Wednesday, 7 December 2011

Wide awake

Well it's 6.55am at the moment and I've been awake since 3am. Left Rab in bed so he could catch some zzz's and I've been faffing about in the living room writing christmas cards, playing angry birds on my sexy new phone and listening to the cat snoring beside me. So thought I'd actually do something productive with my time and write a wee blog :)

Not much to report that is of much interest so I'll just ramble on a bit to pass the time. I apologise in advance of any boredom caused from this point on...

Well I'm no longer a blonde bombshell! ;) decided to give in and go dark because I can't make it out the house to the hairdressers and the gingery-blonde with black roots wasn't really a great look. So I am now a 'deep cherry brown' as it says on the box. Rather liking this new look and my hair's so shiny!!! Even Rab couldn't help sounding like a bit of a fairy when he was drying my hair; "Oh my god! It's so shiny and silky!". I'll be getting my arse kicked for that later...

Nearly time for Santa! I think this is the first time I've been excited about Christmas since I can remember. Looking forward to my big dinner on the day (which I'll be making most of. Scary stuff!) and having it in my wee flat. Which means my hoose, my rules. No bickering! Or he/she who argues can eat their turkey in the close! Then it's a quiet night all wrapped up to watch some telly with Rab and the cat. Perfect!

And now I've run out of things to talk about but I think my oxygen concentrator has stopped belting out as much of that lovely oxygen as it should so I suppose I better go and do something about it before I suffer.

Keep the comments coming in I love reading them :) nighty night x

Wednesday, 26 October 2011

No news is good news

The bad news is I'm back in hospital, but the good news is I managed to stay at home for a whole 3 and a half weeks!! That's the longest I've managed without IV's in months! I'm not actually too unwell at the moment (well still needing my NIV 24 hours a day but compared to how I have been previously) but decided to come in for a wee course of IV's to keep me feeling fabby! I even managed to come into the hospital in Rab's car, no blue flashy lights this time.

So I don't really have much more to report than that. Everything's been rather uneventful recently. No calls from Newcastle. Just sat at home with Rabbity and being kept on our toes with Twitch misbehaving - who's getting booked in to have his prized jewels removed soon to try calm him down a bit cause he's being a cheeky wee monster these days! Oh if he only knew...

Hospital is so much more boring when you're less unwell!! All the remotes for the telly's in the side rooms have gone walkies which kind of makes watching the tv a bit difficult. So I'm using a universal remote my cousin got me. It does the job but I can't get the subtitles to work and with me having the hearing of an 89 year old, I can hear the telly but cant make out half the things their saying! Just canny win can you? I'm getting home for a wee bit today though so definitely looking forward to that :)

Will keep you all up to date with the dull goings-on of hospital life (feel free to drop me a text or a wee visit to keep me amused!)

Much love x

(oh and do you like my new blog design for halloween? was getting pretty bored of the other one)

Monday, 26 September 2011

Plan of action!

Just a wee quick update before I go off to pack a bit and watch a DVD.

Yep that's right. PACK!! Doctor spoke to the transplant guys down in Newcastle and decided that they would stop my IV's to see how I cope off of them.
So I had my last dose yesterday afternoon and I'm being shipped off back to my Rab and the kitty cat tomorrow for a night or two then we'll see what happens from there all depending on how I'm feeling and managing at home.

So excited!! Looking forward to just sleeping in my own bed, spending time with my lovely fiance and having decent food for the first time in 4 weeks!

Well that's the plan for now and I'll keep all you sexy people updated.

Much love. Lou

Thursday, 22 September 2011

Freedom on the horizon!

My wee lungs just keep fighting back! They never fail to surprise me :)
I'm now managing a wee half hour break off my NIV once or twice a day and onto 8L of oxygen just through a normal mask.

So tomorrow I'm going home for a few hours. WOOHOO!! Cant wait to get a decent dinner (we're making fajtias. mmmm...) then chill out with a good film and get loads of cuddles from my man and my kitty cat. Total bliss!

And that's just the start! The doctors are keen to stop my IV's and get me off home next week!! It's still not for definite what the plans are but they know they don't want to keep me on IV's too long as it will reduce the effectiveness of them and there isn't much point in keeping me here if I'm not on IV's. From a couple of weeks ago where the idea of me going home was a total no-go and the plan was to keep me in here until I got the call, to suddenly quite happy that I go home and wait for the call there, is a pretty huge step I'd say!

I mean, just because I'm getting home doesn't mean I'm back to my normal self. I'm still pretty unwell and things will be really different at home but we'll just have to adapt and work round it. It'll all be worth it to get to sleep in my own bed, wake up next to my new fiance every morning, eat decent food and have my wee cat to entertain me.

