You and I are gonna live Forever..life waiting

2011-10-18T13:15:00.001+02:00

piercing fun

2011-10-11T11:47:00.003+02:00

today dads took me out and weve been to get my anti eyebrow and lip pierced had so much fun

Bad news and what been happening

2011-07-28T18:57:00.000+02:00

So its finally happened i have been suspended off the list its up for review in 6 months reason being ive put on quite a bit of weight and seen NO consultant at north staffs for two years so no one has monitored my weight or my health properly. The other reasons are my lungs are so fragile dr carby said he didnt expect me to of lasted this long with being on the vent and being so poorly with how bad my lung function is. Also i am really weak i can't exercise i do try to go on the wii fit but manage little more than 6 mins, and walk up and down the hall or to the bathroom but it is just so tiring. So thats the bad news the good news is ive started a diet only taking 850cals a day and ive lost 9lbs two lots of 2lb and last week 5lbs im going to weigh myself every friday so i will keep you posted on how its all going. The problem is some of the medication i am on increase your appitite im on 50ish tabs a day plus nebs.

fundraising and some stuff thats been happening!

2011-01-28T17:16:00.001+01:00

So today I've had two very kind donations one of £80 and one of £20 these people that keep donating to such a wonderful cause are truly amazing.. they are really thoughtful..
So no cravings still not bothered about chocolate or crisps to be honest.. By now thought I would of been but I have still got my marmite on toast for when I am hungry.. lol.. and my shortbread biscuits they are yummy mums even said she thinks I'm losing abit of weight which is fantastic.. So I think I might keep it up after the month is up..
It feels like argument-central again here at the moment holly had left the front door open so instead of saying am sorry i didn't do it on purpose it turns into a mega row! Which is not good I don't need it on top of everything else I have to deal with.. I am mayor worried about going to see the transplant team in march I just wish my transplant would come and again it hasn't and if I go to see them in march I am just worried that even though I have done all my walking and arm exercises that they are going to take me off the list.. I mean I have forced myself to be so much stronger than what I was when I last saw them but I just feel that it won't be enough..
Anyhoo if any one could be kind enough like these wonderful stokies to donate to LLTGL then heres my link www.justgiving.com/KatySavage thanks so much in advance!

Waiting to go home

2011-01-25T12:34:00.001+01:00

So dads reading his book, whist I mess about on my macbook I've had a terrible morning this morning I haven't been swallowing my salver during the night so this morning I had piles of slime coming up and a mini nosebleed to boot... It was horrible.. I was choking and spluttering everywhere.. I now can't stop yawning.. and my nose s blocked too.. Its been a gross morning so far! So now we are just waiting on a letter for my gp to say what they have done here and how I have been once that all finalized I can go home which I can't wait for.. It feel like forever even though it only been a couple of days and I did get some day release saturday and sunday but it just feel so long since we played on the playstation or chilled and watched a film! So I am having a KFC for lunch when we get out of here no more oatcakes I've had them ever day of being in here... I did yesterday though give them to my dad because I felt sick.. So anyway just waiting on this letter then we can escape.. No I don't mean escape being the drs and nurses have been amazingly lovely to us.. So thats its for now k x

Stoke update and a sicky night

2011-01-22T22:42:00.001+01:00

So last night was the most horrendous night I couldn't sleep I was sick.. Everything had to be changed I sicked up all my painkillers and my medicines it was just plain horrible.. The nurses were fantastic at sorting me out though they changed the bed sheets, they changed my top and changed the pillow cases.. Yes it was everywhere.. My macbook screen is ruined I have emailed somewhere in burton-on-trent for repairs because it blotchy and has scratches going it the screen on the inside.. There are marks all over the screen too its just such a mess grh lol.. I know its my own fault for being sick but bloody hell not on my macbook..
Stoke didn't play very well today we lost 2-0 Tunny was playing, so was Etherington, so was Delap, Collins, Huth, Jones, Wilkinson, Shawcross, Begovic in goal , Whitehead and Wilson.. Subs Carew came on for Tuncay Shawcross got sent off and Faye came on for Collins.. Shawcross got a straight red card he was the last man and he took down the attacker in the box giving away a penalty which they scored bringing it up to 2-0 to Fulham booo... Fuller was a sub but he never came on and Tony Pulis did a speech to th press after the match saying all good things come to an end but we will have to wait and see.. That he had been a great server to the club.. So it looks like he might me going.. It will be a sad day at Stoke when Fuller leaves..Hopefully they play better next weekend which is the FA cup they play Wolves... At molinue.. Which is the Wolves home ground so we are away.. Come on you mighty potters you can do it!!

