Thursday, November 24, 2011

written when i was just put on the list for a heart

This was written when i had been on the tranplan list 20 days, its amazing the differents im healthy ,happy and i can live normal life now

My heart is in heart failture and i can feel it, my body feel broken its been through so much and it keeps fighting my body is just geting weaker and weaker it knows that somethink is wrong.
The vomiting has started up again, my body is slowly dieing,
It feels like death i slow motion its really scary.
I have now been waitig for 20 days for a heart, im waiting for someone else to die it dosent seem right, you cat plan death.

Wednesday, November 23, 2011

Bugs/flus and a good old rant

I have enough flu like normall, im gonna bitch post here
Iv had so many flu, colds this yearr and they just keep cummin and its summer i still have one,
Im so over this low immum system ball shit stay way from this or that or you will get sick, anit it bad enought i have to deal with all my other medical bull shit and im out of sick leave .

I alway wondered what my life would be like if i wasent born with a bad heart, it would be so different i woulent have been in and out of hospital all the time and feeling sick all the time,maybe i would have put more effect in at school and maybe i would have gone off and studied, when all my friends where of at uni studing i was at home to sick to even work,

Im so greatffull for this heart transplant and that im not sick any more but i  do get days, its like why me !! , why was i the one who had ot wastie 21 years of my life not getting as much out of life as everyone else,  i could live my life the way i wont to not have to worry about my "big book of rules"

Wednesday, September 28, 2011

Cheeck up

So i had my check up yesterday it was the best check up iv had in a while ,  everythink was looking good she even droped my pred down to 5mg and my tac down to 3mg and she has put me on yearly vistas ,never in my whole life has my vista been that far apart , so yearly to Auckland and in between she wonts me to to Hamilton for check  ups so it yearly to  Aucklnd and yearly to Hamilton so it be like 6months check ups spilt between the hospittals .
So im so happpy about that it bring a bit of normal ness to my life not having to go to hospitals as often .

The only down side is my doctor gave me the i shouldent be drinking speech i already knew that but did it any way , i spent 21 years of my life sick hell why not enjoy the life i have in saying that i dont wont to shorten the short life i already have , but i like going out and drinking i have fun and iv never had issuses with it before

Tuesday, September 20, 2011

Two and a half years



It was 2 and a half years on the 14 man time flys, had a dinner with my family to celebrate my new healthy life and that im alive , i love life i have my ups and downs like everyone else but having that transplants given me such a great lease on life

Tuesday, August 16, 2011

Enjoing Life

It snowed yesterday how amazing was that the beautty of life , it was the first time in my life iv ever seen snow fall, it melted once it hit the ground but it was just pretty watching it come down, its the little things in life like snow that makes life amazing.
I still get kicks out of been alive the small things like going to the letter box, and walking to town two and a half years later i still am so amazed at what a differents it made, that i could go from not been able to walk to the letter box and could bearly breath at night to this ......

LIVING , WORKING ENJOYING A NORMAL LIFE ..

This is what life should be about friends, family enjoying the time you have left no matter how long or short that is

Sunday, July 24, 2011

pill drugs and more pills


SO just the 411 from the last post i went back to Auckland ( a month or so ago now) and results come back that i only had mild rejectoin which is not a biggie they just up the drugs a bit and im good as gold and dont have to go back till nov/dec now.

SO im having issuse with my drugs and work a while back i got told that i couldnt take my drugs on the floor which was fine so i started going to the office to take them now they wont me to go talk to my doctor about how often i should be taking my drugs ect long story shot they think im taking too much drug and think im zone out at times, there was a time that i proable was taking to many pain killers but iv cut down so much on them now i have days that i dont even take any more i dont know what the big deal is i just take them when i need them none of this 2 hour/4 hour bull shit
and it was suggest i get a note from my doctor saying how often i should take them.
Funny thing is that this back pain is CAUSED BY MY JOB.

I know everyone thinks im this big pill popper and addicted to pain killers but im not cos theres days i go without taking pain killers and i never take pain killers on my days of so that in its self proves im not addicted to them
They should try live a day in my shoes and see how they like it ..
My doctors always on my back that im not taking enough pills and miss them too much and on the other hand i have my job on my back telling me i take to much i cant win .