Obviously I'm over the moon about getting out of here but at the same time I can't help but feel a bit frustrated? It's hard to explain but it feels like if I go home I'll be waiting longer. Being in the hospital and knowing I'm going straight from here to Newcastle seemed like the last leg of the wait and it was all finally going to happen. But now I'll be going home to wait it feels like being back at square one. Which I know is not the case and I'm just being silly. I'll get the call all the same whether I'm in my flat or in this wee hospital room

Well I don't think I have anything else to report at the moment so I'll leave it at that and I'm off to wash my hair so I'm all lovely and clean for my adventure tomorrow! Exciting stuff :D

Sunday, 18 September 2011

Just some photies

They say a picture says a thousand words so I'll save my wee fingers from getting tired tonight and upload some photos from the past couple of weeks.

My plan is to keep documenting everything in photos throughout this whole part of my life because I can try explaining things as best I can but when it comes down to the medical things, machinery etc and sometimes it just makes things a bit more interesting :)


My morphine pump <3 (they took it off me cause I kept sending it clattering off my bed and eventually broke it... oops? so I get 2 tasty long-acting tablets a day instead now)


The part of this which was inside the artery in my wrist was flippin hugggeee! When they took it out I thought it was never gonna stop coming! You cant see it from the photo but it also had a couple of wee stitches either side to hold it onto my hand because of it being in my artery. Dont fancy that falling out in the middle of the night!


Yep this is actually my hand. When I was trying to explain to people how swollen I was from all the fluid retention I don't think they quite understood how bad it was. So here's a photo of my fat hand and sausage fingers. I looked like the michellin man! I'm still pretty swollen round my face, collar bones and belly but at least I can grasp a cup again :|


 Couple of photos of us right after our engagement in ICU (managed a quick 30 seconds with my NIV off to let Stuart get some photos)


Me, Rab and our haribo engagement cake (oh and Nana in the background totally oblivious to the fact we're trying to take photos)

Us with our Mummy's

Few snaps of our wee engagement party when I got moved back to Gartnavel. With my Aunt Morag in this one

My gorgeous white gold diamond ring. How could I ever say no to this?! Oh and the man too obviously...

Munching on a big BK trying to get my weight up for transplant. Much better than hospital food.

Friday, 16 September 2011

Crazy crazy crazy!

Well where do I start?! I have to say, hand on heart, that I've just been through the craziest week of my life. For both good and bad reasons.

Suppose I better start from the beginning then...

In my last blog I was on IV's so I finished them as usual but only managed home for a whole 7 days before I had to be rushed back in by the big neenaw with the blue flashy lights. Started back on IV's again (plenty of them too! 3 IV's plus IV steroids plus extra oral antibiotics). But after about 5 days I just felt I was getting worse and was still on my NIV 24/7.

For those sitting reading this thinking 'what the actual hell is NIV?!' I suppose I better explain and it might make everything a bit easier to understand :)
It stands for Non Invasive Ventilation and it's basically a machine that supports my breathing by forcing air down into my lungs to make it a wee bit easier for me and to help blow off the carbon dioxide (Co2) my naughty lungs like to hold on to! I first started using it in December there but only overnight but gradually my lungs have gotten worse and I'm needing it 24 hours a day now cause my lungs just aren't strong enough to manage on normal oxygen alone.
Here's a wee photo of me with my NIV on (we call it my trunk or I get called NooNoo like the hoover from the tellytubbies aha!)



So I don't actually remember much at all of the next 2 days but I know that I was a really poorly wee Lou! At one point it was so bad the nurses phoned Rab to tell him to come up straight away at 5am. I honestly cant imagine how much of a fright he must have got but he came up anyway and the nurse just told him to climb into bed next to me, pulled the covers over both of us and I apparently fell asleep instantly. I honestly don't think I'd have managed to get through that night without him there just to hold me. Then when I woke up my mum was there and later they managed to get a hold of Kirstie at work and Stuart (close family friend). At the time I obviously didn't realise how unwell I was or that everyone thought they might lose me cause of how confused and disorientated I was but looking back on it now its all pretty scary shit!
My doctor then came in and I managed to stay awake long enough to take in what he was saying. I quite clearly wasn't gonna get any better where I was and that he'd spoken to the Freeman who had suggested trying something called a NovaLung. Which is a pretty new thing that's only been tried on 1 other person in Scotland so far! And it's basically dialasis for your lungs; taking the blood from the artery in your groin, filtering it through this machine to remove the Co2 and returning it in through the artery on the other side of my groin. But this would obviously carry loads of risks, be really uncomfortable and would mean having to be kept in ICU until I got my call but without it I'd be too ill to transplant.
I can just remember everyone looking at me to see if I'd understood anything he'd just told me and how relieved everyone looked when I suddenly said to just go for it. I was hardly in a position to be picky and with the closest people in my life round my bed I knew they'd get me through it :)