Last night ahh! Sleep all day lol

2011-01-21T23:04:00.002+01:00

So last night I didn't get that much sleep was sick in the middle of the night so I have had to have a needle in my leg for sickness meds to go through halaperodole is what its called (i cant spell it anyway.) I've alao had my ketamin needle changed to my other arm because it was sore. being sick was horrible had this awful taste in my mouth all day. I hate being sick.. I have been asleep for most of the day after my terrible nights kip.. Dad watched two episodes of lost without me.. booooo lol.. I didn't even say goodbye to him when he went home to sort the dogs and holly out because I was fast asleep... Me and mum have watched Miami ink today its been really good especially the lady who was getting the vampire tattoo from chris garver he is such a talent well they all are on that show ami is my dads favorite .. but I don't have one I just think they are all mega talented! Everyones been so lovely today they cooked me oatcakes again for lunch and I had a beef sandwich for tea again.. so kind..
It looks like my favorite player Ricardo Fuller might be leaving stoke to go to Sunderland .. they are also after Tuncay .. please ricky don't go! We love you! He has traveled with stoke to london for the next match so it aint gone through yet .. But on the oatcake fanzine it says it just a matter of time he been offered 3m to sign to sunderland and has gone for a medical.. according to someone on the oatcake.. But just been looking at google news updates and they say Stoke are now denying that they have made a deal with sunderland so fingers crossed that he isn't going.. you have to support your club that is the only thing that stays constant players and mangers come and go the club stays the same.. My oatcake name is littlekaty21 so look out for my posts..lol
I miss my dogs like mad so tommorow and sun I am allowed to go home for a couple of hours gonna see my lovely friend and her baby can't wait really looking forward to seeing them on sun!!
will post again soon k x
Update - its 12 thirty in the morning and ive just been suck all over my macbook keyboard all over me and all over my bed.. Its gross I don't know whats making me feel this sick but sure all hell wish it would stop!

Today is gonna be the day!

2011-01-20T21:30:00.001+01:00

So I have been really tired and sicky today I havent actually been sick thank goodness just felt sick today. Mum, dad and holls have just left so am all on my lonsome lol.. Me and dad watched lost and I fell asleep so I missed parts of that. Then mum came at 3 and we watched one tree hill and I fell asleep to that too lol. They have started me on a small dose of ketamin because last time I was on it it effected my breathing.. The nurses are soo kind, they made sure I had what I liked for lunch and for tea.. (I didnt like what they had on the menu so the cheif made me something different.) I had oatcake for dinner and beef sandwich for tea lol... I have only been in a day and a bit but I am already missing the burnie babies.. They are my baby girls ans I miss em like mad .. Its hard not having cuddles with them when I wake up and not having delilah following me to bed when dad takes me when I am at home..
Still not craving choccy or crisps at all really thought I would of done with me liking them sooo muchly but no am absolutly fine I need some more sponsors so please people sponsor me on www.justgiving.com/KatySavage it would mean so much to me and all the hard workers at LLTGL because they are the real superstars here..

Going in to the Dougie Mac Tommorow

2011-01-18T18:20:00.000+01:00

So tomorrow I am going into the Douglas Macmillan hospice for ketamin burst to help with my pain relief they are amazingly lovely in their the nurses do everything you want and more.. They look after you so well the place is like a hotel.. They even have a chief because would you believe the food that you have at the hospital is manky and comes from wales. The sad thing is I don't feel very well and don't want to go I just hate not sleeping in my own bed. They are also going to monitor my sleeping because I am not sleeping very well at all..
I am doing really well with my fundraising L emailed stoke today to ask if they could do a bucket collection at the next home match.. She is also going to go round local shops to ask if we can have some prizes for our raffle.. So thanks loads L you are totally amazing.. I aint even craving choccy or crisps I have done really well..

Stoke and things!

2011-01-16T06:34:00.000+01:00

I cant sleep so thought I'd blog..So Stoke Won thanks to Danny H and Tunny.. Danny scored, Tunny played amazing what class... No fuller today boo:( As Fuller is my favorite player I was most upset.. He Has got an injury.. So get well soon Fuller we need you..
I have received lots of support from lovely people .. D has donated a print and R from Stoketshirts have donated a longthrow Signed Rory Delap mug.. Just need to get more people to donate please do!! My Eminem t-shirt and jumper has arrived yay.. No more spending now I have promised mum and dad booo

The Red House Longton !!

2011-01-15T01:29:00.001+01:00

on the 19th feb the red house longton will be holding a charity night if anyone would like to help out by volunteering to sing on karaoke we will be asking each singer to raise just 10 pounds each from sponsors from friends or family with the best singer on the night winning £50 .. any raffle prizes that can be donated ... we will be really thankfull.. please contact katy_savage1@hotmail.co.uk i will give u my address for u to send prizes thanks loads

Live Life Then Give Life

2011-01-14T21:36:00.000+01:00

Live Life Then Give Life have posted about me in their blog http://livelifethengivelife.blogspot.com/2011/01/katie-urges-people-to-live-life-then.html thanks LLTGL.. I am doing my no eating chocolate or crisps to raise money for them.. http://www.justgiving.com/KatySavage
thanks to everyone who has sponsored me x

6 towns radio

2011-01-14T12:46:00.001+01:00

I have featured on 6 towns radio last night and they have posted news about me take a look a http://6towns.co.uk/news/2011/01/katy-savage-and-organ-donation
I spoke to a lovely lady Angela Smith she is fantastic.. x We talked about Organ Donation and what it is like waiting on the list I can only think of one word for waiting and the is 'hell' especially if like me you have been waiting so long... She spoke to my dad too he got a little flustered because it was live but hey we got the message out there and people talking about Organ Donation which is fantastic !

