My Transplant Journey - Part 2: The Op & Intensive Care

*If you missed Part 1 read it here* So I left off when I was transferred to Harefield Hospital from the Brompton on ECMO. I was sedated on the way there and vaguely remember waking up at Harefield but the next couple of days are wiped from my memory! I can remember a little bit of the day of my transplant and I remember a lot of my month long stay in the intensive care unit although mainly the bad bits but it's not something I like to dwell on. So I'm sorry if I'm a bit vague about things!

I'll just quickly explain a couple of things, firstly my transplant was classed as 'urgent' as I was on ECMO, was very unwell and was already at Harefield. Usually people receive 'the call' when they're at home and while I don't like that it put my family and friends through all that by being ill in a way I feel like things sometimes happen for a reason. I'm kind of glad I wasn't at home or something because I didn't have to go through 'false calls' and I was already at Harefield, which is one of the very best hospitals in the world. Secondly, while I was in the Brompton I picked up this bug called candida auris (which sounds like a Harry Potter spell to me!) on my skin, although I'm not sure if they found it before or just after my transplant. Before you're like 'Ew, you unclean germ!' we all have bugs on our skin that most of us aren't even aware of - it's only when you're unwell or 'vulnerable' that they can be a problem. Fingers crossed it hasn't caused me any problems as luckily it hasn't gone into my bloodstream but it meant everyone has to gown up when they treat me at hospital and I have to either stay in my room or go outside. I'm not allowed in the cafe for example or more importantly I'm not allowed to go to clinic either and have to be seen by doctors in an inpatient room on the transplant ward. I completely understand this as the bug is very resistant to treatment and it's not something I'd want to pass onto other patients but it's just a very frustrating thing to have. It doesn't affect me whatsoever at home or when I'm out in the 'public' as they say, but it does affect hospital life quite a lot. The doctors are hoping I'll be cleared of it or that it might even be gone already but I just thought I'd explain as again it's something that has made my transplant story perhaps a little different to others. Not that any two people have the same story anyway!

 Anyway I don't remember but I've been told I'd still been a bit distressed up until the evening before my transplant. My cousin said she'd been to see me and I was so calm, I don't remember that either and the next day is mainly a blur too. But I remember waking up in the morning and feeling so relaxed. It was quite early when the transplant coordinator came in so my family weren't with me and they explained that there might be a set of lungs for me providing all the tests came back ok. I remember being so chilled out about it, it's so difficult to explain but I felt like I was in this little bubble of safety and protection. I phoned my brother to tell him and he told me not that long ago that he was surprised at how calm I sounded! It's quite funny because I found these notes I'd written on my phone that day just last week, I'm not sure if I was trying to send a text or what.

'Duets' means to say 'first' I think!

I also wrote this, which is before I found out about the two units only of alcohol a day rule post transplant haha! I went so long without drinking any because it made me so out of breath and I didn't miss it so looks like I'll be sticking to mocktails after all ;-)

I think this means to say to tell my cousin I don't need mocktails now I will be able to breathe!

I can't remember the exact time but it was some time early afternoon, maybe lunch time, when they got the go ahead and I was taken off to theatre. I remember it so clearly being wheeled off to the anaesthetic room and everyone was just really nice. I wasn't scared, which is unusual because when I've had surgery in the past I've been shaking like a leaf, even if it was just something minor like my sinus op! I still just felt really safe and protected, maybe I was just a bit out of it or drugged up haha or was so ill I just felt like it was my time and this was something that I needed so I just didn't feel frightened. Or maybe it was something else that I don't think I'm quite ready to talk about on here, maybe I never will, but I think you can probably gather how emotional it makes me feel. Sorry to go a bit soppy on you there, I feel like you understand though! The op was a long one at about 13 hours, I believe my surgeon had to scrape part of my lungs out as they were so sticky with CF nastiness! 

My time in ICU is all a bit of a blur, I was there for just over a month and it wasn't the easiest time so again I think my brain has blocked a lot of it out. The nurses kept a diary for me about my time there so when I get that back I'll know exactly what happened so maybe I'll tell you then about it all but until then I'll try my best to explain.  

