Tuesday, 4 August 2015

Guess who's back!?

I'm back bitches!! 
(Warning for people reading, I talk about girly bits, toilet problems and nakedness!) 

For weirdos please don't use this as porn ha 

Sorry haha So this blog I know for a fact will prob make no sense! Il do my best and I'm just gna go by what's happened in my little world! 

Right off I went 2pm to get this stent out had a selfie with mum and lee and a few giggles before hand, was told to have a good wipe down my groin area, they gave me wipes that had a picture of the vagina area so I assumed safe to use on that area obviously! 
Me being me gave myself a good old wipe... Then I sat there with a burning fanny (as I call it!)  Mum and lee found  this highly amusing pre op and I ended up having to wet and to cool down with blue paper, really cold and hold inbetween my legs! I was on fire! So for my fellow clean freaks do not trust pictures for fanny wipes! Ha! 

I also found the sexy giant granny paper panties funny...one size fits all! 
 So off we went 

My surgeon was the nicest guy and he explained all the bits, typically I wanted to ask for a video or picture after and he said he would most likely be able to do this for me! 
Things are a bit blury. 

As you are aware mum has filled in the blanks! She's a good little blogger and hope she kept you all informed! 

I remember choking, and seeing orange stuff but it felt like I was choking forever!
This is all very hard to remember now! 
She gave me paper and pen. And put the pen in my left hand, I was struggling so hard to write after gomey writing a few things, I wanted lee and mum and I said have I had a transplant? and she said no. And then I realised I could put the pen in my right hand haha

She changed the finger probe over and she said oh your right handed haha and I became the best writer ever!! 

A few mins later or so mum and lee came in and I was like what the fucks happened!?? They looked relieved to see me and I was like what's happened where am I? And then began to argue that I was at frimley and how did I get to Harefield bla bla 
Then remebered why I got ambulance to Harefield night before! 
I was moaning how much my nose hurt from the enormous ng tube and the giant oxygen tubing, I'm use to my baby ones! 

And I was naked and had a cathetier in to wee...what had happened I couldn't explain it and wasn't understanding it and they told me how serious it was and lee and mum said how loved I am and how amazing my just giving page was doing!

I couldn't take it all in and was getting very frustrated! Then I found out the day! It was Friday! Wtf I'd missed so many days. I literally couldn't understand. 
Everyone was down, family wise and  then obvs I wanted to see everyone, I was in ICU and nothing made sense! 
I saw some lovely Drs and one called Alex tried to explain to me what had happened and why I cannot leave Harefield now. 

This is so differcult to remember and feels like weeks ago now. Everyone was telling me, I had been ventilated and they were close to having to put a Trackie in my throat. 
Was all too much. Mum told me about people visiting, I felt so bad I had no idea. And got very tearful when I found out about my little sister had been very upset! I Started crying! 

Then I was back to moaning. Got the ng tube out 
Grumpy bossy George! 

I got all the questions and just wanted to talk a lot but was told very quickly how much I needed to take it easy. 
I told them you don't know me! I'm fine bla bla. Inbetween family coming in, I had surgeons and consultants walking past telling me you ok and lovely people smiling and asking how I am and I felt so rude. 
One man said you truely are a lucky girl to be here. He was so lovely but seriously, I felt like they had been talking about someone else, I'm just me, and if all they said was true course I'm still here! Giving up has never been an option! 

Then it hit me I was in a very scary environment. People around me weren't awake, guy opposite was and before I left I found out he had actually just had a double lung transplant! :) 

Then the problems...so I was very aware of a line in my groin, the fact that I hadn't actually had a poo for a week as I'd not gone at all in ICU so I'm told! 
So I had to bite the bullet and have some thing pushed up my bum to make me go! 

Didn't give me much time or warning but did feel slightly better after! Although being naked and using a commode or just a bowl to do ya bits in, made me feel so not what I'm use too! I wasn't even keen on giving urine samples. so over all that now! 
 
I slept rough that night cause it's a strange place and not a good one to be awake for! Family's broken hearted! And people didn't always come out the good side! I was too aware to be there! 