Sponsor Me Please

2011-01-13T15:56:00.000+01:00

I am doing a sponsored no eating chocolate or crisps for a month starting the 15th of January and ending the 15th of Febury Please sponsor me on http://www.justgiving.com/KatySavage

A little bit of tension ans the rest of whats been going on

2011-01-13T15:03:00.000+01:00

So I am playing this great game with my dad Fallout new Vegas and for anyone who plays it we have decided to follow and work for Mr House.. So we are being shot by the Cesar's men at the minute.. Dad has gotten really into it he doesn't hardly give me a go lol.. Hogs all the goes he does hehe.. He's way better at it than me anyway.. Holly did start playing it with us but she does not like all the big scary bugs in it such as giant ants and spiders I couldn't look at the spiders lol they breathe fire and everything proper scary..
Me and my mum have been arguing a lot recently well she alway sticks up for holly everytime me and holls have a slight disagreement she jumps to her defense I reckon she is just feeling abit down at the moment so I am in the firing line.. Which I really don't need but hey thats family life isn't it really. I do love her too bits and she does alot for me I just can't stand the rows.

Me featuring on breathtakers an OB charity

2011-01-12T01:44:00.000+01:00

This lovely lady Lynne Thompson has posted my story on her website to read it hear it is http://www.breathtakers.co.uk/yourstories.html you can also read about lots of other wonderful children on there too..

Thank-u

2011-01-11T16:31:00.000+01:00

So I have met some lovely people D and L they are massive stoke fans like me and dad.. They came round to se us.. and bought us loads of goodies because D is an artist and has his own shop Neckenders in hanley ... anyway D has had a kidney transplant actually he has had 2.. he is such an inspiration of what you can accomplish.. The pic is one of the things they gave me and my family because they are sooo kind.. x

My Tattoo

2011-01-08T23:06:00.000+01:00

Stoke you rock my world

2011-01-08T21:23:00.002+01:00

So I listened to stoke today with my dad they played cardiff, they drew 1-1 but stoke were all over them the 2nd half Fuller played great what can i say i am his number one fan lol... Tuncay played well too he was the one who scored.. I love Stoke City! And I have my dad to thank for getting me involved in football if 12 and a half months ago he hadnt got me listening to it I don't know where I would be today it just give me something fun to focus on.. Instead of all the scary shit!

Things you didn't know about me!

I'm very stroppy and like my own way

I don't like to let too many people get too close it give them chance to let you down

I love my friends and if you are my friend I will back you to the hills

I adore my lil sister she is my best friend

Stoke City is my religion

My family is everything to me

I love tinkerbell and have a tink tattoo

Well thats it for now xx

My facebook page

2011-01-07T23:32:00.000+01:00

http://www.facebook.com/pages/Lungs-for-Katy-Sign-the-Organ-Donor-Register/178000825566310?v=photos
please take a look and like it cheers katy

Thought I'd better blog

2011-01-06T13:15:00.001+01:00

So Tish my dougie mac nurse has been today I have to go back into the Dougie mac for pain relief it takes 3-5 days the dougie mac is lovely but i hate being in away from my family its hard and holly hates me in there awell. Her teacher has been upsetting her she thinks he doesn't like her and has moved all her mates away from her. He wasn't there when I was there so I don't know him but I just don't like it when people upset holly she has enough to deal with. She really didn't want to go to school today which is not good.
Me and my dad are playing on Fallout New Vegas at the mo its really good we keep getting stuck and killed though. keeps me smiling anyway which is good life is so hard on the transplant list and not just for mr my family too.

The article the Sentinel did about me and my wait

2011-01-06T12:37:00.002+01:00

http://www.thisisstaffordshire.co.uk/news/Katy-21-needs-donor-gift-life/article-3070727-detail/article.html

2010, christmas and not being able to sleep at night

2011-01-03T02:23:00.001+01:00

So here i am writing a blog at 1:12 in the morning all because i can't sleep. So here what has being happening to me i was put on the emergency list in sept because i am now to ill to transplant so i have been trying to make myself stronger by exercising my arms and walking up and down the hall. I have also been on the local radio, on midlands today and am going to be in the sentinel publizing organ donation if it gets just one person to sign the donor register then that has got to be a positive. My crimbo was lovely i gave mum dad and holly loads of pressies and we has a great time watching the royal family and benidorm specials. thats about it for now might hopefully next time i blog i will be transplanted heres hoping !!!

eventful day!

