Bug season returns!

So I'm back in hospital after a long run of escaping this place, it's been 8 months since my last hospital admission, it seems the only thing I can't escape are the winter bugs! 

Although it's been 8 months, it should have been a lot sooner, but me and my stubborn ways I don't give in quite so easy! 

It's a very weird vibe being in here this time, new faces, new doctors, new nurses, new physios and what I always forget is my new surname! Been married a year November but because of the lack of hospital admissions know one knows my name on the board any more!

The ward is having a make over, mainly rooms locked and sealed up whilst decorators are in, had a little sneak peak at one yesterday...still looks clinical! The kitchen has a new microwave which is also an oven, so far haven't quite got the hang of it, my curry wasn't cooked properly yesterday although my nann bread was nicely oven cooked! Lol I think I've already given up and just sneaking into the catering kitchen at night to heat food up in there. 

So I came in yesterday to my surprise, I just went up to the day ward to be seen by drs and assumed I would go on the waiting list for a bed, my lung function has dropped quite a lot to 16% but my sats weren't too bad sitting around 92 heart rate was on the higher side than normal for me 129 but I'm full of a cold, temperature the lot aswell as chest infection. My crp levels were 88 which isn't too bad considering I felt a lot worse but I suppose that's prob kalydeco working its magic! 

So like I said didn't  expect to get a bed, but once I told the dr I didn't wanna do home ivs she checked bed situation and to my luck, the person who was waiting for a bed didn't answer there phone..so guess it's a case of you snooze you loose! Lol I did feel bad but god I was so grateful for this bed! 

So here I am stuck down in room 1 right down the end of the ward, away from EVERYONE and also away from wifi signal so il defo be racking up my 3G usage whilst in here! 

Bit pissed off today though..back to moaning old hospital George..

Today the physios have pushed all the wrong buttons for me. I always use a machine called the bird when I am admitted, but today I was told I can't have it or might not need it now I am on kalydeco. Well what a load of shit. I'm in hospital cause I have a chest infection not because I'm in here for a laugh, the bird helps me with my airway clearance and there always going on about they do whatever they can to make my life easier, doing normal Physio like the old school way is like a bloody work out, kalydeco or no kalydeco I still have 16% lung function, I'm not running marathons and I might not have declined anymore but I'm certainly not at a "normal" standard of living, I still use my wheelchair frequently, I still use oxygen, Jesus if I was loads better don't they think I would be getting myself a job and living like a normal person again, truth is I'm out of the danger zone I know I'm not in threat of dying anymore! 

My biggest problem is I think too positively sometimes and doesn't always show a true reflection of how I really am, if someone asks how I am, I instantly reply with "yeah good thanks" even if I'm the worst I've ever felt, it's like a reflex to me! It's a good outlook on life but in this situation it seems to have back fired. 

So after being a bit stand offish with the Physio early and refused to do my work out tiring Physio, but was quite happy to have the bird, I did have a really bad headache and laying down and sitting up and coughing constantly is tiring, she left me, so tomorrow the drs are probably going to have been told I refused Physio which isn't the case at all, so guessing this admission isn't going to be simple, feel like I could be back to square one again with drs. I'm not going to pre judge but I think they need to realise what the situation actually is! 

Joys of life otherwise can't complain at least I'm still here to moan! Lol 

Love love x

Hola!!

Hola!!! 

In the sunshine soaking up some beautiful rays, what better time to write a little blog for a catch up! 

So the last few blogs haven't been the happiest, and not something I'm fond of writing about ESP so close to one another.

So here's how things are going in George's world of CF!

Well they say know news is good news which is correct, I have been feeling perfect at the moment, and before coming to Spain on holiday my weight was at its highest  in a while of 40kg and so was my lung function of 24%.

The clear Spanish sea air is also working wonders for these little lungs of mine aswell-oxygen and wheelchair free, so all in all I am we'll in control of this CF business at the moment!

Coming to Spain this time was the first time I have used oxygen on flight from a tank and to everyone who needs oxygen for flying I highly recommend doing this in future instead of using a portable concentrator. 

