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!!

4 comments (+add yours?)

Auntie morag in HK said...

Beautifully written from the heart . Cant wait to see you both on your wedding day with your eyes sparkling to match your ring .....wont be long now . you have a diamond on your finger and one at your side ..... love you both . Auntie Morag xx

Lynne said...

Louise, congratulations and you are an inspiration, we've got everything crossed that you get the big phone call.

Lynne (Rab's mums cousin)xx

Becca Pollock said...

Aww Louise you're such a trooper, a real inspiration :)

Congrats on the engagement you deserve to be happy so much and I pray and pray that you get that call!

Ps : I was reading this when I remembered that time in primary when we were playing the flute and 'mrs barron' made us see who could hold a note the longest- it was you!!!! You've never let anything get in the way of your plans and I admire you so much for it.

Hope the next call is for you xo

Kirstie Mulheron said...

I love the way you write, you have such a way with words, and I love the fact that you keep us all a part of your unbelievable journey. I don't know anyone else who could have been through what you have and still have a smile that can light up a room and a wonderful outlook on life, you are such an amazing girl Lou!

I'm so glad that your wee lungs are still fighting for you! And glad that you have found your rock :) It's so lovely to hear about.
I hope so much that you get the call you deserve, everyone needs a wee bit of sunshine like you in their lives! Can't wait for the day to hear the good news (hopefully it isn't a long wait), but in the meantime keep fighting and spreading your contagious love! xx

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