Monday, 19 March 2012

Eventful few days and scariest moment of my life!

Today has been the first day since last week that i feel half normal again!
last few days havent had the energy to think let alone blog!

So the dramas started on thursday! was having one of those lazy days at home, couldnt be bothered to get out of my pjs! felt quite tired and had quite a few chest pains going on. i started the morning coughing up blood, it wasnt much just a bit unusal for me, i never cough up blood and in the past if i had done its only if im coughing too much or too hard!...in this case i wasnt doing either, so was a bit confused, anyways as usual i just brushed it off and didnt make a big deal out of it!

as the day went on i realised it wasnt a good day for me, it was more than just being lazy, my breathing got tighter, chest pains were sharper and felt rubbish, mum was a bit uneasy about leaving me on my own, id arranged to see daisy in the evening but it got to about 7 ish and decided i needed mum to come over, didnt feel right or safe being on my own and i was coughing up more blood.

seen as though theres no A&E at my hospital "the brompton" in london we had no choice but to go to st peters and for me to actually agree to go there was saying something, i HATE the place, i feel like i know more about medicine than half of them there!! there clueless most the time! but at least it was a hospital!

so off we went, firstly no disabled spaces left, prob taken up by fat lazy attension seekers who go to a&e for a headache! lol (i really hate a&e and the misfits that go there and waste nhs time!)
oh and also the people who smoke at the enterance, dont mind me coming past in a wheelchair and on oxygen...people have no respect! lol rant rant grrrr lol

so signed in, still no my hospital number from being there as a child lol and explained how i felt and was told to wait to be seen. i hate waiting for things, and had eyes just gorping at me, was definatly out of my comfort zone! then a male nurse calls my name...whoop finally!!

he asked if he could take some bloods which was fine....then he pulls out a MASSIVE needle so i was like ermmm can you get a smaller needle please, and he trys giving me some bullshit about this being the smallest needle bla bla so told him to go to the peadatrics to get one and apparrantly they use this ones on the babys, i was insulted as if i dont no what size needles they use in hospitals, he was so stubburn and i knew he werent backing down so i just maned up and had the beast of a needle and decided to hate him and curse him in my head! lol the prick! bet he got bullied at school!

then i had my blood pressure and sats etc done and another nurse asked what was wrong with me so i explained i had cystic fibrosis and how id been feeling, so she acted like she knew what CF was then asked me was i on CHEMO?? wtf? so clearly she had no idea what CF was and in her eyes i was a cancer patient brilliant....i think pre judging st peters may have sounded like i was being a bitch but as usually i was proved to be right! haha

not long after i was taken through. thankfully i was seen by a doctor who had actually read my notes and knew what CF was and he had seen i had been a admitted a few years ago. he asked how i was and put me on sats machine to check my oxygen levels, they were hovering around 88% so he wanted to do blood gases, i had prepared myself for the idea of blood gases and im over it all now, so he went to get the bits. my sats started dropping and nurse came in and went out and said u do realise her sats are 85% and they were dropping and mum started worrying then so she went and got someone to sort out oxygen as there were down to 83% and the machine was bleeping away, it gave them a little kick up the arse they started running around then and he came straight back to do blood gases, ecg and chest xray once id calmed down. had me on 10litres of oxygen but was a mask so it doesnt work out to be as high or soemthing i dunno all confuses me lol anyways was a waiting game for next few hours for bloods etc, i didnt wanna stay in i just wanted to make sure nothing bad was going on in my body.

where would my blog be without a piccy! altho mum taking a pic of me lookin rough as....and very unimpressed! lol

just before mid-night he came back that my crp levels were 100 and it came back that i could have a blood clot but he said that comes back poisitive if my infection levels were high and could send me for a ct scan, but iv never had a blood clot before so we both agreed its prob the infection and he let me go cause i said id ring the brompton the day after to get up there to start ivs. so left just after 12!
which i have to say is when A&E starts getting exciting everytime there was a bit of drama my sats got better hahahaha but was glad to be leavign and get some sleep!!
stayed at my mums didnt wanna be on my own.

so that was thursday then friday came- sorry for the essays!