I had the best nurse and we had a little giggle cannot believe she is my parents neighbour! 
And then the next day she was looking after me again and they planned to move me to rowan ward where I am now. HDU but coming out of ICU was amazing, so bright! And there were trees ha and the room I'm in I love it's at entrance where u drive into hospital, and I love people watching so it was great. 
Plus camp jewsbury/Somerville/Petrie/delevingne and anglins were outside and it was amazing to see all my family there! Even though I couldn't see everyone as I became very tired, it felt like I was with them! 
I'm missing so much out. It's hard but I want to get important bits. 
Saturday night was hard, had to have X-ray on tummy and chest! But was nice little tour of hospital!
Sunday full of more family and visitors and being told who had visited when I was out of it! 
Sunday night I got my first call! So strange! I was so calm. After hearing what had gone on. I think I've just Been a bit numb and in shock! 
I was fast asleep, lee had only left about 11.30pm and my transplant co ordinator, woke me up very gently around 1am 
and said hey George do you remember me! 
We have some lungs! I was still waking up! She explained it all and it was going to be a full size to fit me! From non heart beating donor! 
I rung lee as he takes a while to wake up and was furthest and said get here asap! Then mum! 
I couldn't  believe how relaxed my mum was! And I was so exhausted I just wanted to take it easy! 
Before they both arrived, I had met the surgeon! I think he was German! We went thru all the legal bits and then signed away. 
He asked if there was anything I wanted to ask and I said can you take a picture of my lungs, he said he would try and remember and we had a little giggle. I said ok il tell everyone! And then I said you promise you won't give up on me! 
I won't ever give up so whatever happens and he said I know you cf lot, your little fighters! I said I know but you don't give up on me and I won't on you deal!
Signed my life away! 
Then lee and mum arrived. 
I'm so use to being naked now! My poor mum has wiped my own bum and lee and them have bed bathed me and seen me naked so many times now it's the norm! 
So they sat there while the two lovely African ladies washed and de haired me.... Yeah another thing no1 shaved me in ICU! Thanks! 
Then I got a full on Hollywood by one nurse hahaha!! Badly shaven pits but I was struggling so much to function I wanted to save my energy! 

I have worked it that I may buy some nipple Tassals as that seems to be the only non acceptable type of boob display! Haha

Anyways long story short it wasn't a go ahead! But very close! However I was so happy to have gone thru the process and knowing some poor family still took the strength to agree to organ donation! The lungs weren't suitable but other parts were donated and I know how amazing that would have changed the lives of people this week! 
Donors are the true heros and inspirational people!! 
My coordinator was gutted for me, and was surprised how well I took it. But I know my time will come and it just made me happy to know in the darkness hours of pain people are still doing the best most selfless act!! 

Onto more real life situations. Feels like forever since Friday! But I'm really not good. I'm so mentally strong but my body is under a lot of strain! Tonight Drs explained to me after a really bad day that we have options still if things aren't going well. 
But they are worried the clot around the stent in my heart will fall into my lung! 
I just need lungs so bad but I'm forever hopefully and bloody hell I've come this far, it's going to happen! 
I've got some amazing people around me! 
But I'm struggling to manage convos, using the toilet. Eating! I just can't breathe! Moved onto high flow oxygen as they said that my sats were ok to come off bipap. So braved it and felt ok. Yeah bad move blood gases didn't agree and heart went mental. So back on bipap! 

I had port accessed today and I'm on constant heprin infusion, which is much better than the blood thinner injections! 

Thank you so much for all the amazing support you have all shown! And please do not think I am ignoring people's messages. I change hourly here and cannot get much of a rest at the moment! 
Life is hard but, the things you want the most are never easy! I'm ready for bed now with my new frozen bed sheets! 

Thank you for almost reaching my target, I am sure the cf trust will be over the moon and I am very proud that my story has encouraged people to help! 

But please if you agree to organ donation. Please please sign up, talk to your family.
Let's break that awkward taboo of talking about death! And tell people your wishes! Let's educate others and let's make it something comfortable and good to talk about and not scary! 
There are lots of reasons for needing lungs and transplants, you never know if you would be in the situations yourself. 
So let's get it out their! And please wish me luck for another call soon! Until then, I hope my next blog is my mum telling you guys I have lungs or even better me telling you all!! 

I also want to say how great the staff are here! But I am truely misusing my frimley family! From the cleaners right up to the consultants! 
I cannot wait to call them up and Speke to them, and at least room 5 won't be hogged by me now! It's a great hospital and needs a million pounds to raise charity wise to help make the unit slightly bigger as there are only 5 patient rooms! I know once I get my life back I will be doing all I c an to help that ward! I wasn't there for long but they all took me in under there wing and I felt like I've been there for a life time! I miss everyone so much! 

Time for sleep now xxx
Here's down pics 
Sexy hair style! 

Me and dad 

1 comment:

  1. So happy you're awake again. It was lovely to check in on here to see how you're doing and to find a post written by you instead of your Mum (no offence to your lovely Mum...her blogging was brilliant and it was great of her to update us on how you are, but obviously if it's you blogging again it means you're back to being conscious!!). Thinking of you and hoping so much you get your new lungs very soon. You deserve it and to be given the chance at a new life. I know we never really got to know each other at the Brompton (my family are so worried about cross infection, which is a shame as it's meant I don't really have many friends with CF and I know it's because they have my best interests at heart) but I feel as though all of us have a tie because of our CF and are always rooting for each other. Anyway, sorry for my stupid waffley post. Just wanted to let you know there are so many people (many who you probably don't know) all thinking of you (in a non-creepy way haha!) and hoping you get your lungs soon. Take care xx

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