2010-06-11T21:26:00.000+02:00

Today I watched the opening ceremony to the world cup and the 1st match, South Africa v Mexico.

Then mum came in and we went to meet the local MP, she was a lovely lady. She said that she would like to help about getting more people to sign the organ doner register. She said that we could either do it anonymously or she could say who I am and what I am going through because to get a transplant my life would change dramatically I would have my life back. I could walk my dogs hell I could walk around without getting so breathless I can't breath or having to use my wheelchair for support. So that was a very positive meeting!

I am now watching France V Uruguay.

England v USA tomorrow com'on England!!

what I've been up too!

2010-06-05T18:22:00.000+02:00

Well this week I've had holly off. Its half term and we have had great fun, we've been up to hanley, we've watched films and we've chilled outside. I also went out for a meal with two of my lovely friends last week it was a great night out we had a great laugh and the food was yum! The dougie mac nurse and dr have been out to see me this week i am falling asleep to much so they are going to give me a drug to keep me awake, which is something i am looking forward to. Also i feel sick alot so they are giving me something else for my sickness.

wishing my transplant would come!

2010-05-20T13:05:00.000+02:00

I've been feeling a little down recently. Just really wish my phone call would come, been waiting 3 years god knows how much longer I'll have to wait now. Just been feeling recently like it's never going to come. Got so many things I need to do which being stuck like this I can't and a phone call would just change my life 10 fold.

feeling sick...

2010-02-10T16:21:00.000+01:00

not been able to watch so many lovefilm films recently been feeling to sicky and tired my sickness tablets have not been working as well as they were.. they were the best thing ever but now I was sick alot yesturday and a tiny bit today.. got the lovely dougie mac nurse coming tomorrow so she should be able to come up with something.. Got to feel better holls is making cakes today... Crufts tickets have come today don't know how we will go but we will it was the suprise xmas pressie I sorted out before I caught swine flu... We have got harefield 1st on the 3rd of march, mum caneled the 1st one because I was so unwell and we didn't think I could make it.. will blog again soon K

swine flu, hospital, a lovely xmas and being wheelchaired to the bog!

2010-02-06T18:51:00.000+01:00

I've been wanting to blog for a while but every to I try to I end up feeling sick, you see I've had swine flu just before xmas which put me in hospital for just under 2 weeks and was told if I hadn't been looked after so well I wouldn't be here, which is a very scary thing. Anyway I spent a week and a bit in pediatric intensive care and 6 days M.I.U ward 11 and you can still see my bloody I.V marks where my I.V's were put in, I was like a human pin cushion. enough about hospital now though just a big big thanks to the lovely nurses who chatted to me and listened I appairated you all!!
Anyway now I am on 24 hour NIV and can't manage off it for more than a couple of minutes, I can't walk anywhere at the mo and have to be wheelchaired in the house mum and dad are my full time careers and are amazing we had a lovely xmas and they really made it special for me I am in a lot of pain now and take 20mg of oxynorn every 4 hours and oxycomtin 60mg every 12 hours and some nerve pain tabs. So my tablet intake has gone up but I have to be thankful for mum dad and holly as long as I have them for support I know I can be happy whatever is happening.

the letter and worried transplant post..

2009-11-23T16:26:00.001+01:00

Today I have recieved a letter from Dr C, I emailed the transplant team a few weeks or so ago I had been looking into single lung transplants because have researched on the internet that they are easier to perform / get and with me being so short, and it being 3 years in april I have been awaiting not including the 7 months it took to go and see them, with no false alarms. It kinda really makes me scared that my new lungs just aint coming.. His letter starts off on a really positive note, harefield have done 36 lung transplants this year compared to the 19 they did in 2006 and I raise my baileys coffee to those people who have been transplanted .. It goes on to explain that because of my OB and the showing of bronchiectasis on my CT scan that the I can't have one lung transplanted.. 'if we left these behind in one of your native lungs and only transplanted one lung you would suffer servere complications with infection. This could be life threatening and certainly would have a very servere impact on your quality of life' .. so my extra bit of hope has sodded off out off the window ahh..

On more me matters I am still waiting for my results on my rabbit section in my course really want to know if I have passed I haven't started the new pet obedience one yet, and will have to soon, i've got the local drs ringing me later because of this cold i've got and hopefully they will give me something that makes me feel abit better..
update, pred is back up to 30mg and on some augmentin again great me thinks not lol

what a lovely sunday!!