So within a few hours I was picked up by the shock team and taken to ICU in the Western Infirmary. First time ever in ICU! Felt like royalty having my own private nurse and a big room, all my own beeping machines and the comfiest air bed ever! Just a shame I was there cause I was sick and not to enjoy myself haha!! It turned out that I eventually improved a bit on my own so at the very last minute (5 mins before) they decided not to send me for the NovaLung and just monitor me in ICU for a few days to see if I'd stabilize without it. Which I did cause my lungs are wee troopers!!

Now if all that excitement wasn't enough, in the middle of all this Rab got down out his chair onto one knee and proposed to me with a beautiful white gold and diamond ring at my bedside in intensive care!!! Setting all my heart monitors beeping and alarming like mad too. Obviously I accepted and the whole thing was just so romantic I don't think I'll ever stop telling people about it. People will be sick of hearing the story of Lou and Rab's engagement heehee. The past few months, and the last week in particular, has made me realise that we can get through anything together and I can honestly say I dont know how I would have got to now without him. Words like these are thrown about so easily but anyone who has been with us will know they couldn't be more true when I say that he's been my rock. Doing everything for me from the tiniest wee thing like fetching things round the house if I'm too breathless to walk, to spending all day every day at my bedside in the hospital and getting in touch with his feminine side to help shower me, wash my hair and dry it for me cause I'm too damn dignified to let anyone else see me in the skud! Even taking extra care to remember to dry in between my wee fingers and toes! (he'll kill me for telling you all that aha) But my point is that I love him more than I can even begin to explain and I can't wait to call myself Mrs O'Rorke :)

The plan as of now is that even though I'm doing a wee bit better, they've decided to keep me here in my normal ward (6C) in Gartnavel and on IV's until I get the call and then I'll go straight to The Freeman from here. I'm still needing my NIV 24/7 and we dont know if I'll ever get off that and back onto my normal oxygen before transplant but if needs be then its all worth it in the end. So this wee room is my home now until after I get back from Newcastle with my shiny new lungs but I'm apparently high priority on the list now and the NovaLung is being kept at the Western as a backup in case things go tits up again but hopefully they wont be needed! (touch wood).

Wish for me to get my call everyone and see if we can hurry it up a bit :D I've got a wedding to plan!!

Wednesday, 17 August 2011

Have no fear, I'm still here!

Well I think it's about time I updated this... And I'd be lying if I said I'd forgotten about my blog, been too busy or not had anything to talk about...

But to be perfectly honest, I just couldn't be arsed. Oops? 

Right where do I start? So much yet nothing has happened and when I come to writing it all down it becomes all mashed up cause there's so much to say but by telling everything I'd just bore you all to death and be here for days so I'll just throw down the main ones (that most of you already know but just to fill in the gaps in the bloggy world)

  • Rab and I moved into our wee flat (yey!!) with no problems, I have the place all how I like it and it's all just fabby. We're loving every minute of it and we've not murdered each other. Yet....
  • My life has turned into a zoo! We are now the proud mummy and daddy to Twitch - our wee 3 1/2 month old kitty. AND my mum decided she was lonely after I moved out so she's replaced me with a crazy little beagle pup called Dougal!
  • I no longer have a car. Boooooo! Since my mum took me off the insurance on my beloved wee Polo I've been sharing Rab's Mazda 3 (which isn't as fun to drive cause it's an automatic but shh don't tell him...) but hopefully I should be getting back onto motability next april.
That just about sums up the stupidly large gap since I last posted. My life has slowed down pretty dramatically cause I've just about constantly been unwell and on IV's (I'm actually writing this from my hospital bed). I'm not sure exactly but I think I've had about 5 loads of IV's since my last post in April and spent most of the rest of the time hole up in the flat coughing up a lung trying to keep away from Chatau Garters. Which obviously means days/nights out have kinda gone doon the drain!! Although saying that, I have managed to have a couple of wee nights out where I've probably consumed enough alcohol to make up for what I've lost out on the rest of the time...
So I've obviously still not had any calls from Newcastle offering me my shiny new lungs but they better bloody hurry up before I turn into a walking syringe of meropenam!!

