the letter and worried transplant post..

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!!

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...

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 !

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

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

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

Love film link .. share the love!

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

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...

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

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...

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..

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

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..

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

xx

My well list of things to do!!

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

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