2009-11-22T22:02:00.003+01:00

Today i've had a brill day went to see twilight new moon at the pictures and Stoke won!! Enjoyed watching them on the telly!! Can't wait go see them again, We loved Ricardo's fantastic goal and Andy Wilkinson / Liam Lawrence played well!! I had a lovely birthday pressie through, that mums mates lovely husband sorted who works at stoke so thanks C, I got a signed Ricardo Fuller pic :D and it said happy birthday katy (spelt right n everythin).. was a lovely and really made last weekend!!
Got to finish my xmas shopping I am so behind this year its really bad I'm normally finished by now,
Been feeling a bit crap recently still havent quite got my steriods back down (transplant team don't like them too high) been using my niv quite a bit more in the day which I don't like doing, its just the time of year thou really.. on a happier note I am nearly finished my animal care course and have started another one to keep my brain active this new one is from ICS and it is pet obedience its all about dogs and dog physiology looks very interesting, hopefully I can get it down pretty quick i only have 6 months bad times ahh!!
Got a swine flu vax jab on friday, then bloods a week on thursday good job I don't mind needles :P lol.. saints are snoring at the mo how lovely and about to watch I'm a celeb can't be bad now can it..

great night.. tiring morning...

2009-11-13T17:53:00.006+01:00

This week has probably been the busiest week of the year!! It was mums birthday last friday which I wasn't very well on.. I am a terrible daughter!! Monday I was feeling a bit better and was my birthday. Got my hair done as a birthday treat on tuesday its really light blonde with pink highlights so my hair looks great its just the rest of me thats fugly :P lol..Last night was a lovely birthday meal out with some lovely friends had a great time.. Got to talk and laugh about normal things and eat my favorite chinese food.. Was a brilliant night..
This morning has been really stressy.. got up shattered... dad got a phone call at 10 to say his job that was good money but stuffing me on my own is prob a no go.. Which to be honest I do feel bad about because as much as I was worried about being on my own it would of just made it easier for mum and dad because it was a lot of money..
Then we got a call from the local pharmacy .. they couldn't get the vitamin d tablets that I have been prescribed because my blood test showed that my vitamin d is very low.. So I had to sort them out via the hospital. So a morning that i thought i could sit and chill me and my dad have spent sorting out these tablets.. left home at 11ish didn't get back in till 2:30.. So bloody tired now but at least I've got them to take now. Got to go for a blood test in the 3 weeks to check that the vitamin d levels are normal which they should be.. while all this was going on mum was in the pub on her lunch hour!! i even got a bog off I'm in the pub text!! How very rude haha..! Also I got my lovely grandads birthday present :D and had a couple of xmas present deliveries today!
Anyway my prednoislone dose is slowly going down back to normal of 10mg 9mg 10mg and I have finished my extra antibiotics I wonder how long till the next lot can't complain though as long as they make me feel back to how I should then that is all that maters.

A very tired birthday post !

2009-11-09T21:51:00.005+01:00

Today has been a lovely birthday.. had some laughs with my mates Racheal jackson heres your tag to make you famous :P and jess made me a lovely cake!!
So anyway got up at 7:30 to this morning so i am very very tired now... I've had a chippy birthday dinner.. woop woop you can't beat fish and chips and smirnoff on your birthday for lunch. Breakfast was a hot toddi haha well one day a year won't hurt I sound like nana off the royal family hehe..
Finally got to open my pressies at 4:30 when holls got in from school.. I've had some money, some lovely clothes a bottle of vodka and a bottle of gin(from mum n dad no less hehe I said these can be my new medies :P) A stoke hat and scarf, some lovely jewelry, Stoke tickets to see them against Wigan.. a bottle of jack daniels 2 bottles of baileys a saint bernard calender.. and some other lovely bits.. These are just so I can remember later on what I had..
Had an email today from my local team on my blood test my vitamin d is very low so i have to have an 8 week course of tablets to get it back up to the normal range..
Then later nicky the transplant co-ordinator rang me.. I thought is this finally it lol.. just a routine call to see how I am but very nice of her to ring.. What a birthday it could of been though new lungs to boot.. still a great day thou.. dad even opened the johhnie walker blue label it was a beaut we werent going to open it until i was home from being transplanted but I brought it for his birthday over 2 years ago now so we thought my 20th was a good time to give it a sip.. :D
Saw the transplant awareness adverts in the adverts for results show of the X-factor last night heres hoping that it encourages the people who do want to save someone elses life after their death to sign up.. www.uktransplant.org.uk/ukt/default.jsp anyone can do so by clicking here..

So that was my birthday ooh and not that i am a alchi transplant patient or out lol just a little bit of something I like every once in a blue moon can't do me any harm hehe

can't sleep and this is beautiful

2009-11-08T00:30:00.003+01:00

I Wish you Enough

A touching story.

Recently I overheard a Father and daughter in their last moments
together at the airport. They had announced the departure.

Standing near the security gate, they hugged and the Father said,
'I love you, and I wish you enough.'

The daughter replied, 'Dad, our life together has been more than
enough. Your love is all I ever needed. I wish you enough, too, Dad.'