Normally on a flight I still struggle with the lack of oxygen, about an hour into the flight my breathing becomes very tight and fast and I'm completely exhausted after a 2 and half hour flight....however this time I felt amazing the whole way thru, my breathing was relaxed and calm I drunk lots of alcohol and even that didn't effect my breathing, walked off the plane, whilst my husband was getting the car hire sorted I even managed to get both our large suitcases off the belt, push them to lift, in out of lift and meet my hubby by the car hire place, although he told me off for doing so I was still going strong breathing wise lol and then sat on the suitcases whilst he pushed us to the car...(that was laziness lol) 

Spain has been lovely every day I think how lucky I am to be able to still come away and do all this, how life could have been so different!  

The only time I have used oxygen was after getting stuck in the apartment block lift!

My childhood fear had always been getting stuck in one, I remember watching causality when I was younger and there was an episode where they got caught in one and the whole thing just dramatised me, as I've got older I kinda grown out of it, but every time I walk in I always feel a little bit unsure.

So we came back from dinner the other night and the usual called the lift and got in, pressed level 4 and we started moving, I always watch the number on the digital screen go up for each level...

Level 1- gone

Level 2- gone

Level 3 gone...then stop

Press level 4 again, lift moves a bit then stops.... Press it again and nothing.....

My heart starts racing...so we press the alarm and you gotta keep holding it,

Nothing

Then keep pressing...nothing...then it sounded like it was connected to a phone line but like a busy tone....by this point I'm proper shitting myself its a tiny lift, about 3-4 people size...so we keep pressing and pressing and nothing know one answering or coming...then we start shouting hola hola hello hello lol and pressing button hola hola hello hello stuck in the lift....finally I hear a man shout hello and we said were stuck in lift and he said ok ok il go get security....so we carry on pressing alarm hoping for some sort of response, by this time were both feeling pretty claustrophobic, and it's getting really hot in there and I'm really panicking I can feel my breathing getting tighter and tighter, there felt like no air in the lift, then I start thinking I'm not going to last if we're stuck in hear for hours.

Finally which felt like forever the man came back by this point lee was freaking me out by trying to open the lift door but it would only open a few cm's, the guy came back with security, so there all there trying to open lift doors, then we can see we're stuck between level 3 and 4..BRILLIANT 

There pulling at the door then security goes up to level 4 try's opening the door, all I can think is its getting hot I'm shit scared and what happens if the lift just drops hahaha so I'm sitting on the floor of the lift trying to keep calm haha 

Then they managed after a while to get the doors open and there it is as clear as anything both levels...so next fear I'm going to have to climb out to level 3...then final destination comes into my head ( really need to stop watching tv lol) if we climb out what happens if lift decides to start working whilst getting out then traps us and slices body in half or head or something hahaha...so lee jumps out...right well he's in one piece..now my turn...I don't jump I just get lee to carry me out and finally I'm free...with ALL body parts hahaha and I thanked people for there help but never rushed back to the apartment so quick...I practically ran up them stairs, breathing was a mess, got straight in and sat on oxygen for a good 30 mins.

Was defo something I don't want to rush and do again anytime soon! 

Looking back that all sounds a bit dramatic but trust me if that guy hadn't had heard us god knows we would prob still be there hahaha

Day after we went to a crocodile park and we both go to hold one, that was pretty cool, felt like Steve Erwin or whatever his name was...

Now just making the most of the sunshine until we return to raining cloudy cold England! 

That's all my exciting news for now...prob be another few months until I blog hahahaha il try not too my life's pretty boring now I'm well ;) 

Adios from espanol xxxx

The Dreaded RIP Sammie xx

It sickens me to be writing this blog entry at all but the fact so soon after my last blog, makes it even worse!

As I mention in my last blog, a dear friend of mine sam wasn't doing too great, and I was praying and hoping so much that she would pull through... unfortunately it wasn't the case this time and she sadly passed away yesterday (4th april).

I still Feel a bit in shock mode, doesn't feel real, still waiting for a tweet or post on facebook from her saying "sorry for the scare guys im fine", i don't want it to be real. since finding out makes me feel numb. why did it have to happen to her?, she didn't deserve this, why didn't her call come like others have?, makes me so angry, I know some things in life are meant to be and I normally say "everything happens for a reason" but really what reason is there for this to happen to such a beautiful bright positive person, the world needs more people like sam, she inspired so many, people she had never met she made a difference to!!
some people walk in and out of your life all the time and having Cystic Fibrosis you do meet and speak to some strong inspiring people that have to deal and cope with so much but meeting and knowing sam, she was extra special.
Nothing stopped her, and no matter how unwell she felt, she always would give you the biggest smile and be so positive about things, and so caring and generally always cared about how others were.

