Thursday, 15 September 2016

My Transplant Journey - Part 1: How Quickly Things Change!



Hello! So I haven't blogged for a little while but I do have a very good excuse - I got my beautiful new lungs! I've been home for a week, I'm two months post transplant and I'm feeling very, very lucky and grateful to be here. Can you believe I'm sitting here right now oxygen free? Very different to when we last spoke! It was all such a whirlwind, I just went downhill so quickly and was extremely lucky to get my transplant in time. So I thought I'd fill you in with what happened but you'll have to bear with me because this will probably be a long 'un and also I either don't remember or have muddled memories of what happened. I'll start from the beginning even though most of it is completely gone from my memory. Like I have zero recollection of posting my last two posts, in the outfit pic one I mention being on the high dependency unit and I don't remember any of HDU at all! I'll warn you now this post has pics of me in hospital attached to wires and things (and a few ugly selfies but that's just my face I'm afraid) so if you feel squeamish about that kind of thing maybe scroll past those quickly!

So I had just over a week at home before I got really ill again (I had to miss my cousin's 21st, major boos!) It started with a stomach ache but by Sunday 26th June it was much worse and I was struggling to breathe. So for the first time ever we got an ambulance to come and I went to the A&E at Lewisham Hospital, which is the hospital where I have all my CF clinics and where my CF team are. I was there for a while with my mum and stepdad then my older brother came while they went to grab a sandwich, it was then that the doctor came in and decided to literally say, to my brother's delight and my pure embarrassment 'Basically, you're full of shit.' Hahaha! Sorry for that lovely image but that's one of the joys of CF, my friends. But it puts into context the shock of what was to come because as unpleasant as that is that wasn't too serious and we thought it was quite fixable.

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Feeling like poop (lololol) in A&E

So I spent the night on the Coronary Care Unit as there were no beds on my usual Mulberry Ward and the next morning I watched Finding Dory on Facebook as someone naughty had uploaded it (ironically I can't remember anything that happened in the film! I am Dory.) It's after this that all memories of Lewisham are blank. My mum wrote down a little of what happened in a diary but stopped as it was all too upsetting. I did have a quick read but didn't like it so put that diary away as I feel like my brain made me forget it all for a reason if that makes any sense. I'm the lucky one as I don't remember a thing but my poor family and friends do, it was a real scary time for them. During the week I was in the Intensive Care Unit on an NIV (Non-Invasive Ventilation) machine, I don't remember any of this but did find these selfies on my phone! I'm told I did not like these masks at all, which doesn't surprise me.

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cystic fibrosis niv, cystic fibrosis lung transplant, cystic fibrosis ecmo, ecmo lung transplant

Not very attractive but there are worse selfies to show you so you can look forward to that haha! The support on the machines was going up but my oxygen sats were still going down and by the following Sunday there was nothing more my lovely CF team could do despite them working so hard and trying everything. So a team from the Royal Brompton came to fit me on a machine called ECMO. To put it in simple terms, this is a machine that took over the job of my lungs as they just weren't working at all and it's what kept me alive. It basically puts oxygen back into the blood when cO2 levels are too high so your blood goes out of your body via a tube and then back in again. At first they put the line in my neck but when I was transferred to the Royal Brompton Hospital (on that same Sunday) they changed it and put it in my groin as when it was in my neck it was putting too much strain on my heart. I think I was supposed to go to Harefield Hospital straight away but there were no beds available yet.

I remember nothing of ECMO either, even though I do remember bits and bobs of the Brompton. I remember sending my stepdad and brother out on some kind of wild goose chase find a Hawaiian pizza and when they eventually tracked one down I only ate one slice haha. I remember who came to visit but not what we spoke about. I remember having an X-Ray and most of the lovely nurses and doctors who worked there. One of the Spanish nurses really stood out because her saying 'I am the freak of cleans!' stuck in my head for some reason haha! I also remember being really unwell and having lots of panic attacks. But having these big ECMO tubes attached to my legs is completely erased from my memory and it wasn't that long ago that my mum showed me this photo of the ECMO machine when it was like seeing it for the first time. I think my brain must have wiped it out to protect myself, which is a good thing. Amazing too! I think these photos were taken in Harefield Hospital's intensive care unit, where I was put under sedation and transferred to on the 7th July. I remember the morning I went I had a panic attack and there was this really nice doctor who held my hand and talked to me when he really didn't have to and I'll never forget how kind he was!

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The ECMO machine. I can't believe how clever doctors are, how do you even work something like that?!

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Under sedation 

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ECMO tubes on my leg (I don't remember these at all!) These meant I wasn't allowed to move my legs but apparently I still did which set the machine off beeping!

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Not under sedation!


I wasn't sure whether to put these photos up because 1) they make me feel a bit weird looking at them, I'm like 'Is that really me?' and 2) I suppose they're just quite personal! But I feel like it's important to share them to raise awareness, it's cystic fibrosis that put me in this state - I'm not the first person it's done it too and I'm not the last either but I hope one day no one with CF will have to go through this.

I have scars and wounds leftover now from the ECMO but had I not been told I'd have no idea how they got there. It's madness to me now to think how unwell I got when in my mind all I had was a bad stomach ache. There's no way I'd have guessed all of this would have happened, I mean obviously I was ill because I was on the transplant list for new lungs and I needed oxygen 24/7. But like the Thursday before the weekend I went to A&E I was at a wedding dancing! I hate knowing how upset everyone else was during this scary time, I know I would hate to see any of them go through all of this. I think they were all very brave! And I know I'm so lucky to have so many people that supported me, they were all there at Lewisham, the Brompton and Harefield even when I didn't even know it. I think they took over the family rooms haha!

I don't really remember anything of Harefield until the day of my transplant, which I'll go into next time as I think I've rambled on long enough for today. Will probably speak to ya Sunday!





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