Saturday, May 28, 2011

The big R Rejection


So i now back from my "trip from Auckland" if you would call it that
Went back up to Auckland for my biopsy to see if why my echo was different because of rejection had my biopsy but they stuffed it up so i had to have it done again before i had my 2en one done i went and saw the doctor and they told me they where looking for chronic rejection man those few days in till i got my results back was i stressing the only think in my head i could think of was that this could kill me

So findaly got my 2en biopsy done and results come back and it was moderate/server rejection but i didnt care i could deal with that compered to what they where telling me they where looking for, the treatment suxs and the side effects sux even more and the whole not been able to sleep is a pain in the butt, but at least they can get rid of it so that was relieve

So did my IV treatment and took my drugs and finally got to go home and i go back in about a week and will find out for sure if the rejection is gone or not but im pretty sure it has cos i feel 10 times better then before i had my treatment

its amazing what a bit of drugs can do how much i hate drugs , hospital and all the rest if i wasn't for them i wouldn't have a life i would be dead or sick in my bed all day ever day ,
im so great full ever day that i can get out of bed ever day , i can work even if its only part time and even if i do fall sick all the time i have so much more of a life now then i ever have what more in life can you ask for

Friday, May 6, 2011

Mine and Jess old hearts

Mine and Jess's old hearts ....




video

My two year check up ..


SO last week was my two year check up in Auckland , most it went well but my last day they come and told me they wont me to come back in two weeks for a biopsy cos my echo looks different then my last one they didn't really give any details so me been me went and looked at my hospital file and my echo report said i had mild hypokinesis so im guessing thats what they mean when they say its different.

Which according to google hypokinesis means "a part of heart muscle is not contracting well" so that makes me a bit tad worried, my heart is meant to be healthy now, im two years down and they stop doing biopsy after the first year in less theirs any issues if it is something hopefully its just a bit of mild rejection or something like that , that they can get rid of with drugs .

I don't know what my boss is going to say i had two weeks off for Aussie come back to work for a week then had a week of for my two year check up ill go back to work for a week and then i go back to Auckland for 3 days for my biopsy and if its rejection ill have to stay up there for another 3 day for treatment , my jobs been so good to me about my medical stuff so far that i don't know how long they will put up with it.

on top of that i don't know how long i can afford to take all this time off work i still have my bills to pay when i was sick i hated been sick but i never had to worry about if i take time of work wheres my next meal going to come from, i was to sick to work so i got money from the government ever week no questions asked.

Thursday, April 28, 2011

Pill pill and more pills


I have a new understanding for people with back pain ever sine iv worked at spotlight iv started to have really bad issue's with my back , im so tall and im leaning over and cutting things all day at work and now i have really bad issues with it ,

i starting of taking codeine for it and that didn't work so then the doctor but me on tranmadol for it that didn't really work it makes the pain a little less, but not yet have i found a pain killer that the pain goes away all together and they made me feel nausea so she gave me a pill to help me with the nausea catch 22 been i cant stay on that long term who knows why ,so she doesn't mind me been on pain killer long term but not nausea pills?? , any way my doctors given me a whole bunch of new pain killers to try a week on each and see witch one works best so im hopeing one of them works

i know every one thinks im this big pill poper and take to many pills but all i wont is to be pain free i would love it if i didn't have to take pain killers all the time cos that would mean i would be pain free they should walk a day in my shoes and see how they would handle it .
iv been thow so much pain in my life as in body pain that if some one can give me a pill to stop me been in why the hell not ill take it in a heart beat

Have my two year check up for my heart transplant in Auckland next so hopfuly that goes well ..


Monday, April 25, 2011

Barry John my donor head stone


2 years with my heart and Aussie


Pic from Aussie

Aussie was amazing i had a great time i would so love to move there but a thought of fitting my life in an suit case is a bit scary and having to find a job before my money funs out maybe one day.

