Thursday, 14 June 2012
Well here is the long-awaited update you've all patiently been waiting for! It would have been sooner but I've just had no concentration or been too busy with all my new routine or with all my awesome visitors :)
At the moment I'm confined to my room cause I've got a wee bit of rejection going on (which is totally normal at this stage so nothing to worry about!) so I thought I'd do something constructive with my time while I can be bothered.
Obviously you all know I've had my life saving double-lung transplant, but what most of you don't know is what happened in the week before I received the best gift anyone could ever dream of getting...
It started out with me feeling totally pants and being rushed up to Garters by the wee men in blue at about 6am. Same as usual, despite my NIV being at its highest settings, my Co2 was pretty high again. Dosing throughout the day it got to about 10pm and one of the nurses mentioned the possibility of lungs being available to Rab but I was now in a bit of a confused/sleepy state as a result of the carbon dioxide levels in my blood so I never even heard what was going on. Then in came my doctor in his jeans and t-shirt having been called in from home over the situation and everything started moving pretty quickly! Rab ran home to get the transplant bag, his things and the mother of course (can't be leaving her behind!). So off I go bundled up in the back of a bumpy ambulance all the way down to Newcastle at 11.30pm.
After falling asleep for a couple of hours and waking up feeling dramatically worse than what I did when we set off, I noticed we'd stopped. We were lost in Newcastle. Whole lot of good that is! Then the paramedic announced that when I was sleeping my oxygen levels were sitting around the 65 mark so she'd turned my oxygen up from 6 to 15 litres!! Huge mistake for someone who retains carbon dioxide!! So now I was so unwell that they were being instructed to take me straight to ICU (when we finally found the Freeman).
Now this is where things get pretty hazy from here on so I'll try my best but really all I'm doing is repeating what my mum, Rab and the doctors and nurses have told me!
After driving in circles and stopping to ask randoms for directions (bet that looked good, an ambulance with their lights and sirens on stopping to ask people in the street for directions to the hospital...) they found the Freeman and I was rushed up to the Intensive Care Unit where I was met by Rab and my mummy (they made it down before us since Rab at least has the decency to use a Satnav) and put into a single room. We started to wait for news about the lungs.
A number of hours later on the Friday morning we were told that the lungs weren't good enough for transplant. This was my 3rd false alarm. I genuinely didn't feel upset, just slightly disappointed that we'd come so close again only to be told that nothing would be happening. So arrangements started being made to ship me off back up to Glasgow. But they had to book the ambulance at least 24 hours in advance to take me back to Gartnavel so I had another night ahead of me in ICU. However within those 24 hours I began to deteriorate more and from this point up until I woke up after my transplant, I really honestly don't remember much at all. My oxygen sats had dipped so they were sitting between 54 and 67 (normal should be between 95-100), and my Co2 had gone up to 14 (normal should be around 3-4 I think) and that's where the numbers stayed. So it was decided that I was too unwell to be transfered back to Glasgow and I was to stay down here until either lungs became available or they had stabilised me to the point where I could safely travel back to Scotland.
Over the weekend and for the next 5 days I slipped in and out of consciousness while Rab played 'let's try steal the morphine lolly off Lou without waking her up' when I kept falling asleep with my Actiq lolly in my mouth, it would fall out and get stuck on my chest, arm, hair or wherever else it decided to land, but as soon as Rab reached over to rescue said lolly, I would instantly wake up claiming I wasn't sleeping and demanding I have my lolly back. Only to fall asleep again seconds later. They had put me on a different ventilator to my NIV to try help bring my Co2 levels down but it never worked as well as everyone had hoped and so like I said, I spent from Friday until Tuesday gradually deteriorating while my mum and Rab watched on completely helpless. All They could do was keep you all updated through Facebook, calls and texts which I'm so thankful Rab kept you all in the loop as best he could over my FB.
By Tuesday at around 12pm, I had been moved out my single room and into the main bed bay. Oh my god am I glad I didn't know what the hell was going on at this point because that is a scary place. All these really sick people jammed up beside each other either totally sedated with breathing tubes, dialysis and every kind of monitoring and support equipment you can imagine, in plain view for anyone to see. I had deteriorated so much by this point that the decision was made to put me on the NovaLung. For anyone who never got round to reading my blog in September when I was moved to ICU in the Western Infirmary in Glasgow with the intention of being put on NovaLung (however I improved on my own and ended up not needing it) I'll give a brief explanation as to what this strange thing is.
