Monday, 30 January 2012

946 hours listed!

helloooooo!!

well im alot happier since i last wrote on here! as i said though very rare for me to be in that type of mood!

Havn't been as well recently. i know i havent put much weight on, and once i get like this its so hard to get it back up quickly my stomach feels like its strunk and i constantly feel sick! getting quite a few chest pains now and then...catches me and feels like im being stabbed or someones got there hands on each side of the lungs and squeezing them!! its horrible!..im definatly pushing my body, its in need of i.vs. however i dont feel like im in desprite need for them so in true george style i will wait, i have a few things i am doing before i can comit to a 2 weeks of hospital admission. which brings me to why i am also alot happier at the moment
  1. i have all the girlees over for a sleepover on saturday night for daisys birthday....as i cant go out clubbing shes decided to do this!!- proper best mate to think of me on HER birthday!!
  2. i am going to Olly Murs concert with lee on sunday! which i cant wait!! i love olly murs :)
  3. and lastly i am going to watch celebrity juice with mickey and lee on the following wednesday!! cant wait as i LOVE that show!!! really hope theres some good celebs on there...fingers crossed may even get to meet them....il have to find out whos gna be on thre and get tweeting to them!! so best make sure i get all dressed up and look pretty! defo need to buy some lashes for the occasions and get fake tanned up!! will look like the most glamorous person in a wheelchair haha!! whoop
so quite an exciting week coming! finally...feels nice to be doing something! last few weeks just felt really bored with life, had nothing to look forward to, had nothing to plan! feel so ristricted these days but not now, all positive again!

also i have a bit of a problem at the moment....my redbull addiction is back!! i dont know whats wrong with me, i crave it so bad when its not around, im having at least 3 a day...its so expensive too!! and when anyone drinks mine from the fridge i go into complete panic! need to break it, but its so hard!! feel like a drug addict!! lol

one thing iv learnt about myself recently is i dont realise how ill i am sometimes...i have a natural reaction to say yeah im fine, when reallyim awfull, i hate to dwell on how ill i am and hate to make a fuss! even at my stage now i still act like im fine!
i have also learnt some new names for things...like i often get chest pains but just ignore them and dont make a fuss and apprantly there called plurity or something lol you'd think after living with Cystic Fibrosis all my life i would know little things like this! lol but nope im oblivious...

anyways all for now, il continue to wait for my new life and hope a donor becomes avaliable soon! want a life back!

Wednesday, 25 January 2012

on a bit of a downer....

feeling really unlike "myself" today. im normally a really happy bubbly positive person, but today i just feel low!
so much going through my head im just fed up! lol even writing this now i cant take myself seriously its so out of character!
i tried to act all big and brave today when my mum parked up in a carpark in gerrads cross to walk over to marks and spencers and i was saying i didnt need wheelchair or oxygen...well as soon as i opened the car door and jumped out i started having a coughing fit! so after laughing and half dying i decided to sit in the car whilst mum went into the shop! got to laugh at the situation, but secretly its moments like these that just get me down!! this time last year i didnt need oxygen my chest was bad but nothing compared too now!!

i dont think my head has quite caught up with the speed of which my lifes changed...i still think i can do all these things but when i attempt them i cant. i hate the fact i cant just leave my flat on my own anymore without my mum/someone, wheelchair and oxygen. pisses me right off!!
my freedom has gone!

another thing thats really getting to me is my living situation, no1 understands quite how hard it is to get from my front door down to the carpark, iv run out of energy even thinking about it, it gets me down so much! the council arent interested, so im stuck here until the right place comes up. it would just make this stage of my life alot easier to deal with and happier if things were different, i need a nice bungalow with a driveway, somewhere i can call a home! im so lucky to have what i do have but its just not suitable for my health needs now and soon i can just see myself staying in all the time its so stressful even at this stage now leaving the flat and my health is only going to get worse before it gets better!

im letting it all out tonight cor....