It was so nice to be able to spent my two year heart birthday with two of the most amazing people two people who where really there for me when i was really sick and i got a really nice email from Barry s (my donors) mum, i cant believe its been two years sine iv had my heart what an amazing journey it has been
Barry s mum spent me some pics of his grave witch was really special.

Wednesday, March 16, 2011

Life is good


Things at the moment are going great for me, im so happy im doing what i always dream off living a normal life working living and not been that "heart" girl that ever one knows me as ,it doesent sound like much of a dream but its about living and enjoying that time given just to be able to get out of bed everyday and feel healthy.

Working going good i feel like im at last managing my hours with out getting sick or tired all the time ,
Health is going great , on the 31 of March i would have been rejection free for a year
On the 14 of April i would have had this amazing gift Barry gave me for two whole years , the best two years of my life sure it may have had its ups and downs but i got there in the end alive and kicking

Off to Aussie in 3 weeks im so exited about that and its just going to be that much more amazing been health ...
I really am just so great full and thank full i am alive .

Don't be afraid of living be afraid of the un-lived life

Song Louie wrote


This is a song Louie wrote about me when i was in hospital on life support after my transplant it makes me cry ever time i read it
LOVE YOU LOUIE

Twenty cords intertwined in as many hours
Lungs breathing and a heart beating on man made power
Whispered worries and what ifs shared in peace
At first sight it wasn’t you who was sedated completely
A body run by a lifeless product to be kept alive
An image etched forever in the deepest corners of my mind

I wanted to hear you breathe but not by machine
I wanted to talk to you but not on second hand speech

Do you know what it sounds like to hear a heart stop?
Do you know what it feels like to feel a pulse drop?
Do you know what it sounds like to hear a heart stop?
Do you know what it feels like to have a heart swapped?

Twenty questions in twenty seconds asked repeatedly
Heart pounding, stories and jokes distracting constantly
Hands producing sweat palm to palm as we pray
They switched you off we weren’t sure if you’d stay
You switched on after being out after your wounds were sealed
You were granted the second chance you’d craved you were healed

I wanted our eyes to lock and for you to recognise me
I wanted you to clasp my fingers I placed in your reach

Do you know what it sounds like to hear a heart stop?
Do you know what it feels like to feel a pulse drop?
Do you know what it sounds like to hear a heart stop?
Do you know what it feels like to have a heart swapped?

Put on your boots and leave your guardian angels at the door
You won’t need them where we’re going you’ve already got what you were fighting for

Do you know what it sounds like to hear a heart stop?
Do you know what it feels like to feel a pulse drop?
Do you know what it sounds like to hear a heart stop?
Do you know what it feels like to have a heart swapped?

Saturday, March 12, 2011

My donor Letter




This is the letter i wrote to my donor family letter is was written about a year ago now so its a bit out dated im no longer studding computers anymore and as meeting them didnt turn out the way i planned it i did give it to them but it wasn't the first letter they got from me as we found each other on the internet first

To Donor Family

I don't think I even know where to start writing this letter.
I have never met you yet you have given me the best gift anyone could ever given me.
You have given me life.
While my gift is my greatest joy its at the expense of your deepest sorrow, I must offer my deepest sympathy for your loss. Your family member must have been a amazing person and I will forever hold them close to my heart and a piece of them will live on with me forever

This heart is my new healthy gem thats brought me from my deepest sickest day to this moment. I' m more alife now then I have ever been and forever I will be grateful for this gift I have been given.
I thank you so much for opening up your heart and giving me the most amazing thing anyone could give me, for giving me back the years that I lost that heart disease stole from me.

I'm 21 years and I am now able to have a life, I can do so much more then I ever dreamt off doing, things I never thought I would ever be able to do you have given me a second chance and for that I will be forever greatful.

Befor my transplant i could bearly walk to the letter box without geting out of breath the other day i walked 8km round the lake more then i have ever walked in my life your given me the chance to enjoy things in life that i never thought i would ever get to do, i now have the chance to go out there and enjoy life and see it all in a different way, i can go out there and explore this beaterful country we have.
I feel like my life is just like everyone elses now "normal" , everything I ever wanted.
I can study like all my friends and get a job and make a living just like the rest of the world and not be afraid of planing for my future as I know I have a future now.