went up for clinic, sats were 85% and lung function was 12% weight wasnt too bad though was 38kg!! its always one or the other with me! lol

although i had bloods and xray all done at A&E i had to get them done again so they were on the bromptons records. but saw my consultant and thankfully there were no beds ;) i didnt want to be admitted yet! it had only been 20 days since i left that place! wanted to do home ivs, so he agreed to let me, so went up to lind ward which is the day unit to get my portacath accessed and be assesed doing my own ivs so all was going ok drew up all the drugs explained i knew how to do it all and what to do if i started feeling funny or react etc, its never happened so i dont worry bout stuff like that!
they put me on tobramycin once a day and Meropenem three times a day and ondansetron three times a day for sickness. all of these i have been having for YEARS and YEARS!
i dont have any problems and im not allergic to anything....or so i thought!

so my tobi had already gone through, the nurses changed over who was assesing me but i had already drawn all the drugs up just had to push them through, so new nurse was sat there chatting to me and mum making sure i new what i was doing, pushed the ondans thru was fine then slowly pushed thru the meropenem, then i started flushing, i think i must have pushed about a 1m thru

and all of a sudden i went dizzy, just the top of my chest went so hot i cant even describe how hot it went felt like i was on fire, i threw the flush into the tray and my breathing went tighter and tighter, all i kept saying was i cant breathe i cant breathe and im so hot my chest my chest made everyone feel it but they couldnt feel anything cause it was inside of me, eventually it felt like i basically couldnt breathe i was panicing so much

 i honestly thought that this is it...im about to die!

i no it sounds dramatic and its not like me at all but i swear to god i thought my lungs had just stopped working and shut down, was the scariest moment of my life, my sats were dropping so much had nurses running around everywhere mum was next to me i went completely blury and just remember mum saying calm calm breathe seeing my sats dropped to 77 i was terrffied and i just listened to everyone,  and started breathing as much as i could then i cud see my sats slowly go up, iv never been so happy to see them in the 80's hahaha remember my body starting to relax when i felt everythign opening up again, had tears coming down my cheeks. was so horrible, had drs, nurses cf nurse and consultant rush up. was horrible, even thinking about it now scares me, never in my life do i want to go thru that again! id rather have my lung collapse 100 times than go thru that again! my temperature had shot up too and took ages for it to come down, they gave me antihistamine.

but still there were no beds and after all the drama a few hours later i was ready to get outta that place! if there had been a bed theres no way they would have let me go the nurse said and she didnt want me to leave, but as lovely as she was, she began to annoy me after checking my blood pressure every 10mins and temperature lol just wanted to go home.

so i didnt go home with ivs i had to go up again saturday to start ceftazidime (cat pee smelling one)
was scared at the idea of starting that incase i reacted like i did to meropenem! but all was ok and was up the hospital again on sunday for tobi levels!

so this weekend i have been exhausted and wiped out, feeling a bit more normal today, just all a bit scary really, and nothing really scares me normally im a tough cookie!

so yeah thats all the dramas in my life....im hoping for a bit of a chilled one this week, obviously after the anne summers party 2moz with my girlees hosted by lauren!! ;) haha

love love

2,117 hours on the transplant list xx

Monday, 12 March 2012

Feelings of Holidays :(

Been a few days since iv last blogged...didnt have much to say, dont wanna write crap on here or just repeat myself constantly!

So last week i spent the begining of the week recovering from the weekend, majority of the time sat on oxygen, was still quite productive! i had my mates over for a "baby shower meeting" for miss hackett, she was very well prepared we all had booklets each, felt like we was back at school!- fun school tho! its all very exciting cant wait for baby bella to be here!!

Then ended up driving miles up north to take Lee to buy a new van! so made the journey worth while for me and made a little de-tour to manchester and stayed with my cousin sally!! was so great to see her, not seen her in ages!
My chest seemed to hold out pretty well, wasnt on oxygen much..bit of a good job as iv run out of liquid oxygen so back to using my old portable oxygen compressor which is tempermental, bloody thing just bleeps for no reason, right pain in the arse!