another thing iv noticed is, this doesnt really bother me as much to be fair but since my healths declined i really have found out who my close friends are now!
its such a struggle to arrange things and go out and its normally the evenings that everyone is free and its always the worse time of the day for me! so i love having my mates over, i mean i dont live at home so if anything im in a better situation than my friends but yet most of them never bother to come over anymore...only if its major event i even see them and yet there always meeting up with each other...
the friends that do bother are great though i cant fault them and they really are there for me no matter what!!

and last just to had to my downer mood..this is just a bit of a childish want what i cant have moment...but I REALLY WANT A DOG! lol
it would complete my life...but yet again my living circumstances mean i cant get a dog...cant have dogs in flats and even if i was to sneak it in without telling my landlord realistically its not fair on the dog because i wouldnt be able to take it out when it needs the toilet and i dont want it to learn to wee and poo indoors and it would prob fall off the gap in the balcony, and it would be pretty discusting having it poo and wee on the balcony.

rant over for now

my mum brought me a nice little thermometer today, just because iv been feeling a bit feverish the last few days, so thought its best to keep an eye on things, and i think im heading towards ivs which i defo need to go in for this time! but im going to hold out until after daisys birthday and Olly Murs concert at the o2 :)

to cheer myself up tonight i decided to decorate one of my eyelids in leopard print lol bordem!!
was pretty cool tho


heres a few piccys from the weekend with some of my family.




Monday, 23 January 2012

Never ending weight problems!

Ive had a really nice weekend with all the family, was really good to see them all, hate the fact they don't live 5 mins down the road. everyone said i looked well and i do feel genually pretty good at the moment, although the weight has become a problem again!

i have lost more weight than i imagined i had...iv been in denial about it. its one of the hardest things i find to manage these days! id LOVE  to be fat and have to loose weight, but no im the complete opposite.
weight dropped to 36.3kg which is what i weighed friday night, i was shocked myself! i never thought it would have dropped that low again, and im in danger of my lung collapsing again if i was to get a bad infection as i was told that was one of the reasons which caused it to happen last time, that alone scared me and gave me a kick up the arse!
also with my weight being this low, i will be temporally be taken off the transplant list which would be my worst nightmare, i cant afford to loose a chance of missing out on getting new lungs! however if i was to get a call now theres a high chance they would refuse to do it as my weights so low.

This is one of the most things im looking forward to after transplant, not to have to worry about me weight, will take such a strain off my life! plus i use to love my food, but the last 2-3 years i feel like i have some sort of eating disorder, its all i seem to ever talk about...my weight or people nagging at me to eat! i know they mean well and to be fair unless they nag me i wont bother...

well anyway since friday i have really focused on getting my weight back up. i havent managed to do a feed but iv been eating as much as i can push myself and with nearly all my meals and sometimes inbetween i have been drinking my fortsip strawberry drinks and tonight i weigh 37.6kg so it must be working, 2moz im goign to try and feed and hopefully keep it down!!

chest has been as good as it can be. still using my oxygen during the day, i try go without it sometimes to see how i cope and do well sometimes then sometimes i just take a funny turn i cant breathe or speak and just need it! so strange...funny the way our bodies work!

thats all for now big brothers starting :)

Thursday, 19 January 2012

Bye bye iron tablets!

well today i woke up with horrible stomach pains AGAIN! i literally had to keep curled up it was horrible and all i had to drink all morning was strawberry water and even that i couldnt keep down. everything calmed down a bit so instead of eating something heavy i decided to drink one of my fortisp drinks to see how i would react, it only has 125ml but has 300 calories. so if kept down would be a good start.
the pains caled down and i started feeling better until about an hour or two later and ended up throwing up the drink...was gutted so decided it had to be because of these iron tablets i have been put on....
i was gettin these pains the other day and my appetite has been down recently and couldnt work out why so decided to stop the tablets to see what happened and all the sypmstoms went so took the tablets again and then obviously today happened....so i rung the hospital to let them know as my iron levels have been low and harefield told me for transplant i need to be on them...but my weight it also so important and by taking these tablets im loosing so much weight.
the hospital agreed with me so now i have stopped the tablets going back up on the 17th feb to clinic so going to have another blood test to check the iron levels and if i need another infusion will just do that instead of making me take the pills. i feel alot hapier about all this, which means i just need to focus on getting the weight back up to normal now!