  They kissed and the daughter left. The Father walked over to the
window where I was seated. Standing there I could see he wanted
and needed to cry. I tried not to intrude on his privacy, but he
welcomed me in by asking, 'Did you ever say good-bye to someone
knowing it would be forever?'

'Yes, I have,' I replied. 'Forgive me for asking, but why is this
a forever good-bye?'.

'I am old, and she lives so far away. I have challenges ahead and
the reality is - the next trip back will be for my funeral,' he said.

'When you were saying good-bye, I heard you say, 'I wish you
enough.' May I ask what that means?'

He began to smile. 'That's a wish that has been handed down from
other generations. My parents used to say it to everyone..'

He paused a moment and looked up as if trying to remember it in
detail, and he smiled even more.

'When we said, 'I wish you enough,' we were wanting the other person to have a life filled
with just enough good things to sustain them.'

Then turning toward me, he shared the following as if he were reciting it from memory.

I wish you enough sun to keep your attitude bright no matter how grey the day may appear.

I wish you enough rain to appreciate the sun even more..

I wish you enough happiness to keep your spirit alive and everlasting..

I wish you enough pain so that even the smallest of joys in life may appear bigger.

I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye.

He then began to cry and walked away.

They say it takes a minute to find a special person, an hour to
appreciate them, a day to love them; but then an entire life to
forget them.

TAKE TIME TO LIVE....

To all my friends and loved ones, I WISH YOU ENOUGH

piss off cold.. and the rest of the week

2009-11-07T21:11:00.002+01:00

So dad has got a job soon or should have as long as it comes of (his cousins husband is sorting it through his work) was ment to be starting on my birthday how bad is that ? At least that ain't happening lol not because he didn't want to though because it isn't all sorted yet!! Down side its in plymouth.. (and the reason this bit sound bitchy lol) 4 and a half hours away.. 10 hours a day go at the start of the week come back on friday.. good money just won't get to see him.. I wasn't to happy was really upset to be honest I know he needs a job, but was really scared if i get a phone call then wouldn't see him before it all happened... Anyway he's driving down not taking the train so there is less chance of that happening.. I'm on my own for a lot longer.. will have to go back to the one meal a day routen when i am feeling too ruff to bung something in the mircowave (so thats nearly every day then haha) mums gonna do half days some days and 8-3 others so am gonna feel like shit and lonely haha!! Thank god for lovefilm!!
My mircowave is ace though... I can now have a mocha when i wake up the last time 2 years ago I tried to use the kettle i burned my right arm.. can't do that again that is where my lovely tinkerbell tattoo now sits with the oasis quote and everything !!! She is nearly a year old is my wonderful inkage.
Going to get a louis malloy tattoo in march belles portriat with her name and snowflakes because when I was a really young kid we used to play frisby in the snow she loved the snow when she was a young dog and I just need my baby girl with me forever.. When I last went to harefield her picture sat on my knee whislst I was doing my blows.. they bloody hurt last time as well lol, her picture got me to get them slightly better than the 1st 3 because the lady was saying they were down they were still down in the end but not as much so that was better.. Belles gonna sit on my other forarm..
Had a badish cold for mums birthday up to 30mg prednisalone extra nebs and extra antiboitics, I spoke to Gp on the phone credit where credit do he was really nice but wanted to come and see me well i would of been going the bad place because they don't know that wheezy is normal loads and loads of rubbish isn't or sneezing for that matter but I am ok lol.. not spending mums birthday or mine there .. lol
will blog again after my birthday so i can remember later on what I had hehe.. oooh and my dad aint terrible or anything the 1st post makes him sound it thats not what i want ANYONE to think its just how it is!! mums ace too shes got our hair booked in as a birthday treat gonna get some nice colour put in it <3 how kind!!!

http://www.lovefilm.com/qtqkbe6wg/visitor/sign_up_1.html

2009-11-07T13:34:00.001+01:00

Love film link .. share the love!