Weekend i spent at Lees, was beautiful weather, i returned to me favourite saturday night hobby of Gala Bingo in Basingstoke!! I love it!! iv lost my touch tho as i won sod all, so im techniqually £40 down :( you gotta be in it to win it tho aye ;) typical tho a girl that was pregnaunt who was with us won £30!! second time thats happened now!! lol chest wasnt great but didnt want to let on, dont no why but dont feel comfortable using my oxygen around people im not use to! its so ridiclious and i need to stop being like this, lee always gets the hump with me! just cant help it! its not that im embarrassed about it, as most people now no whats wrong with me, but i dont want to make anyone else feel uncomfortable or worry about me! really i should just be worrying about myself! oh well :)

Something thats really bothering me at the moment, and not everyone understands how i feel...

so its that time of the year where everyones booking or talking about holidays for the summer! now im a complete tanoholic and i love my holidays!!
I know some people dont get the chance to go on holidays, but i dont work and its what i like to spend my money on usual. on average i usually go on at least 2 holidays a year and in 2010 before i started to drop alot i had 4 holidays!! would have been 5 if i hadnt fallen so ill in may 2010 for turkey!!
and last year in may i managed to go to spain with my auntie uncle and two cousins and amelie, i had the wheelchair which was great to helpand still managed to get around obviously i was alot better than i was now, if only id realised that it would have been my last holiday!! :(. and had planned to go back to spain for my 21st with family but as my lung collapsed the week before my 21st in july and spending 5 weeks in hospital after having a chest drain in etc i was told i wasnt allowed to fly for at least 6 weeks and my mum was too scared to take me away incase something happened!

so you get the idea i just love holidays!

well now that im on the transplant list holidays are well and truely out of the question...or are they?
when you go for your assesment at harefield and you are told your good to go on the list they say you must live your life as normal, as there is a 50/50 chance of getting it! now as positive as i am, like iv said before im still very realistic about life and my circumstances!

when your on the list, you can choose to come off for example to go away for a week or something, so you get taken off the list and even if lungs come up for you, your not told about this, as it would be like before joining the list, once your back you go straight back on the list!

now i no most people who might read this will be thinking how crazy would you be to even think of coming off the list!? and i should be lucky to be on it! and i totally get that and to be fair if i was hearing this from someone else i would prob disagree with myself but what people dont think of is the bigger picture....

just because im on the transplant list it doesnt mean i will get my chance of receiving new lungs its not like there in a lab somewhere with a name tag hanging off them waiting to be allocated to people...im waiting for someone to die to get them! and not only that, but they have to be on the donor regisiter and/or there family are willing to agree! and at hard times people dont always agree!
its not something simple as a straight forward operation to fix a broken leg!

i might wait 1,2,3 maybe 4 years iv im lucky and my body is strong enough to wait that long, for new lungs and be great if i get them!...
but i still consider myself well enough to handle alot of things, iv changed so much in this last year and i no this time next year i wont be as well as i am now, and because of this its my reason for wanting to go away this year, my family disagree and lee gets angry when i mention it, as what happens if lungs come up when im away, but my point is i wont no! or they say ul spend the whole week thinking about it..and truely i wont, il be spending my week thinking how amazing it is that iv managed to get away and it might be my last chance of a holiday ever.

i just dont want to live my life with regret, if i get 3 years down the line and im so ill and i still havent had a transplant and il think cor why didnt i go on holiday when i was half well enough, why didnt i take the chance, because i no i will regret it! my lung function is 16% but my sats are between 93-95% so i no i could handle it!
and theres also things that arent so important but they still matter, if i do get a transplant, i wont ever be able to tan again due to the anti rejection tablets cause skin cancer, and i cant eat seafood...and i absolutely LOVE gambas pil pil lol :(
either way it will be a last minute decision and if i do go il book a few days before i fly out etc.

i want to talk to harefield about it at my 6 month review in june and see what there feelings are about it and if they support me etc, last thing i want to do is upset them or them think im not serious about all this as thats really not the case!
i just dont want to be waiting around for something that might never happen!

enough about depressing moany old george back to some good stuff!

i have two Amazing friends who have done some charity events for the Cystic Fibrosis Trust!!
firstly my best Friend Daisy Miller did they Nuts challenge with Ruth and someone else! which i think you can still sponsor here http://www.justgiving.com/teams/thenuts and as crazy as she is i think shes doing it in the summer aswell so please sponsor and follow her on twitter to keep updated @Yummydoo. and heres some pics below!!