other than all that my chest has been pretty good today, im clearing alot but the way i look at is at least its coming up and not getting stuck.

also today i found out from someone mesaging me on facebook that my little story was in the local paper, i hate the picture however the way it was written was good its getting the point across and hopefully will help, was the first time iv ever done soemthing like this so was very nervous, im hoping il build up some confidence and get use to doing things like this and no exactly what to say. most important thing is to get people aware of organ donation!!


had my hair extenstions put in this evening as over the years my hair has become so thin after loosing so much weight so feeling good about myself now :)
thats all for today really x

Wednesday, 18 January 2012

Proper Blogging Begins

Right so now i offically started this blog i can start writing on a daily basis, il write a little bit of whats happened since i have been listed.

i had to start the iron tablets which i did before xmas, however my body decided it doesnt like them!
i started getting really bad stomach pains and was being sick, which for me all my sickness had calmed down so i get really anti at taking anything thats going to affect that- obviously this was a hard one to mess about with as my iron levels are low, and i was told by harefield i needed to be on them whilst waiting.

i spoke to georgie my lovely doctor at the brompton when i had my clinic appointment just after xmas and told her the situation so she suggested lowing the dose of the tablets and to come in once every 3 months for an iron infusion.... i just wanted to do anything to stop this sickness as i had already dropped my weight from 40kg to 38/39kg again :(

so i had my infusion on the 9th january. was so odd, it looked like coca cola in an infusion bag!

so was told after i had this i had to wait 3 days before i started taking the new iron tablets. so i did, and my sickness is slightly better but still getting the odd stomach cramps and havent got my appetite back completely yet, but i think im a bit scared as stupid as it sounds, after the whole peg experiance and havign such an issue with sickness, i think i almost convince myself im feeling sick soemtimes even weather i am or im not.... think i need to mention this to the doctors before i loose or cant stablise my weight, the last thing i want is something so stupid like my weight to stop me from getting my chance of a new life, esp after all the hard work iv done getting my weight back up!
just on going hassle....i would kill to be over weight and have to diet!!

so chest wise recently i have a pattern occuring...i seem to get quite bad in the evenings. no idea why. it can happen even if ive spent the whole day in bed being lazy or iv been out for the day with my mum. and getting to sleep at night time seems to be a battle with my lungs... my body and my eyes want to sleep but my lungs have other plans! so every time i attempt to lay down or get settled i begin to have a coughing fit! in the end i become so exhausted from couhging i just dose off!

iv had a good day today with my chest, was quite supprised how long i lasted out, we left the flat at 9.30-10ish and didnt get back til 8 this evening! i think it will catch up on me tomorrow though- fingers crossed it doesnt and i have a good day!

right thats me done for today off to attempt my night of getting to sleep.

btw 637 hourse listed!! (26 days, 13 hours, 10 minutes lol not counting tho)


Would I Be Listed??

I had been told I would get a phone call on the Thursday 15th December 2011 and so I did from mandy (tx nurse) it was good news they were happy to list me, just have to make sure I put on more weight and get started on some iron tablets. Was over the moon and glad nothing was going to hold things up! She asked me bout the dentist though as I had to get the all clear from them before they could complete the paperwork, we had managed to get an emergency appointment the following Tuesday.

So Tuesday came, I saw my dentist, my teeth were in good condition apart from the fact I needed to see hygienist to learn how to floss and they were a bit gruby.

So rung harefield later in the afternoon to let them all no I was cushtie and when would I no when I would officially be on the list…I was then told I need a letter from the dentist to confirm I was ok before they could do paperwork (it wasn’t brian I spoke to) just seemed to always be something, never straight forward. Rung dentist got them to do a letter but they didn’t have a fax!! Arghhhh

Spoke to brian on the Wednesday  he said not to worry just put it in the post and he will get it all sorted cause I was all ok, he couldn’t do it that day but he said Thursday he would do everything and ring me to let me no when I was listed….i just wanted to be listed before the xmas weekend!! As horrible as it sounds..people do stupid things around xmas so I didn’t wanna miss my oppunity.