I think I'll leave it at that before this post gets too long. Wasn't really wanting to go into too much detail about anything the now. Like I said, just fill in the gaps! And let you all know I've not forgotten about you's - just neglecting :) and I promise to try not neglect this as much or I'll have the bloggy police on my ass!

Much love my beauuuuutiful readers x

Tuesday, 26 April 2011

Gone Too Soon

Yesterday the world lost a beautiful girl.


Since I found out last night I've been thinking what I could say and right now I'm still lost for words. You only need to glance at her Facebook page and see how distraught all her friends, and those who's lives she touched are.
Jenny McKay was a girl who was in my year at high school and although I only spoke to her years ago when we were all in first year at Park Mains, her sudden death has shocked me just the same as everyone else.


But it really has got me thinking how precious life is. How easy it is to bring someone into this world and even more so, how quickly those lives can end. I hear of people dying of CF and other illnesses far too often. When I do it always gets me thinking like this. But as upsetting and shocking it can be to hear of another young person losing their life to CF, it really hits home when it's someone like Jenna who never had a chronic lung disease or was waiting for a transplant to extend her life expectancy. She was a fit and healthy girl with her whole life ahead of her. With so much more to experience, people to meet, memories to make.


I'm always trying to make the most of now just in case tomorrow doesn't come and get others to do the same.
Smile when you're feeling down and laugh when you feel like crying.
Say yes to meeting someone new you wouldn't normally make friends with.
Try something you've never thought of doing before.
And make sure everyone you love and care for knows it!


There's nothing I can say to everyone that's not already been said or even soften the blow the loss has caused but there's no harm in trying. My thoughts are with all of Jennas' family, friends, and anyone who was blessed with knowing such a genuinely beautiful girl. 


X

Thursday, 21 April 2011

Accidents

Just thought I'd share some lyrics from my favorite band Alexisonfire. Most of you will probably never even have heard of them or if you have, you'd definitely not like them aha :P 
But I think the lyrics to the song 'Accidents' means something to me. Or anyone with an illness really.


love love love them <3 I've seen them live 4 times already and I honestly never get sick of their music!







I'm not sure what's worse
The waiting or the waiting room
"You're next sir" becomes a cruel taunt to you
Recycled air, the smell of sleep and disinfectant
Your God is a two door elevator


Do they even cure you? (Cut me open drug me)
Or is it just to humor us before we die (Repair all my defects) 
If only we could heal ourselves (Whoa whoa whoa...)
We wouldn't need to be hooked up to these machines (Whoa whoa whoa...)


Whoa whoa whoa...


Let's redefine [6x]
What it means to heal


Do they even cure you? (Cut me open drug me)
Or is it just to humor us before we die (Repair all my defects)
If only we could heal ourselves (Whoa whoa whoa...)
We wouldn't need to be hooked up to these machines (Whoa whoa whoa...)


Whoa whoa whoa...

Tuesday, 19 April 2011

Big News!

Right so I've finally got around to doing this blog. I was waiting till everything had been finalised and I knew it was definitely going ahead before I started opening my big mouth and getting myself excited. Which means I can now get excited and tell you all.


What's the big news you ask?.....
.....Well I'm moving out of the mummys house and into my own flat with Rab!! :D Eeee!


First time I've moved away from home so it's a pretty big thing for me. And also with me being at this tough bit in my life waiting for my transplant has made it more difficult than it would any other 19 year old girl. But the lease has been signed, all the paperwork dealt with and we've to pick up the keys on the 8th of May - which is less than 3 weeks away now! Exciting stuff!


It's up in Barrhead and I've got everything so organised to the point where it's possibly even a wee bit obsessive aha. We've even already chosen the colour schemes and what we wanna buy (I've already started getting bits and pieces as I go along). Well.... when I say 'we', I don't actually think I've given Rab much choice when it comes to decor/furnishings/colours... Poor lad! He's just smiled and agreed with all of this! The bossy Lou is in full swing :P


So I'm not sure there's much else to say really. I'll keep you all updated as best I can, but to be perfectly honest I'll probably be pretty busy over the next month or so. I will however, take photos as I go along and upload them for you's to have a wee peek at Lou and Rabs new pad!