Basically it's like dialysis but to remove the toxic Carbon Dioxide gases in your blood. Two tubes are inserted into your main artery in the right side of your groin (nice place huh?). One of these tubes takes the blood from your artery and takes it into the NovaLung which is a small contraption which sat between my legs (I was imagining a huge big complex machine with loads of buttons and lights) which then 'cleaned' my blood of all the excess Co2 and then fed it back into my body through the other tube inserted in my groin. Having this put in was definitely the very last thing I remember. Being awake while they put it in was honestly the most painful and traumatising thing I've ever been put through and even once it was in place, I was in so much discomfort I can't even begin to describe it. Anyone who knows me, knows I never panic, but I just couldn't calm down. I was desperate to sit up but it was important that I stayed lying completely flat (which just made me choke) and lay completely still because any movement at all, even the slightest, could dislodge the NovaLung and with it being in a main artery, I'd have very likely bled to death or something equally exciting...
After struggling in pain and drifting in and out of consciousness for the day, they decided I was suffering too much and so I was sedated on Tuesday evening. My mum told me later on that when she was watching me struggling like that, she'd never felt so helpless in all her life and that if it had gone on any longer, she was seriously considering telling the doctors to remove the device, make me comfortable, and just let me die in peace. I'm so glad she stayed strong and held out that little bit longer because soon I would be given a new chance at life and I quote my surgeon "She was truly brought back from death" and apparently he doesn't mince his words or say things like that often! But it wasn't over just yet...
Still I became more unwell and deteriorated more quickly, getting closer to those big pearly gates every second. Still I was sedated and still the NovaLung didn't seem to be working the way everyone had hoped. So at around midnight on Tuesday night they tried to find access forECMO, which to simplify things down, is basically where they insert a tube into the artery in
your neck and another either in your chest or groin, and attach you to a piece of equipment which
provides support to your lungs and/or heart when these organs can no longer function on their
own. Like life support really. However when you are put on ECMO, you very rarely come off it
again unless given a successful transplant. So to buy me some extra time the surgeons tried to
put me on ECMO but after a lot of trying, cutting up my neck (I now have a beautifully hideous
scar right up the right side of my neck) and trying some more, they realised that finding access
was impossible and that all they could do was leave me on the NovaLung and hope for a miracle.
That night after my mum and Rab had gone back to the flats they were provided with while we
were down here, my mum later told me that she couldn't sleep for worrying about me. So at
around 5am on the Wednesday morning, she gave the ICU a call just to see how I was. And as if
by chance, when she spoke to the nurse, they mentioned something about the possibility of lungs.
It's strange how sometimes you just have a feeling and you sense these things in a way. Wasting
no time, she phoned Rab to wake him up and within 20 minutes they were both at my bedside
waiting to hear of any more news. I was still sedated, on the NovaLung and struggling so I had no
idea what was going on around me or of the exciting news that Rab and my mum were about to
Sunday, 13 May 2012
Well I've decided to finally get my arse in gear and update this. Wayhey!! Only taken me 4 months! I've had so many people asking me to post a wee update and I can only apologise to everyone (and there were a lot of you!) that I promised to do so but never did. I swear I had every intention of updating it but I've had literally zero motivation to do much these past few months, especially write in this. Anyhoo I'm here now, so once I'm started it's pretty easy to carry on :)
Most of you all pretty much know what I've been up to since the new year. Mainly because it really isn't much at all! Most of it has been spent in the hospital (nothing new there). I've been on and off IV's roughly every 2 weeks, had a couple of spells where I was a bit more unwell than 'normal', but managed to do some of the courses of IV's at home when I've been feeling up to it.
Also had another false alarm back in February which never came to much. They called me in the middle of the night and I was in hospital at the time but was feeling reasonably well by this point. Anyway, it never got any further than a few phone calls over the next hour between the transplant co-ordinators, the doctor up here that night, the folk at the donors end, and me obviously. Turns out my infection levels were still a bit high to risk going through with it and some blood tests on the donor came back positive for Hepatitis B. Then later on when they removed the organs they found that the lungs were pretty dodgy looking. Bad lungs from a 50-year old male smoker with Hep B? Think I'll hold out a wee bit longer thanks!