I think I was under sedation for nearly a week, I know they didn't close my chest up for a couple of days as there was bleeding so they wanted to be sure it had stopped or something. I think I was given blood during the op too, so not only did an organ donor save my life but a blood donor too - how amazing? It was all ok so they took me back to theatre and closed me up then I think I was woken up a couple of  days after. I was so out of it still but I had a tracheostomy (trachy) in to help me breathe, a lot of people expect someone to be able to breathe normally straight away after a lung transplant but most need some help with oxygen in the beginning. This one meant I couldn't talk so I remember trying to mouth things to people which was really difficult! I wasn't in pain as they were so on it with pain relief but I did feel quite uncomfortable as I had a clot in my neck which made my right arm feel really heavy. Oh, and I had ballooned. You're not allowed to laugh, ok?

6 days post op

Alrite, you can laugh a bit ;-) I know I crack up when I look at this pic! I don't even look like me! It was all fluid and it was so flipping gross, my skin was literally oozing - especially where they'd put needles in for blood tests and things. I felt like some creature from a swamp haha!They weighed me and I was about 75kg, to put that into perspective I was maybe just under 50kg beforehand. That's a whole lot of fluid I'd gained, so not the nicest time I have to admit! My whole time in ICU wasn't that great to be honest, the nurses and doctors and my family were amazing but I was a mess. I had a bit of delirium in ICU which is common, as well as a lot of anxiety.

I can't remember what was real and what I hallucinated or dreamt, so when I try to think things over it gets so confusing and I feel myself panicking a little bit. For example a few times I thought I'd escaped Harefield (God knows how) and was so worried about how I'd get back. Because everyone around me were wearing those blue gowns in my head they were part of a cult and I thought I wasn't in hospital any more because the cult had taken me on a train to India! So I thought I had no medicines and was going to die, I was so afraid. I also had a big photo wall with pictures of my friends and family and lots of baby Florrie and they were all 'talking' to me like the photos in Harry Potter which was really weird. I remember telling my mum and stepdad to eff off, THE SHAME. Luckily they knew I'd gone a bit nuts in ICU so didn't take too much offence haha but I still feel awful about it. I also accused my nurse of  being fake and demanded to see her qualifications, I can't believe I did that! I said the same about my physio too, I feel so embarrassed. I did say sorry to them when I was more with it but they knew it was all the drugs and the ICU madness that made me stupid like that! Apparently it's very common and normal to have hallucinations and anxiety in ICU. 

I remember the doctors coming in to do bronchoscopies which is when they put a camera down your throat and also suction out any nastiness. I got to actually see my new lungs which was very cool, I even saw the stitches where they'd been stitched in! I had lots of x-rays, ct scans and just constant tests and monitoring, plus loads of medication. I couldn't swallow anything because of the trachy, not even water, so all my meds were put down my feeding tube in my stomach. Physio was something I found so difficult, because I was so heavy I had real difficulty moving plus I was so weak anyway from EMCO, being still for so long and just from being so unwell beforehand. It is crazy how quickly your brain forgets how to use muscles, my muscles had just wasted basically and I was so skinny once the fluid went - I lost something like 30kg which is madness. In the beginning I could literally barely move a finger! I needed so much help to do every little thing, it was quite scary not being able to move plus I still couldn't speak because of the trachy. But the fluid did soon go down and I started getting a bit of movement back, starting with being able to use my phone (naturally.)

I don't know what I was afraid of but I used to have mini panic attacks just before my physio session in the afternoons. I think we started off small trying to get my hands and feet moving then once the fluid had come down a bit they helped me sit on the edge of the bed for the first few sessions. Then we tried a machine called the 'Arjo' to help me stand up and I was so afraid of it haha! Here's a pic, I did not look as happy as this man. I'm not sure when exactly I started using a zimmer frame to walk a little around the room (when I get my diary back I'll know more!) but I was definitely feeling stronger despite still being very weak, having lots of lines in and needing oxygen still. There were tiny baby steps each day but they felt like a massive victory. My trachy got changed to one with a speaking valve so I finally could speak, eat and drink, then even better still they took it out completely! I was on the up! (Again these aren't my most beautiful photos, I looked rough as hell in hospital but I had more important things to concentrate on haha!)

Speaking valve in!

My first ice lolly haha it was like heaven!

Buh-bye trachy! This was outside when I was having 'Sunshine Therapy'. LOVE how they call it that. This is when you go out for a bit of fresh air, I managed to get out a few times! 

And then we had 'the blip', the same night that last photo was taken in fact. More on that in my next post!

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