Sam had been waiting for a double lung transplant since January 2010, she expected a longer wait as her blood group was type O which strangely although it is the most common blood group, it is one of the uncommon donated blood groups!

This is the link to sams blog
http://endofmytether-sammie.blogspot.co.uk/

theres so much more I want to write but finding it so hard to write things and im so angry at the moment,  I feel like im being selfish even writing how I feel, I just know all her family and loved ones will be hurting and I just want to take all the pain away from them, sam herself wouldn't want anyone to feel like this sad or angry she would still want everyone to be positive and she would know that god took her for a reason.
but knowing the way you should feel and actually feeling one way is two different things and I cant help it..arghhhhhhhhhhhhhhhhhhhhhhh

Please if your reading this and you haven't signed up for Organ Donation please do, I have lost too many friends to this horrible illness, and and two in the last 4 days whos lives could have been saved, familys would still have there loved ones with them, kids would still have there mummy or daddys, partners would still have there husband or wife with them, no mother or father should out live there children and esp grand parents shouldn't out live there grand children.....all this can change by doing one selfless act and joining the donor register...https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp

Rip Beautiful Angel Sammie always be in my Heart xxxxxxxxx

 

The return of a sad blog! RIP CHLOE <3

So I'm back and in mixed emotions this evening...I'm hating on the world!!

Growing up knowing your life would always be short as I was born with this life sentence, yet dealing with reality of losing someone younger than you and who you knew quite well, never seems to become something that's easily accepted or right!!
In fact after hearing the loss of a friend this Easter weekend has hit me like a ton of bricks! 20 is far too young to die!
It's wrong, why didn't her call come in time? Why didn't she get that second chance she so rightly deserved!!

I tend to shut myself away from having friendships with people with cf as I always feared that these days would come!.. My blog is slowly turning into an marmoreal page and I'm hating that, lately I only seem to blog sadly when someone has passed away, and for someone who doesn't have many "cf friends" there slowly disappearing on me.

Beautiful Chloe who sadly took her last breath on Sunday afternoon was a lovely girl, she was always in hospital with me as a kid, always causing mischief, terrorising the nurses and doctors and running away from every physio in sight! She did make my hospital admissions rather exciting and interesting. As we moved onto the adult ward I didn't see her as much, mainly due to the segregation and I'd hibernate in my room mainly, but if often see her in the kitchen. She struggled with her weight a long time before they could list her for transplant and sadly after being on the list she just didn't get the call in time, I saw and spoke to her on my last admission and bless her she was such a fighter and could see she wasn't giving up but there's only so much your body can take I suppose!

My heart goes out to her family, loved ones and many friends. She will be greatly missed!! And il always remember that cheeky little girl standing at my door on the children's ward!!
RIP Chloe Elliot xxxx

Anyone reading this I also want you to pray for another friend of mine Sam, she's going through such a rough time at the moment and has currently been suspended from the transplant list die to broken ribs and cannot be listed until they heal, so lots of healing vibes need to be sent her way so she can be listed again as things aren't getting easier for Sam, she needs those lungs so badly, she's been waiting a long time now, a few years but although she is not awake much at the moment when she was she told luke (her husband) that she's not letting cf beat her!! She's amazing and I know she can get through this, she's a true inspiration and after obstacle and obstacle she's still fighting strong!!

Her blog is on the side of mine, it's called end of my tether
Really good read, her blogs are better written than mine and also written by her husband when times got very scary for her! Please read!
http://endofmytether-sammie.blogspot.co.uk/2013/03/down-but-not-out.html?m=1

All of this makes me appreciate how lucky I've been with getting kalydeco, and going from being in a pretty dangerous state myself and manage to get through it and be stable now, can't help but feel guilty, why was I the lucky one? But like I've said before it makes me want to live life to the max and never give up!!

On that note.....

Please sign up for organ donation if you haven't, your more likely to need an organ than you will ever donate, so if you would take an organ then be willing to give one when you die!!

