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!!