and this weekend my buddy Mickey did a half marathon in silverstone and again for Cystic Fibrosis!!
1st one of this runs he has completed, please sponsor him for the rest http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=MichaelPark can also follow him on twitter at @Mickey_Parker so you no how he gets on!!

thats all for blogging today

love love

1,950 hours on the transplant list xx

Tuesday, 6 March 2012

#GetFatOrDieTryin... lol

Started my day wayyyy to early for a bum like me!! i was out the house by 7.30AM!!!

my mum and myself were on our way to watford to be a model for something called "house of colour" basically its to get your colours done, to show what colours suit you skin tones best. you are put into a certain season such as spring, autum, winter and summer.

i have had this done before and was told i was an autum but i didnt mention this to them wanted to see what they came out with..well it was the opposite apprantly im a spring!- im not sure the woman was sure and i dont agree i still think im autum haha most of you reading this prob have no idea what im talking about so im not going to babble on, either way it was something different to do for a day and it was free ;)...(love a freebie)

as for my chest, today wasnt a great day for me!it started off bad, was really struggling this morning and have been on my oxygen all day, couldnt walk around tescos earlier had to stay in wheelchair and with oxygen on...think im still recovering from the weekend!

but hey ho gotta crack on with things...

when i was in hospital i was sent an email from a woman off twitter who has CF who finds loads of high calorie foods etc...she sent me this email for a cheesecake!! check out the Calories in this badboy!!!

"To make in a 21cm cake tin with push out bottom:

360g digestives
150g unsalted butter
750g marscapone
150g sugar
300mls extra thick double cream
3 tablespoons of vanilla extract


Bash the biscuits into fine crumbs then melt the butter in saucepan and then add the crumbs into it and mix them, put into the cake tin and press it down, leave in the fridge for at least 30mins


Mix the marscapone, sugar and vanilla extract in a bowl then mix the cream in a little at a time, put over the biscuit base and smooth out, leave in the fridge for 4hours.

That recipe is approx 7360cals for the whole lot but most I've managed is about 1/2 because it's quite rich. I'd get someone to make it for you though, I've got a lung function around 50% and I get fairly breathless and struggle to stir the topping it's so thick! Hope you like it :) x"

so here is the following pics of of my attempt of making the cheesecake... by me (and mum)

was quite impressed! and it tasted GORGEOUS!!

after cooking me and Bianca some fajitas we had a slice each for pudding and just about finished it! so rich but tasted sooooooo good!!

will defo be trying to eat as much as poss! get these calories in me and fatten me up!!

thats all i have to say for today!

love love

1,811 hours on the transplant list xx

Sunday, 4 March 2012

Meeting Fearne Cotton & Night Out

So this weekend has been quite eventful for me!
Taken full advantage of feeling well! Saturday I was invited by my aunt Pamela's friend Adele to a little charity event at Fearne Cotton's (radio dj and one of the celebrity juice gang) mums house! It was selling off some of Fearne cottons clothes and other stuff that she owned etc, and all the money was donated too erm this is terrible that I don't no exactly but I think it was some sort of animal charity save the bears or something!

Was a beautiful day we turned up around 2ish there were beautiful cakes everywhere, made by members of the family and Fearne herself. Obviously I took a few piccys and there were yummy!

how cool is this chocolate shoe made by fearne cottons aunt (i think)

I was told she wasn't going to be there but when we was sitting outside in the garden waiting for people to turn up before the hunt for clothes could start of all of a sudden out comes Fearne lol well I was major excited...but tried not too to let on, played it cool! Lol didn't wanna be one of those annoying people that sees celebs and goes crazy and just embarrasses themselfs.

More people turned up then the little Summerhouse was opened!...that's where the clothes were!! Had a little dig around some of the clothes were so nice but I have a child like body as I wear age 10-11 trousers so there was no way the trousers, dresses or skirts were going to fit, and I also have midget feet which I'm gutted about as the shoes were sooo nice, one of the girls who was with us brought some beautiful high heel red ones...was very jel!...but I'm good for tops! Lol I do have boobs! Lol So I was treated to a few tops by my beautiful auntie!