update.... haha I've had a giggle daily life can be hard and funny its all good

2009-10-25T21:37:00.003+01:00

Friday was a adventurous day
I had a clinic appointment in the morning soo. Mum nearly crashed into an ambulance called an old woman a silly numpty only in the car. And had a row with anther old lady about a spot.. old woman"I'm sorry I've been waiting"
Mum " So have I i've been driving round and round"
Old woman "I've got an appointment
Mum " WE ALL HAVE THATS WHY WE ARE HERE"
I thought it was classic
So when we finally got in to the waiting room.. and in the office it was decided .. bloods to check cal levels no blows no point haha.. nice way to put it me thinks.. Prof was pleased with how I am getting on.. and how I am coping/ managing to not catch too many bad things :D:D:D just gotta keep away from those bugs -- not a truer word said lol
On the way back me and mum decided to go the pub.. We got home waited for dad to get in and went to "nice one at ruston" haha thanks mum n dad.. food was scank!!!! No wheelchair access and rude staff lol I struggled up the few steps with dads help and the woman at the bar just stared at uss! Then mum went to ask where can we sit.. because the tables seemed full and there was more steps to the other seating area I was shattered after the 1st lot a meal out is ment to be fun so I didn't really want to tackle the 2nd I soo look forward to the day I can RUN steps I recon that is a truly amazing thing (what a saddo eh!!) Any going off topic.. lol.. Mum went to ask .. where can we sit and she rudely got this lady was 1st when the lady clearly wasn't but hey hoe .. don't like people being rude to my parents that my job lol Haha So we were put at a reserved table not for us lol.. somelse.. but ooh well .. Food was not tooo good, to put it nice .. haha ooh and on the way out we had to tackle the stairs again dad took the wheelchair to the bottom and mum held the door for me . .Any way he only didn't put the break on it nearly rolled into a brand new KA and all u could here mum saying was "THE WHEELCHAIR THE WHEELCHAIR THE WHEELCHAIR!!!!"
I couldn't stop laughing it moved quite a bit of rubbish.. was soooo funny :D

We got home watched heroes and I feel asleep..

Mum woke me up at 3ish because i had my flu jab at 3:10.. dad took me we got there .. booked in I was coughing and got proper meaines from an old smacked arses face woman no scrap that a saggy arse faced woman.. Then I was chattin to dad because they gave me a smoking form to fill in and at 19 waiting for new lungs never remembering having lung function higher than 30ish% having a smoking thing to fill in is soooo stupid.. so this woman gave me meanies again ahh .. I smiled at her then she looked away lol.. made me n dad laugh anyway..

Had a good day on sun.. went to the picks and had a nice time..

Got holls off with me all next week :D:D:D:D

ooh am getting free month trails through for lovelfilm so if anyone reads n wants one Iull send you a link as soon as the post starts coming trough

Feels very pissed off .. and wishes she could make it better...

2009-10-19T22:46:00.003+02:00

My dad who is one off the nicest people you could ever wish to meet (nothing like me at all then).. who had to change his hours 2 years ago so that he was home at 12 oclock for me.. has been made redundant today.. He has worked at 2020 mobile phone for 6 years.. extremely hard might I add.. The place has been cutting down its staff (but they use temps to save money) So he has come in very upset this afternoon.. It just all feels like because he can't work normal hours they have gone after him as an easy target.. Most people would think well sod em then or he can have a couple of weeks off but life just doesn't work out like that when people have bills to pay and a crappy daughter with crappy lungs.. SO that just gives us something else to worry about..
Rant over ..

just thoughts and things

2009-09-20T22:46:00.004+02:00

My week has been up and down I have and am using now my NIV machine it has given me quite a bit more energy.. I have been shopping with my dad he bought me a stoke top C'ON the Potters :D i have manged to wash and dry my hair.. every other day and get dressed my next aim is to get to the top of the drive with my dogs and hopefully no sod that Iul get a few steps walking them.. i will god damn it :P hehe
I only had one night in hospital, I had a room so not to catch any nasties, they had me booked in 2 nights but because I was good with it they took the pressures up then showed me how to do it because they wanted me to do it a little bit more once i got used to it and showed me all how to use it, then sent me home :D I got to see some of the nurses who looked after me when i really wasn't very well.. they were really nice
Its been abit like argue-ment central at home atm.. its getting me down, I try to just get on with most things and be thankful for what i have got n look forward to when I am 'normal' but when its like walking on eggs shells at home its hard and u do end up thinkin sod this am bloody sick of it.. It just makes it harder than it needs to be..
Any way the burnies are wonderful keep me sane..

Belle I miss you...

2009-09-15T22:21:00.002+02:00

I need to get this out.. for all the transplant, O.B crap I deal with its nothing compared to losing you belle.. and maybe compared to some the O.B.. then waiting for new lungs is really nothing.. I mean at least I did have 9 yrs of being well with O.B and I am very very thankful for that..

I just need belle, so these are my feeling exactly .. yes it is the script song changed for belles name but its the close I can get it into words

If you see belle will you tell her that I love her.. If you see belle let her know I want her back.. I'm missin everythin about her.. make sure you say am sweet Fa without her..

<3>

Some good some bad and some bulls*it to boot..

2009-09-08T15:27:00.002+02:00

Some parts of the last couple of weeks have been great...

Holls has been of with me for the summer holiday and we have had a south park summer she loves it..

a couple of days ago I got to go and see Ricky hatton and Frank Bruno at the vicky hall (our local theater) they were really funny I had a great night out with my dad.. and had a pint of magners.. hate sitting in the wheel chair and coughing after nearly everytime I laugh but you can't have everything hehe..

My dad did his drive in the aston martin DB9 that I got him for fathers day he absolutly loved its.. he got up to 95 miles a hour and took over 4 other cars on the track.. It was really cold and my mum nearly ran into someones back with my wheelchair.. But it was a great day out.. :D

I still havent has the results back for my bone denisty scan yet so don't know what is going to go on with that so just have to wait and see..