THE CALL CAME!!

Thursday 22nd December 2011 at 12.20pm

Unknown appeared on my phone, yes it was the little irish voice I had learned to love to hear at the end of my phone! I was officially LISTED!!

And he made me a 3 month phone appointment and a 6 month appointment with Dr Carby to have tests etc done again to make sure they was no changes and to monitor me I suppose.

This was now THE BEGINNING OF THE END!

Harefield Assesment 1&2

Harefield Assessment


so iv been pretty chilled out about this harefield talk, its always been talked about for a long time now, constantly been waiting for the letter to be sent from the Brompton to them and to be honest I don’t actually no when the referral letter was sent but I received my appointment through the post and after thinking I was pretty chilled about it all and didn’t really affect me, when I opened the letter my true emotions were revealed! My eyes filled up as I read first meeting with dr carby on the 7th December! I was excited but felt sick at the same time…just ment it was all really happening now! So I ran in to lee to show him- he was completely oblivious to my reaction lol then rung my mum and told her and she was over the moon then asked me how did I feel and that’s it I started crying…she always manages to do it to me lol. It was good tears just nervous I suppose, I just take things as they come and don’t really dwell on things too much but this is big stuff!
Anyway I knew my weight had to be good for then and wanted to be at my best when they saw me so they couldn’t say no…
Not long after a few weeks I think I received a call from harefield saying that they had to cancel my original appointment and could I come earlier on the 23rd November…I was delighted as I was eager to get there to meet the team and see if I was suitable.
After this phone call my emotions really started playing with me, it was all I could think about all the time…then I started to doubt if I was ready, or am I ill enough is this the right choice to be making I went into complete panic mode!
Just sat down with my mum one evening and burst into tears felt good to let it all out, she said I don’t need to do anything im not comfortable with, which I knew and transplant was defo what I wanted there was no doubt about that I was just terrified.
So the 23rd November came, turned up to the hospital at bout 8.30 with butterflies in my stomach! I was so nervous it was crazy, hospitals never bother me!! Lee and mum was with me laughing majority of the day which at the time I was getting agged with-.it actually did calm me and love them both for it!
Met brian the transplant coordinator and i was a nervous wreck lol and one thing he said to me which played on my mind and got me worrying was that because I was small it would be an issue and would be waiting a long time for lungs L
Had a few tests done the norm had loads of bloods taken which I would have to wait 2 weeks for the results, met dr carby who was so lovely made me feel relaxed and took away or my nervous feelings, he said I was suitable as long as nothing funny comes back in my results etc and had to wait for bloods to get back and then they could book me in for my full assessment, but as it was near to xmas it would be more like feb 2012 before I could be brought in.
 Anyways 2 weeks went past and got my phone call from brian with good news all my bloods came back good so could go ahead and get me booked in for assessment…bad news was the earliest I could get would be march! Unless he got a cancelation L was gutted just felt so long away…
So although disappointed I was planning for march, had loads of things going through my head, was going to try get a little holiday in before, make lee take me to paris etc
Friday 9th December,As we was driving up the knutsford for the weekend (me and mum) we get this phonecall ‘unknown’ my instant thought was harefield so we answered on the handsfree in the car and as I thought it was brian the transplant co ordinator, there had been a cancelation and as I had made it quite keen to them I wanted to get in as soon as I could he was ringing to ask me if I was free the following Monday 12th December for my assessment…I was in total shock and obviously said yes!
As there was no time for him to send out letter I had no idea what to expect, all I knew is I was goin there at 9am Monday morning and staying for a few days so they could do all the tests.
So I started panicking again, I wasn’t mentally ready for all this that quick I was expecting march.
I didn’t really have time to think too much as we was on the way to Nicolas and spent the whole weekend there.
So Monday morning came, mum and lee came with me.