And tell your family and loved ones your wishes as they have the finally say no matter what your choice is!! They can still say no!

Love to all x

Checking in!

So I'm in a very noisy/cold/boiling hot hospital room opposite the wards kitchen! I shouldn't complain now I'm finally here, waited 3 weeks which is one of the longest waits I've had in years! I didn't realise I was as bad as I am otherwise I think I would have pestered them a little more to get in. Lung function has dropped down to 16% which has got me a bit worried as that's the lowest it's been in like 7 months, but I'm hoping it will race back up and il have a quick turn around since I still have my kalydeco working its wonders...hopefully.

I've slept most of the day as had a rubbish first night, forgot how noisy this place is compared to being home, don't think il moan to lee about watching tv when I'm trying to sleep anymore cause that noise is nothing compared to this place!

Not much else to say hopefully have some good news in next few days :)

Byeeeee

Blog from bed!

Going to try keep up to date regularly with this blog now!

Sorry about the last blog had a lot of ranting to get off my chest!

I can't really put a finger on how I'm feeling at the moment, I'm like a bloody yoyo, up and down. Sunday i was a mess, had this horrible Muzzy head that wouldn't shift, lungs felt like they were drowning me and just felt so tight...yet yesterday I was buzzing and had such a good day, until I came home that evening and the dreaded headache returned, felt quite feverish, hot then cold, goosebumps would come and go, just couldn't settle. Had a restless nights sleep, constantly coughing, struggling to breathe, back to going to bed every night with oxygen, have done now since end of November, just all getting to me now, clearly kalydeco isn't a complete cure for me which I knew it wouldn't be but these little moments just bring me back to how it was waiting for my transplant call...

I think I have an infection brewing cause its unlike me to get feverish without there being more going on, also at times feeling sick, which only happened pre kalydeco.

So after missing last appointment at Brompton due to snow, I've emailed them today to organise going up to clinic next week to see them plus need a port flush as that's over due lol.

Another thing that's been bothering me at the moment which I need to tell the doctors is my eyesight.
My eyesight has always been perfect, these good old big eyes have been in good working order all my life but just before Christmas and esp a lot recently I have been squinting a lot whilst watching tv, or looking at something in distance, really starting to notice it more and more and my vision sometimes goes blurry and I can't focus on things, really bothers me, this could also be why I'm getting headaches or a mixture.

A thought crossed my mind if it could be kalydeco doing it, I doubt it but there's always alarm bells going off in my head with this drug sometimes...
They say when things are too good to be true they normally are...and it's always baffled me that there aren't really any side effects to kalydeco.
This is the paranoid part of my brain kicking in. But think its something to mention to the hospital just incase and going to arrange to get my eyes tested next week as I haven't had one since I was a kid anyways!

Also I'm very jel of the people getting there kalydeco delivered to there front door as I have to travel up to the hospital every 4 weeks for a poxy supply!!

Can't be too jel I suppose, I have been on K longer than everyone else and should appreciate that!

Anyways off to sleep now!
Night all
Mucho loveo

Xxx

Reality of Organ Donation!!

Hellllllloooo

whats on my mind.............

Well last time i blogged i spoke about my dear friend Paul, who's funeral i was due to attend.
As i said before how inspirational this man was too me, well meeting his beautiful family and friends, i can see what an amazing support network he had, and as they say behind every great man theres a great woman and for Paul's wife Sarah this couldn't more true! without sounding weird it was one of the most amazing and uplifting funerals i had ever been too. i felt wrong to be upset, it most certainly was about celebrating his life!! the day just showed how great and kind person Paul was because the amount of people there to show there respect was incredible! i don't think ive ever been in the room with so many people! It felt comforting to me so i cant even imagine how it made his family feel, Paul was defiantly there running the show and keeping everyone going!!
RIP Paul xxx

Theres Something that has been playing on my mind for a while that which i want to share my opinion on!

so a few weeks ago i was reading a friend of mines blog that her fiance had written to update everyone as she was so very ill and couldn't do it herself, and i came across some comments that people or shall i say person had left after reading the entry which has really annoyed me!!

Organ Donation is a tough enough subject for people who are not living a life surrounded by friends or personal experience of needing organs, so every negative comment i see about it i cant help but get angry and feel the need to pipe up!!

so let me show you the comments first...