Have to go to hospital for an over night NIV CPAP or BiPAP to see if it gives me more energy in the day amougst other things and then if it does I have to bring it home swear done the dog will chew the mask.. lol

I had a delilah wake up call yesterday she jumped on my bed to get me up.. almost killed me lol.. then had lots of bernard kisses I think she thought I needed a wash lol the dogs are going though a stage of scratching at my door if I am not up and it closed because they want me up.. I'm so sure most dogs are cleverer than people.. defiantly more caring and understanding than some..

I am starting to bruise up a lot more recently.. a little knock and I get a lovely bruise lol.. I have even got one on my tattoo where delilah knocked onto me.. I didn't think they are ment to show up on tattoos but there you go..

Holls is back to school 2m will miss having her here with me to talk laugh and shout with.. shes a little angle or monster depending on what mood she is in but she is the kindest person I know

So thats me for now..

Monday... here goes

2009-08-03T17:07:00.002+02:00

Last week started my 1st bit of Internet xmas shopping.. got holly a bit of something, mums birthday present (two of them so far) an xmas present for dad and an anniversary present for mum and dad.. Bit of a silly cow me, Christmas shopping this early in the year but with everything else going on and not knowing whats going to happen transplant wise its nice to have something to look forward too.. So had an email this morning to say that my stuff has been dispatched.. that'll be fun over the next couple of days me breathless and the grumpy delivery man wanting me to hurry up lol.. At least Hollys in to help..

Had pulmonary rehab this afternoon.. trying to stop myself from going to sleep now.. it nakeres me.. lol at least am getting out and doing something and no can say i aint trying.. They did a talk guess what it was partly about bloody smoking.. if i hear one more talk on smoking I swear I'm going to hit someone..

So now am chilling with saint bernard snuggles and a baileys coffee bar new lungs..and being normal there is nothing nicer

So thats me done for today..

2009-08-02T13:08:00.005+02:00

O.k so morning has just got better Poppy my two year old saint bernard can tell am feeling a bit crap so she is snuggling me on my single bed.. which really translates to poppy has the whole bed and I have a tiny bit of room.. at least I am warm.. I can smell dinner cooking duck sunday lunch I recon.. smells good not that am hungry but dads savled over it so should eat something..

Bernard Kisses from Poppy to every one

My well list of things to do!!

2009-08-02T12:04:00.001+02:00

Katy's wish list For when I'm well...

To be a proper big sister to holly

Be able to walk my Dogs - Poppy and Delilah - my two saint bernards

Take my little sister - holly to alton towers

Go out and have a good nights drinking with friends

To send my mum and dad to a nice hotel or wine tasting place - to say sorry for putting them though all this

To do a bungee jump

To do a sky dive

Work with the RSPCA or Dogs Trust

Tour the USA

Tour Japan

Go and watch boxing with my dad

Go and see england and stoke city football match

Run a marthon

Compete in the transplant games

And really just to be complete and normal..

What the hell am I doing

2009-08-02T10:53:00.008+02:00

O.k this is really strange.. Here goes .. I'm a 19 yr old stroppy teenager.. short arse 4'11 woop-woop with fantastic parents, a lovely little sis, 2 saint bernards (my baby girls) have recently lost my german shep belle who was 13 and a half who I had since 6.. one day we will cross the rainbow brigde togther baby... I have a tinkerbell tattoo am a mad raving oasis fan and had the luck to go and see them at heaton park .. even if it was in my shitty wheelchair (I swear way too much sorry.. but if I'm gonna do this then I've go to be who I am not a nicer or better version).. I am also waiting for a double lung transplant.. have been for the past two years and a bit... Thought I might document my life on the list so I can look back on it and think... oh my god I was horrible.. haha..
So my life on the list is up and down.. transplant team are lovely(harefield hospital) being short makes it harder to get a transplant.. Hopefully this ex-vivo stuff might make things a bit easier and if the do go down with the cutting down thing so fingers crossed... Luckily for me I don't need oxygen woop woop go my crappy lungs.. I have OB its a rare lung dease that a caught when I was a baby.. recently went to harefield for 6 months check up told them all the things I am doing now got an electric scooter that goes up to 25miles an hour :D only to take my dogs a walk with my dad though so its never been up to that with me ... also doing an animal care home learning course.. would be a dream to work work the RSPCA or dogs trust.. even though I am now going to pluminary rehab (long story) when I went the see the thorsaic sergon in feb she said I was not fit enough I had, had a cold for going on three weeks (I swear drs don't listen at times) .. haha moaning again I hate doing that so am sorry..
Anyway my lung function was still down abit grhh now an FEV1 0.65 over FCV 1.17
part from feeling a bit shit am doing good, just take each day as it comes.. so thats me at the mo,
best to anyone who reads katy x