I was born with a heart conditon that runs in my family which caused me to became very ill. I've been in and out of hospital my whole life and on many different pills and as time went on I was getting sicker and sicker till my doctor told me I would die without a heart transplant.
I recived my heart transplant on the 14 of April 2009 the day my life really began.

I am now studing computers and plan to save up so I can go out there and see the world something I could have never have done before my transplant.
I want to make the most out of this new life and amazing gift you have given me.

Thank you so much

heart recipient



Monday, February 7, 2011

so many people dieing..


I never knew what my life would be life as a child , never did i ever dream that i would lose so many people or that i would even have a transplant , that kind of things happened in moves or books it wasn't real life ,

Maree died today i didn't know her real well like i have the others iv lost but i knew her and she was only young just like all my other transplant family have been and she didn't make it and thats really scary watching all those people who have transplant dieing thinking knowing when is my turn going to be ,

In the last 3 months 3 people have died that i knew that had had a transplant, it sure puts a price tage on your life.

I do hope i get my 20 years + from this great heart of mine , im living the life i hoped and dreamed of a healthy life and i hope i get to live it too the end

RIP
Jono 12/04/1982 - 27/09/2009
Jess 04/12/1994 - 17/12/2010
Maree 30/9/1986 - 7/02/2011

Wednesday, February 2, 2011

Poem


When a silver raindrop becomes a tear,
When the good lord touches a world born of fear ,
When all men are fighting and peace is gone
When they all blame each other for the things that go wrong
When the fire that burns us devours our souls
When all of the days have passed by
Our friendship will last an eternity past two friends stuck fast you and I .
When the whispering wind stops riding the trees
When the earth cant be heard for the roaring of the seas,
When a baby's sweet cry is heard no more, when the world collapses from the weight of war,
When the darkness that scares us swallows us whole
When the stars are blown out of the sky,
We'll be together,after forever well always be friends you are I .

Wednesday, January 19, 2011

A journal entry from 1 year before my transplant


I found a journal entry from 1 year before my transplant its so weird reading it and looking at how much has changed and how much healthy and happy i am now
The weird part is its dated the 14 of April 2008 and i had my transplant 14 of April 2009

I'm sick of it all , I feel so tried and worn out, im just over all this heart stuff the mebs the tests and doctors the hospital and all the rest.
I'm sick of fighting iv been fighting this horrible illness my whole life, I could just leave it all behind and give up im all out of energy im out of strength, i wish i didn't have to fight it deal with it day after day.

I just wont to go to sleep and for it to all go away for it all to stop to wake up and for it to just been a bad dream, to live one day normal day to feel what its like not have to fight for life every day every minute ever hour, to feel what its like to live a normal life.

The worst part is i can complain be angry about all of it but theirs nothing i can do about it ,i have to live with this everyday the only thing i can do about this is give up but what use is that.
I didn't ask for none of it not one bit, why was i the one who ended up with this silly illness witch in the end is going to kill me ,theirs ways of making it a bit more far away but in the end theirs just nothing they can do,

My doctor might start heading down the heart transplant road, i don't know what to think im scared shit less

Monday, January 3, 2011

Sick of getting sick



Be for i got my transplant one of the things i so so looking forward to was been able to get a job and been able to hold down a job like "normal" people with out getting sick all the time it was going to be great , i now have a job and i love it but i hate thats im getting side effects from the drugs, op ect that are starting to effect my job.
I should remember that normal people get sick too, but what normal person gets sent on from work because yet again they feel like shit...

Even that im not sick like i use to be,I still have a lot of issues caused by my transplant
Nausea,Vomiting,headaches
Drug keep me alive but they can make me feel like crap too
Nerve damage, which is so pain full ,
low immune system which means my body finds it hard to fight of bugs
and on top of all that iv been getting a sore back wish are so pain full wish i guess i cant realy blame my transplant for that but mum things its cos i was in the coma for so long and had to learn to walk again ect that why im having issues with it..

I hate that one one thing i wont to do is get a job and prove myself and its the one thing i cant do cos i keep getting sick...