I was put onto F East Ward. I had a lovely nurse…I think she was the sister..cant member her name but she really was lovely,
She told me All the tests I was going to have done and then the thing that I found the worse out of the whole assessment… the wee jug!!
Not only did I have to collect my wee in a jug for 24 hours…I had to walk down to the toilet down the corridor with it on display! Lol embarrassing oh and to top it off, the whole on the lid of the jug was the size of my strawberry water lid…tiny considering I had to pee into it, and I didn’t get a funnel or anything nope I was offered a bed pan..and even that had no way of sieving it into it…the whole experience was not delightful…so lee came up with the good idea of peeing into a cup and then just pour it into the jug! Was the easiest option for me!!
The tests I had were pretty straight forward. The 6 minute walk test was hard work, I thought I was doing so well, but couldn’t finish the last 30 secs of it!
Lung function was the hardest! I hadn’t done the proper tests for a long time now and forgot how tiring it was, if there had been a bed in the test room, I most def would have fallen asleep on it. I was unaware but I didn’t do all the tests because I simply couldn’t handle it! After each test I was asking was that it! He must of seen I was knackered!- it came back at 16%
I also had ct scan, ultra sound, x-ray, blood gases,ermm think that was it and obviously lots of talking and signing bits! Oh oh and at the end of everything before I was about to go looking as rough as anything-not showered or had make up on looked like a complete tramp!! I was asked to have a photo taken! For them to keep on file…so I officially look like a tramp on there records! lol
So that was it I left Tuesday evening…just had to wait for the call after they had there meeting on the Thursday and looked over everything to see if I would be listed!? The most nervous part!

How I Got Here!

Right so the story so far!

I’ve always had cystic fibrosis but was diagnosed at the age of 18 months, so being in and out of hospital has been nothing new to me! However this year (2011) has by far been the most challenging and dramatic life changing year so far!

End of 2010 I had my peg inserted to help with my weight gain as transplant was mentioned to me as a more convincing route to take as lung function had not improved and was still declining, but without my weight being higher, harefield would not consider me and the Brompton wouldn’t refer me!. I think I weighed around 38-39kg then, cut a long story short the peg was an

EPIC FAIL!

and I am now left with a bullet wound to remind me (my mini bum hole lol) so due to having the peg in, my sickness was at its all-time worse between oct 10-feb 11 when peg was removed but seemed to have brought the sickness problems still with me!

After peg was removed it actually had begun to make me feel quite depressed the way it looked as well as constantly making me feel crap from throwing up. The cosmetic side of things wouldn’t have bothered me so much if I knew the peg was doing the right thing and making me gain weight! Even after the peg was taken out I was still feeling a lot sicker than before struggling to eat 2 meals a day! Food intimidated me..and I love my food!

I agreed to start fortisp drinks as my weight was not improving and my bmi was quite low and this showed although the peg had not worked for me and demanded it was taken out, this was an alternative starting the drinks showing I was compliant and know how important it was to get my weight up for transplant!

Weight gain is such a big thing for tx at harefield the Brompton told me, harefield wouldn’t even see me if my bmi was below 18% so obviously this was my main priority!

So I was drinking 4 fortisps a day 125ml/ 300 calories per bottle, realistically I was doing 2-3 a day!

I had a lot of hospital admissions between jan-june 11 and the weight wasn’t getting better and nor was the sickness I was projectile vomiting!

My june admission- The one that changed my life!

I had been complaining of chest pains for about 3 weeks but for me this was unusual, I normally get them for a day or so, but il just do extra physio and whatever was stuck would move and pain would go- but this pain wasn’t going anywhere!

I saw my physio in clinic and we did the usual etc I don’t think we did my lung function because I was complaining of chest pains…. Due to the fact of having this pain I started to ask questions, things like would I actually know if my lung had collapsed etc was just curious….