After some hunting Adele called me outside and there was miss cotton herself and Adele got a couple of cheeky photos which I was SOOOOOOO HAPPY with! She said she was determined to get a photo of us before we left! Thank god for Adele ;) lol I look so small in the photos...although I think she makes me look chubby which I was very happy about ;) She was lovely though and said I saw her at celeb juice and it was a good old one etc. made my day!

Then we went inside and enjoyed the cakes :-) And left with some new clothes and a very happy lady! That's One to tick off my Bucket List now!
Oh and managed to do the whole afternoon without my oxygen...although on my way to my mums I did have a little moment in the car but whacked the oxygen on and I was all good again :)

my busy day continued...I Then went over to the rents to see my my other auntie Lynn I hadn't seen since I was about 7-8ish so don't really remember her, my dads sister is Scottish could just about understand what she was saying! Love it! Reminds me off gran from Scotland! and her son Greg and his wife Jo and little one Layla who I hadn't met before we're there too she's so lovely!
Spent the after noon chasing around the house for darcy our cat! Lol

Then left there to start getting ready for me little night out! Was starting to struggle a little bit so did all my treatment and sat on oxygen for a bit to re-charge for the evening!
Then it was fake tanning time, eye lashes, make up then trying to figure out what to wear!? Don't do nights out anymore so had no idea, hate wearing dresses as I have such skinny legs...and it was pretty cold.

Was a really great night, everyone looked lovely, and saw a few faces I'd not seen in a while and met some of lees family. Was good fun! Lee, Phill (his dad) and Ryan his (brother) dance moves kept me entertained most of the night. Chest was ok, didn't use my oxygen, didn't wanna have eyes staring at me! Lol and wasn't struggling, only a bit towards the end!

Paying for it today though, chest feels tight and sore been on my oxygen most the eveing at lees but had a lovely roast and just need some rest days for next few days... but I don't care was well worth it and actually felt like a normal person and not treated or looked like an "I'll person" All in all wicked weekend :) god times... Love my life!

oh and i have been given a little pressy form lees mum max, she brought me and orchid a beautiful white one, shes toldme how to look after it and iv named it morchid the orchid lol so if i can keep this alive il be able to handle a dog hahahahaha

heres some piccys of sat night x

Lee and Me x

Ryan and Lee

Ryan (lees bro) and Me x

love love xx

1,762 hours on the transplant list x

Friday, 2 March 2012

Super Sprog!!

I feel so good at the moment, im eating loads and keeping feeds down so weights good, days like today make me think maybe i dont need a transplant! haha

I built up the confidence to go out shopping today without my mum or Lee or my wheelchair!!
felt so good, i had my oxygen fully topped up and ready to use but i didnt need it, i felt fine...prob should of had it on when i was walking around but i genually felt ok so i pushed myself.
towards the end i did feel tired and admittedly when i got back to the car on the way home i did turn it on for a bit so i suppose i used up all the oxygen and energy i had in my body, but i dont care i did it and i was proud of myself. think its the first time in months iv done it! major boost for me!! i actually felt like old george again not the "ill person" iv become! lol

iv become a bit of a shopalolic since iv left hospital...and its only been 4 days haha
can never have too much retail therapy!

yesterday was quite amusing! me and mum decided we would take a little trip to kingston.
so before we left we did the usually get my liquid oxygen topped up although things didnt go to plan
we thought mum had broken the tank thing, she filled it up and then it just wouldnt stop pouring out with smoke, its like we had our own smoke machine....

anyway we rung the oxygen company and it turns out mum had just overfilled it haha embarassing!

unofrtunately thats as exciting as my life gets at the moment...on a mission to get more people on my facebook signed up for organ donation, got over 700 "friends" so even if half of them sign up thats a boost!! most people seem to be keen on the idea....just people are too lazy to actually do it!! even though it takes less than two mins! and all there doing anyway is pointlessly sitting on facebook looking at people moanign about having a cold or jeremy kyle like status!! lol people need to sort therelives out and realise how important life is and it is what you make it!

oh well they cant all be perfect like the can they ;) haha..(being sarcastic btw)

love love

1,710 on the transplant list xx