Thursday, April 14, 2011

Day 17 6/04/2011

SHORT SHORT SHORT POST

Hey guys after that long story just thought I would keep it really short (for this post).
I just wanted to say that I am not really a great fan of showing myself to the world. I hate when people see me as that sick person and I hate to focus on just that in my life alone. But it was time I be strong and share this small piece of myself with the big world. I hope that you have been enjoying it so far.



Day 16 5/04/2011

PART 4........

So the last part of the story is going to be very short! After I woke in intensive care I was only in there for about 24 more hours. At 10am the morning that morning I had the respirator taken out and by that night I was aloud to eat! The only thing I wanted was a lemonade and some apple juice! That first day was filled with tests and pain! And by that night I was watching Dawsons Creek with my sister! Or more she was watching it, and I was yelling at my mum to wipe the other side of my face!

The next day I was taken to the ward where, everything pretty much happened from there! It was all very fast! I learnt to walk, eat, wee and everything else. You have to recover pretty fast after the operation because if you don't then it becomes harder for your body to heal! I stayed on Pat Clancy ward for 3 weeks and was in a isolation room for most of that time, there was a play room where I could go, where I had school lessons with a private tutor.
After 2 weeks on the ward the doctors noticed that my blood sugars were not going down and it was determined that I had diabetes. They first thought that it would be a temporary thing as I was on special meds that made me have high blood sugars. But it has been 10 years now and I'm still on insulin.
*I was predisposed to get diabetes as I have CF and it occurs very often in teens with CF. It was brought on earlier because of the anti-rejection meds I have to take.
Getting the diabetes was probably the worst thing that happened, it took me along time to adjust to having needles and controlling what I eat! (Don't tell anyone this but I am afraid of needles!)
The second hardest thing about the recovery was the isolation, after I was released from the ward I still had to live at the hospital for 3 months and I couldn't even see my little brother until 6 weeks after the transplant because he had cold sores. My mum would stay with me during the week and then my dad would come down every weekend.
*Should explain the transplant was done in Sydney and I had to live at the hospital in special accommodation on hospital grounds. My mum and I lived in Canberra and my dad flew in from the Gold Coast every weekend.

A transplant is a very long journey for everyone one involved. I got to know the hospital staff like family and my own family had to make very big sacrifice for me. After the transplant and being away for so long it becomes hard to adjust to regular life, almost every part of my life changed after that operation.

I want to dedicate this page to the amazing family who deiced to donate their loved ones organs. Thank you.

Thursday, April 7, 2011

Day 15 4/04/2011

PART 3!

On April the 11th 2001, my life started. Yes you could say that my life started from when I was born. But when you send the last 2+ years slowly getting sicker you start to forget the time before when life was different. Before I had my transplant I was dying so when I say my life started I mean that I could start living again, the wait which is so hard. I could and probably will never understand what it was like for my family.

So on April the 11th 2001, I went to see one of my liver doctors in the afternoon after school. We were told that he had an important call about a transplant and that we had to wait in his office. Me and my mum waited in there as I was only 12 at the time. At the time we just assumed that the call was about a liver for an adult as he mostly worked with adult liver transplants. When he came into the office we had the normal check up and he said see you in 3 months. But as we were making a new appointment one of the other doctors asked me and mum to step back into the doctors office. Mum then turned to me and said he is going to get you that liver, and I started freaking out saying I didn't want it anymore.
He came back in and said there is a 50% chance there will be a liver for you tonight don't go out! The first thing my mum said was "what do you mean don't go out I have bridge on tonight?"

We left the doctors office and then went to my brothers school interviews, where he told me that he didn't want me to have the transplant now because then he couldn't go to his softball comp in VIC! Later that night as we were driving home from the interviews we got a call on the special mobile phone they give you. It was the coordinated for the transplant program and he asked my mum to pull over to the side of the road! There he told my mum that they had a live for me and that I was to go home and get ready! When we got home my aunties came over and there was a whole lot of crying! My dad, step mum and sister all lived in QLD so I had to ring them and say goodbye. Then I had to have my last meal which was honey toast because that was all we had left! Let me tell you if you are ever put on the transplant list always have something good to eat in the house because honey toast is crap when it's you last meal for days!

We were then flown to Sydney by air ambulance and then transported to Westmead Children's Hospital. We got there at about 10:30pm and I didn't go down to sugary till 4am! They had to do extensive tests again to match the liver. The tests finished around 2am and mum wanted me to get some sleep but I was so afraid to sleep because I thought I would never wake up again! They took me down to the theater waiting area, then in to the theater where I one of the last things I said to my mum was I don't want to die! Looking back I am glad that I had my transplant when I was so young because my fear of death was not as great as it is now!

The transplant took 14hours, and in that time my whole family arrived! Waking up the first thing I remember was looking at the monitors and knowing that I was alive! That was about 4am the following day. Shortly after my dad came into intensive care and the first thing he said to me was "why are you up so early Blissy?" (nickname) Very soon after that my mum came along at that was the moment that I new I was going to be alright with both my parents standing beside me!

Part 4 next blog!







Wednesday, April 6, 2011

Day 14 3/03/2011

BEEN OFFLINE!

Hey guys sorry that I haven't been posting for awhile! I have just moved house, so if any of you out there have ever moved house you will know what I am taking about! It's a bitch! On Sunday alone I had to work, come home move my stuff and then clean the old house for inspection! And right now the new house is still a mess! Oh and also my Internet has been playing up!

So day 14! YAY! I made it 2 weeks which is amazing for me let me tell you! As I said in my last post I find it really hard to take everything! And it gets to the point where if I don't do it, it then becomes a punishment thing and I keep going downwards! Then it's 3 months later and I haven't taken anything and I feel like shit and hate myself! It's a fucking cycles that I hate! but I don't know if I have enough strength in my to keep doing this for the rest of my life!
I just want a day off, and even if I don't take my meds all day I feel so guiltily about not taking them that I never get a break!

But think of it this way..... You have the most exhausting day (eg. moving house) then you have to save that last bit of energy to take you meds and put more effort into a life that sucks!
Sorry I feel like this blog has just become a place where I can vent! Next blog I promise more of the transplant story! I off to do a nasal wash out!

Saturday, April 2, 2011

Day 13 2/03/2011

I SUCK!!!!!!!!!!!!

Today was shit! I was shit and I hate doing this so much! I keep beating myself up if I don't do everything right and today was the worst! I was running so late that I forgot my creon when I went to work for the full day, which I have to have everytime I eat! And then I felt so bad about that I totally went out and ate as much sugar as I could get my hands on! And didn't do my blood sugar because I didn't want to look at the truth of what I had done! And because I sucked at this I totally did something wrong a work! FUCKING KARMA!!!!!!

This is my biggest problem sticking my head in the sand! I don't want to know or face the truth because it will hurt and being me back to this SHIT LIFE THAT I LIVE! And if I find out the truth then those people around me will and I will hurt them! I'm the protector I protect people from the truth because I don't want to hurt them!!!!!

I hate this disease and I am sick of thinking about death all the time! GET OUT OF MY HEAD!!!
I can't do this!