So because of the lack of progression in terms of these new lungs appearing, I've become pretty bloody fed up! Which is another reason I've not written in here, cause I don't want to put you all in a downer with all my depressing moaning. But now I've started you'll just need to deal with it!
It's only the past few months that it's really started to bother me. Probably cause before I had always clung onto whatever wee bits of independence I still had, but all those have gradually disappeared and I've realised how totally reliant I am on Rab and other people. I know everyone keeps telling me they don't mind helping me but it's not about that, it's the fact that I just want to be able to do these things myself. Things like getting showered or drying my hair or even just reaching something across the room because my NIV wont stretch far enough. Then there's things that I've not done in so long that people don't think about not being able to do but for me is either impossible or such a monumental struggle that there's just no point in trying cause I get too frustrated at all the planning that needs to be done to do it.
And I think now it's started to get me so fed up I just don't have the motivation to do the things that have been keeping me occupied like watching the telly, DVDs, reading, texting people. I even find now that most days I don't want to see or speak to anyone. It's nothing personal I swear! It's just that I think I'd rather sleep until the phone rings to say "get ready, we've got you some sexy new lungs!". But I really don't know when that will be. Or now I'm starting to think even if that'll be...
Just one last thing before I go. Something I don't think some people quite understand and I find myself repeating constantly. I can't come to gigs, birthdays, nights out, parties etc. I'm on this ventilator 24 hours a day and I can't go outside with it on. Which means I can't leave my house at all. And this won't change until I get my transplant, which I don't know when I'm getting either. I don't mean for it to sound short or snappy but I'm not sure how else to say it any more for everyone to understand. I guess being cooped up in the house/hospital for so long has turned me into a moody wee bitch eh? ;)
Well that's all for now I suppose. Let's hope I don't disappear from the bloggy world for another 4 months
Saturday, 7 January 2012
So first I should say happy New Year to you all :) and my apologies for leaving it so long before updating this. It's been busy busy busy over Christmas and New Year with loads of people visiting, eating too much, sleeping too much, watching loads of movies and generally just being a lazy bum!
As most of you all know now I got my first call on Thursday night. Of course it had to come on the one day of the week Rab is out of the house at basketball training didn't it? Just really lucky he was already on his way home so I got to see him before I got carted off down to the Freeman hospital in Newcastle in the back of THE most bumpy ambulance in the west of Scotland. Rab and my mammy followed us down in his car and even managed to beat us cause we got lost. Whole lotta good that is; an ambulance that doesn't know where it's going! I'm actually pretty gutted I never got flown down in a helemacopterer :( I was looking forward to a wee shot in it too, but we got there eventually by about half 1 in the morning.
Went through all the usual things you'd expect; bloods taken, x-ray, waiting, a bath with some surgical body wash, pop on a sexy hospital gown, remove all your jewellery, wait a bit more, nil by mouth, even more waiting. All the while the transplant co-ordinator was popping in and out keeping us updated on the whereabouts of the lungs etc and when to expect to be taken down to theater. Everyone was expecting to have had a yes or no by about half 5 but it came and went with no news and that was when we got told about 7am it was a no-go because the lungs weren't looking as healthy as they'd hoped.
I can honestly say I felt neither up nor down. I really expected to feel more disappointed but maybe it's just because we've been through so much these past few months that nothing seems to upset me any more. I've become so used to plodding along in my wee flat with Rab and having people pop in and out for visits that it's almost as if I can't imagine things being any different. It's been so long since I've been out to do normal things like go to the shops or the cinema, visit mates, go for a meal or even just a drive that I've forgotten what being normal is like. I guess I can't imagine getting my transplant because I've never been through anything even remotely similar to it in my life.
What we should never forget is the person who lost their life and donated their self literally to give someone else a longer life. My thoughts are with this persons family at this time of grieving but I admire the strength they had at that time to come together and allow the organs to be donated.
I hope all of you who are reading this are already organ donors because I really believe it's one of the greatest gifts you could ever give. Spread the word too and even if only one more person signs up, that's at least one more life that could be saved.
Also want to thank everyone for their lovely texts, comments and messages on facebook. It makes me smile seeing how many people who are sending their support and I can't describe how much of a difference it makes in keeping me fighting on till I get that call that's going to change my life :)
Until then I've got my trusty NooNoo to keep my wee lungs puffing away!
Much love to you all :) x