - my mum's hair dresser and avid reader of this blog - you rock! Thanks for being such a fan! :)

Night kittens.

Saturday, September 11, 2010

Look...!

...at this creature



I want it.

I must have it.

How can you resist that face? I want to squish it, and squeeze it, and love it forever.

In case you're wondering, that's a Newfoundland Retriever, and I've been thinking about getting one for a while. Of course, I have to save up for it, but I'm willing to do that. Hell, I'm saving up for my trip so why not save up for my own dog as well, right? So weeeeee!!!!!!!!

I had a meeting with a bone doctor the other day. Things are fine and i'm on the proper meds for it, and I inquired about my sternum pain and she said it's to be expected. She called it "rheumatism" *aka, layman's term* for arthritis. She was a nice doc and tested everything else and said that i was essentially fine.

What else? Life has been normal. Waking up at 6:30am almost every day to walk dogs. I love it. It's great.

And that's about it.

Friday, September 10, 2010

WOOOOOOOOOO!

Thanks Merv!!!!!!!!!!!!! I can't thank you for all you've done for me!! You truely are a wonderful friend:)

Go here:


http://www.mervsheppard.blogspot.com/

And then freak out!:)


(if the link doesn't work, go to my tx links bar and it's called "Merv's Blog" (who knew)?

Tuesday, September 7, 2010

How cool is this!?!

My phone has been ringing every hour on the hour since 3:24pm. I couldn't answer the first time b/c I was driving (it's illegal to be on the phone and drive in Ontario) the rest of the times I just havent been around my phone when it's gone off, but have seen some annoying person calling me with no traceable number.

Finally, it hit me: my coordinator! If they call you and you don't answer, it is programmed to call you every hour on the hour until you listen to the message. So finally, at 6 something, I called the number and low and behond, a message was waiting.

So i start listening and my co-ordinator says, " I heard actually through the people at Trillium..." to which I rolled my eyes and thought, "Fuck. What've they heard now?!"

But it was good! Good, good GOOD i tells ya! More than good! MIRACULOUS!!!! Ok *sits down* The people at Trillium Gift of Life were so moved by my letter to my donor family that they were calling to ask if they could use it for medical students while they train - learning about organ donation. They wanted to know if they could use excerpts of it for the students to read so they could get a better understanding of just how impacting organ donation is. She said that they found it exceptionally well written, moving, and heartfelt. She hoped that it wouldn't damage the relationship I have begun to build with my donor family. I called back ASAP and said to go right on ahead, that they have my permission to use whatever they would life - half of it, some of it, all of it.

AHHHHHHHHHHHHHHHHH!!!!!!!!!!!! Then i made my mum listen to it. And then my dad. And then I will listen to it again and make myself realize that i am AWESOME and this is EXACTLY what i want to be doing with me life!

AHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!

Ok, screaming aside, things are grand! Dog walking is busy busy busy, and I am gone from 8:30-3pm pretty much, zooming all over the place and walking dogs. Life really couldn't be more awesome right now. No stupid people to deal with, no stupid stuff, no stupid anything. Just doing a job where i can do what i want, wear sweatpants if i want, a dress if i want, sandles if i want, shoes if i want, eat when i want, listen to music if i want, be silent if i want, avoid contact with people if i want, squeeze animals all i want, kick children in the park and run if i want, knock children over it i want.

It's beautiful. *squeak out tear at happy thought of knocking children over, whilst in sweatpants, with iPod in*

It's been a wicked day! WEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!

It's so awesome to finally have a job that i don't flat out hate, that i feel inadequate at and where people are judging me. Animals don't judge, they just want love my friends. And that's what i've got : love love love!

Friday, September 3, 2010

"We're on shit that could kill a horse"

Upon investigation of possible side effects of antirejection meds, Cassie and I accumulated this list:

Cellcept:

- rare untreatable brain disease
- can give you HIV
- lukemia
- lymphoma
- uable to control muscles

Prograf:
- can make you go into a coma
- seizures
- decreased pee
- weight gain
- back pain
- rash
- itchy
- hearburn
- vomitting

Cyclosporin:

- facial swelling
- hair growth
- high blood pressure
- kidney and liver probs
- headaches
- high cholesterol
- loss of appetite
- vomitting
- acne or oily skin
- the shakes
- joint pains and cramps
- weakness and anxiety
- tingling in face and extremities
- night sweats
- hearing loss

Prednisone:

- vision problems
- eye pain, redness or tearing
- sore throat
- fever, chills, cough, or other signs of infection
- seizures
- depression
- confusion
- muscle twitching or tightening
- shaking of the hands that you cannot control
- numbness, burning, or tingling in the face, arms, legs, feet, or hands
- upset stomach
- vomiting
- lightheadedness
- irregular heartbeat

...and the very best, lets all yell it out together!:

LOSS OF CONTACT WITH REALITY


Fucken eh! That's all I have to say about that! So my tx friends, when you're feeling down and out, or ready to smack a bitch, or get on board your spaceship, take a peek at this special little list and find some comfort in the fact that it's not really you that's making you feel so effed, it's your medication yo.

Upon other things, things are grand! My new job is amazing - seriously busy, with a confusing schedule, and lots of zooming around and the like, but i love it. Thanks to my affinity for hating people (ok that's a lie: they're assholes), dog walking is pretty rad. The time is good too, which is fab! Some early mornings which I don't mind, some live out of the city, some need to be seen 2 to 3 times a day, most of them walked for 30 minutes, some are only walked certain days of the week, all must be seen at or around the same time each day, it's good. And i have to squeeze in appts in the mean time. And squeeze in seeing Finn.

And learn to give myself injections. And keep a stupid log *shakes fist in anger*

But other than that, i wouldn't have it any other way! Oh, and school starts next week, and I'm going to be joining a walking group with a fellow tx friend.

Weeeeeeeee!!!!!!

Ok, off to fill my pill box.