Well!!!..........
these comments infuriate me!!

lets take organ donation out of equation for a second!!...as sad as it is unfortunately people die every day for many different reasons, its nothing that can be prevented its a fact of life..

by saying that "we hope the call comes soon" that is noway implying that we are asking for someone to die, because normal healthy people don't just choose to become a organ donor and then die to give up there organs whilst there alive....no!! being an organ donor means that when your alive and healthy you make a choice, your just saying yes to join the register so if anything was to happen or you die naturally of age or for any reason if they can donate any organs that are healthy enough to save someone else then that's what your agreeing too! most organs come from people that have had head injury's for which case doesn't matter how healthy your organs are if you have a serious head injury and are classed as "brain dead" then you will not survive...

this is quite harsh reality but i want people to understand organ donation! sometimes you have to say it in black and white to get the message across!

so for this anonymous person to say that it is insensitive i think they are clearly not educated enough to understand or are living in a bubble!! arghhhhhhh
and from personal experience being on the transplant list for 7 months waiting and hoping and wishing that call would come to save me from a life of struggle, never once did i wish death on anyone, in fact that has to be one of the hardest parts to deal with, knowing that some family would be going through the worst time of there life!!

also been watching hollyoaks at the moment and one of the girls is waiting for a liver and another girl said to her that now "someone has to die" to save her...i know this is true but the way it was put across made it sound very negative and because the girl tried to kill herself and now has liver failure because of this its just a sensitive issue and makes it sound like people who need organs bring it on themselves WHICH IS NOT THE CASE!!!...oh I'm going on now but arghhhhh annoyed.com!!!


anyways rant over!!

so my life, has been major up and down at the moment (chest wise), this cold weather is quite frankly pissing me off!! no good on the old lungers! today i popped out for half hour and literally struggled to breathe...stupidly didn't bring oxygen, so as soon as i walked through the front door that went straight on...

well after killing my dog (not literally) lol he had ripped up lees files with all his paperwork in it! haha hes such a good dog normally but today i think he was trying to prove a point as Ive not taken him out in a few days, hes going on "nice dog" strike!

after dealing with that 5 Min's on oxygen i was back to myself again.

recently done a video for vertex the company that made Kalydeco. just a little video to show how kalydeco has worked for me and the difference before and after starting it, something different to do. would put the link up to it but I'm not sure I'm aloud to post it anywhere as its just for internal use for there company and to educate doctors for Kalydeco.

that's about all for now looking forward to the year ahead, as I'm going to be a bridesmaid for my beautiful cousin sally!! and many other adventures..very excited!!

oh and Rylan just  won Celeb Big Bro whoooooooooop!!

mucho loveo

xx
















 

Catch Up and Rip :(

I seem to start every blog these days with the same thing...i havent blogged in a while bla bla

so last time i blogged i was in hospital, you'll be happy to know i left there as planned the day before my harefield appointment. unfortunately to my disapointment my lung function didnt increase, infact it was 1% lower than i was when admitted which i literally dont understand one bit... i didnt care to much i felt great!

so there i was next day waking up for my harefield appointment, firstly i was an hour late waking up which mum was really pleased about...not! haha oh and to make matters worse it was snowing so typically every moron on the roads panics and decides to drive at about 10mph which made me even later picking mum up, then we had to get over to harefield avoiding the m25 in rush hour...it started off as one of those days you just shouldhave stayed in bed! lol anyways there wasnt much to worry about we werent actually late, we just didnt have time to get breakfast first butttt because i was first one at clinic and i didnt have to have an echo done after signing in and having half my bodies blood taken from me and weight and sats done etc there actually was a chance to get some breakfast...full english!! harefield appointment felt weird this time round because i knew i wasnt there to tell them how desprate i wanted lungs..quite the opposite so the day dragged like a bitch! lol

i had my lung function done again and  obviously my lungs just wanted to piss me off as my lung function dropped another 1% so was down to 22% but to be fair that was better on there records as my last LF was 16% there just before i started Kalydeco back in june!

we left harefield at lunch time and headed over to my aunties as she only lives about 10 mins away so had a nice relaxing lunch chit chat sandwich on comfy sofa! was much better than the hard seats in the waiting area in clinic plus there heating was on so high we were pratically falling asleep!