Saw nick Simmonds and had x-ray, they all came back ok just had an infection and was admitted into foulis Room 19 on the 21st june (dads birthday)

Started ivs and after a few days I was given a tablet called co-codamol (BIG MISTAKE)  lol within 5-10 mins of taking it I was chatting with bianca at the time and she told me all of sudden I turned white, and got a weird pain/ache in my stomach then out of nowhere I was over whelmed with sickness, id eaten A LOT that day so I was determined not to be sick, I ran to the window to get some fresh air and try breathe through the nausea but every time I walked away I needed to go back, did this for about 15 mins and had to give up in the end I ran to the toilet but as soon as I opened the door my mouth was forced open and it was like something from the exorcist lol

I remember feeling so faint and my nurse walking in to nag me about blood sugars but I couldn’t register anything, managed to tell her id thrown up EVERYWHERE in the bathroom, got onto my bed and I just slept and slept and slept, I cant remember much but just remember nurses constantly coming in to check on me and doing my blood pressure etc but I was so tired and sleepy to acknowledge them! And slept all night and through until the next afternoon, the tablet had proper killed me! Lol

I couldn’t eat for a good week as much as I tried even fluids I found a struggle, I lost so much weight and became very weak, was put on iv fluids and then NG feeding was mentioned…I couldn’t say no I was so weak and knew I wouldn’t get better unless I got some food in me, so as much of a struggle it was I maned up and the nurses put it down me (after thousands of attempts) lol

So the weight started to go back on me and I began to feel stronger again which made me feel much happier…the pain was still there though that hadn’t disappeared and was beginning to get worse and worse each day, I was on iv paracetamol and Nerofen was too scared to try any other drugs as I didn’t want a repeat of the co codamol, but it wasn’t doing much and physio was so painful!

So were up to Friday 1st july! Lee had buggered off to Ibiza L I was still in hospital with this pain, so doctors decided to do a ct scan to make sure they weren’t missing anything. I remember having anal angel (my nurse) that day.

So I went for my ct scan around 3ish in the afternoon and remember laying under the giant polo and having to raise my arms above my head and the pain hurt so much in that position I felt like crying, didn’t last long- thank god and was sent back up to the ward…it was a bit of a blur getting back to my room, but got into bed and slept all afternoon!

I woke up around 6-7 hungry so me and Bianca ordered chinese, walked down when it was delivered got back to the TV room to eat it and jo was there too, for some reason I just couldn’t get comfy! Couldn’t eat but I was so hungry!!- the girls went for their ivs and I went to my room and was panicking the pain was unbelievable I rang my nurse and she rushed to get my paracetamol iv (which didn’t work) then had on-call doctor come, talked about pain, said I had my ct scan earlier that day but no one had come to tell me anything was wrong so I assumed it was ok- how wrong I was!! Had another x-ray from my bed and was told I had a slight collapsed lung!

She said it wasn’t anything to worry about, I was still scared and too scared to sleep in case I didn’t wake up, so much was going through my head and it was like mid night didn’t wanna call mum and panic her… lee kept me calm ringing me from Ibiza, all I wanted was him and mum with me!

I eventually fell asleep and remember waking up to oxygen on my face and two male doctors standing over me telling me I needed to have a drain put into my chest FML moment! So my mum got up asap and sally was on her way down….

Anyways missed out on all my plans for my 21st spent it in chelsea instead but was spoilt rotten by everyone!!...I got better as usual- not to the same state as before though which brings me to the reason for writing all this!

So 5 weeks later-

·        Ct scan

·        Lost count of how many x-rays

·        A missed 21st although spoilt!!

·        A chest drain in and out

·        Dropped to my lowest weight ever

·        Ng tube

·        And learnt to do my own ng tube

All in all it had been a very eventful admission!!
me and lee on 21st

my lung collapsed


my chest drain
my lung back up

Tuesday, 17 January 2012

Hello!!- first blog!

Right im just going to write this i have no idea if im writing this in the right place , this blog stuff is quite confusing, il prob end up looking at this in a few months and think im stupid for not understanding but hey ho lets see what happens.

before i decided i was going to write a blog as i wasnt keen on the idea at first, i have already started a little book/diary of my transplant journey for personal use so when i look back in years to come i can see how i felt etc. i am still going to continue to write that but keep one online too :)

hope your all enjoy and im not too boring and if i am please dont bother telling me ;)

love to all x

p.s
dont judge me on spelling and the way it has been written as i was TERRIBLE at english at school!