Much love :) xx 

Friday, 15 April 2011

A year older

Well I would have been on to update this earlier but I've been busy busy busy! It was my 19th birthday last thursday. Seriously can't believe a year's passed that quickly already! So much has happened, changed, I've grown up, met new folk, drifted away from a few. But the main thing is I'm still here. That might sound a wee bit morbid but a year is a pretty long time when it comes down to illness and needing a transplant. I'm still battling away but I actually feel like I'm coping (physically and mentally) a million times better than I was this time last year.
I mean, obviously my actual lung function isn't any better cause they cant heal themselves (although it would be pretty bloody nifty if they could!) but I can do so much more than I could when I first got put on o2. I can walk further, stay awake through the day like a normal person, get out more, enjoy myself on nights out if I have a drink and generally have so much more energy. So I'm guessing its all down to being on my NIV overnight, working up my fitness levels and building up leg muscle (no longer have wee chicken legs! got myself some meaty looking pins here). Oh and obviously just sticking with all my meds and physio, but that goes without saying doesn't it.


So as I was saying in my last blog that I had plans to go away to Edinburger for a couple of nights with my knight on shining wheels :D
Well it was pretty amazing. I wasn't actually feeling too great but I was determined not to cancel so I dragged my wee bum up there. It was so worth it though. Didn't really venture out much further than the hotel room actually and we only left the hotel on the first night to go for dinner in a wee italian bistro just up the road (where I managed to embarrass myself within like 10 minutes of sitting down by accidently launching my knife across the table... only I could manage these things!), then to a wee pub for a couple of drinks before heading back upto the room to get fired into a nice big bottle of pink champagne. Mmmm! The rest of our wee trip was spent lazing about in our big queen size bed, ordering meals on room service and looking out the huge floor-to-ceiling window over the grassmarket and up at Edinburgh castle. Rab totally spoilt me! He made a potentially dull 2 days in a posh hotel room special :)


Unfortunately I ended up back in hotel Garters the morning after we got home but I'm feeling loads better already so I'm at home finishing my IV's. Absolutely no complains! Lou is content :)


Thought I'd add some photos on here of our wee trip for those who haven't seen them. The rest are on my Facebook.
And I'll leave you all with these. Much love x


View from our window

The room. Not sure why they gave us 2 queen size beds right enough!

View at night :) so pretty. The moon looked really cool too

Me and the boy

Room service! This was my birthday dinner. Was actually so yummy

Monday, 28 March 2011

So excited I could jump up and down!

Afternoon there!


Well everything is just snazzy the now. I'm having a lazy day today since I've been running about like a headless turkey the past week. So I'm currently still in bed at 10 past 3 in the afternoon. Love it!! Well all except for the fact my tummy is pretty sore from my NIV... I always wake up with a belly full of air and looking like I'm like 5 months pregnant :| not really the look I was going for tbh!


Most of you will probably already know about my new other half :) I've known Rab since last September from a mates birthday night out. Couldn't be happier! He's just a wee sweetheart! Spoils me rotten and I honestly couldn't fault him. Well enough of the cheese I'll move on before you all start throwing up aha!


Here's a wee photo of us (excuse my cheeser and Rabs drunk lazy eye aha)

So my 19h is next Thursday and I actually don't think I've ever been so excited about a birthday since I was about 5! Rab's booked us in for 2 nights away in Edinburgererer at a lovely big luxury hotel right on the Grassmarket from the Wednesday till the Friday. I feel like a wee kid waiting on santa to drop down the chimney!! This is the first time I've stayed away from home overnight (except for hotel l'hopital) since I got put on oxygen over a year ago. So even just the thought of that freedom is pretty amazing. Then I've got a big night out planned with all my mates up in the ABC in town (hope you can all come) which should be fabby too! I'll get the snaps uploaded when I'm back and recovered from my awesome week :)

Well I'm off to grab some lunch and get a bit more excited about next week!
Much love! x

Tuesday, 8 March 2011

Merry Pancake Day

Well I think it's safe to say I deserve a slap on the wrist (or more like a boot up the arse) for neglecting my blogging duties for so long. Massive apologies and I promise to try harder to keep everyone updated from now on! Maybe...


Anyway! I suppose I can tell you's that the lack of entries means there hasn't been any disasters to let everyone know about. Life has been pretty great so far this year. Only had one hospital admission and, although I was really unwell when I got taken in (was collected by the green men and the big flashy blue lights!), I was back to my normal happy self within a few days then let home to finish my second week of IV's myself.


Obviously still no calls from Newcastle except the usual wee chat and request to stealz my bloodz. But I'm having fun with how things are at the moment to be honest. Getting out the house with mates every day, nights out and parties for a wee drink, eating loads (hello appetite!), getting my motivation back for photography and I've got pretty close to someone who just makes me feel amazing! He makes my tummy feel all fuzzy!! ;)


Well I'm off to go make a load of pancakes - since it's pancake Tuesday obviously - then eat that load of pancakes. Omnomnomnom! Enjoy your pancakes everyone!

x