so after lunch headed back and this was the longest part of the day, we waited about 2-3 hours till we saw dr carby. once i saw him though it was pretty quick and straight forward, he could see straight awya as i was walking into his room instead of being wheeled in or on oxygen, i explained how i felt about not wanting to go back on the list etc yet and my improvements, as much as he was dlighted for me and could see the change he was also very hesitant aswell and said i was still "ill enough" to need a transplant but if my quality of life had improved as much and i felt i wasnt ready for a tx yet then he was happy for me to stay off but wants to see me in 6 months and he would have me reactivated at any time, but to also be in contact if any thing changes or worsens, and to make me aware that i still have a very low lung function and im at risk with every infection. which i suppose i forget- my glass is always half full ;) lol it did make me think about it and question weather my choice to stay off the list was the right thing to do, as much as this drug has worked wonders, i still expected so  much more, but saying that ive improved so much from what i had become!! the doctors always said it would "stablise me" and i feel like it has made me alot better and lets say in a safer way than i was before but now i feel like things are now stablised, i am happy though because i still have indepence.  xmas is a hard time to judge as bugs are flying around everywhere and lets face it im not superhuman and i do still have cystic fibrosis and this time last year was potentially dying haha so yeah things are still 100% better...bring on the summer!

i was well and truely ba humbug this year!! i dunno why im not normally like this...i think its lack of money, and i want my house to look nice and get it finished so dont want to spend money on crappy presents that most people dont want anyways... haha plus its so stressfull trying to think what each person wants.. and seeing others stress over it...its bollocks id rather just be around my family and loved ones and enjoy xmas for the real reasons not presents, xmas is for kids and the excitement!...i may feel differently next year though haha

i spent the entire xmas feeling quite unwell, but it wasnt a typical cf unwell or chest infection, i had a normal cold like a normal person...i couldnt handle it haha my throat killed, my nose was blocked, my ears blocked everyting washorrible chest didnt feel that great aswell, was back to oxygen and wheelchair for me! the thing i was worried about the most was it turning into a chest infection...and touch wood im over it all now and so far no chets infection!

new year i decided i still didnt feel 100% to go out raving mad and lets face it, its a complate rip off, bars and clubs charge you tripple and i just wanted to have a good night....ended up being more drunk at home than i would have down going out but enjoyed it with my hubby and bestie so was a good one!! haha

now onto the crap news!
its hard for me to write this as i dont really want to believe its real...
back in may after the sad news about my friend kelly dying i had the most amazing news same day that my friend paul had got his transplant! it was such mixed emotions after hearing about kelly but was aboslutely made up for paul and his family, he has two beautiful kids and lovely wife and he had been on the tx list for about a year and half. he was one of those guys that was ALWAYS positive no matter what i know people say it about people like oh yeah there positive but he really was, he never went in a wheelchair he refused to give in, he would have is oxygen on his back and walked everywhere!! and always had a big smile on his face, we always said that when we both got our transplants and recovered we would train for a marathon, he was very sporty before he got so unwell so he couldnt wait to get back into it all, he said we could do a half marathon as ive always been lazy and might be a bit much for me to do first but we said we would do it together for charity!!

so when he got his call i was the happiest girl in the world...i wanted him to get them lungs so much.
dont really want to go into detail with things but unfortunately it didnt work as well as we had hoped there were alot of complications after and and sadly he passed away before xmas.
i hadnt heard from him since before his call as he wasnt able to get onto facebook which is mainly how we were in contact unless in hospital together then i would see him. i was in touch with a family member of his on and off and wasnt fully aware of the situation...which i now know was because paul wanted to protect me...even after everything he was going through he still had time to care about others!! he was one of the sweetest guys ever met, the kindest man i knew! very real person.
its hard to loose people as it is, but he had a place in my heart paul, i dont think ive cried this much in a long time, was such a lovely guy anyone that knew him or knows him will understand how im feeling, and it all becomes very real when stuff like this happens, selfish reasons its a bit of a reality check too! CF is such a cruel illness!
have his funeral this thursday, and im dreading it, makes it all real then and when i see his family members i know il just break down, but i cant not go, i wouldnt feel right not being there!

hopefully next week will be a better one.

xxxxxxx