The 22nd of September, 2018.
On this day, last year, I went into A+E with the pain that means my liver is in trouble. I haven't written about that time because a) I was not in a place to document it then and b) I am still not fully aware of what went on. I know that the day before, I felt fine, but I woke up knowing what had to happen. I don't remember this, but apparently I didn't want to go to hospital. I suppose I thought I knew what would come next, but I was so wrong. I remember sitting in the waiting room in my pyjamas, dressing gown and slippers, squirming in my wheelchair, trying to find some way to ease the agony, and scanning the room to see who might be able to distract me by being interesting. I could only see one other woman who looked as unwell as me, and I immediately decided nobody else actually needed to be there. One man near me started watching videos on his phone with the sound up, and I just looked at him with fury and said "DUDE" in such a tone that his girlfriend made him stop. Unacceptable.
I was about to get out of the chair and start crawling around on the floor because I couldn't cope with the pain, so Mommy went up to the desk to ask when I would be seen because I was deteriorating, and they called me through into (what I now know to be) majors. As soon as the nurse took us into a cubicle, I saw a trolley-type-bed and climbed onto it like an animal, but she made me get off because this was just to triage me. I wailed. I know at this point I was still able to converse with people - I was telling them that I had cholangitis, I needed a specific antibiotic, but nobody was listening to me. I got moved into a different cubicle, where I was able to lie on the bed, and a doctor came to take some blood from me. As soon as I sat up to let him, I threw up, and could tell that my digestive system wasn't working properly, because it had been a few days since we'd had kale. I got put on a paracetamol drip, which helped for a while, and I sent out a tweet about vomiting in A+E, after which everything went dark.
Everything for the next four or five days is pieced together from tiny flashbacks, and what I have been told occurred. There are things I know, and things I remember. I know I went to the liver ward and got put on a morphine PCA. Then my parents came to visit me to find my bed surrounded by doctors because my blood pressure had plummeted because I had become over-opiated, and I had to be given naloxone. That is what they give addicts who've overdosed and need to have the drug withdrawn from their systems immediately and I can tell you I do remember that. I don't know if the process itself is physically painful, or if the drugs being withdrawn makes you suddenly feel all the pain it was shielding you from. Either way, it feels like being ripped apart from within. My blood pressure still wouldn't come back up, and that is when I was taken to ICU. I have no memory of that. I have vague hints of what went over the next few days from interactions I had - doctors asking me questions like "Do you know where you are? Do you know what day it is?" and I knew why they were asking, but I couldn't get the answers right. I was still able to tell them a CT scan was not an option (when they thought for some reason I might have a PE) because I'm allergic to CT contrast. I remember having what I now know was a panic attack, feeling like I couldn't breathe without hydrated oxygen, despite my sats being 100 and being on well over what I clinically needed. Christine asking me what the passnumber to my phone was, and me asking if that was because they thought I might die. She had come home for that reason too. And there was pain, so much pain, and I specifically remember being curled up on my bed, pleading with the doctors to either give me enough drugs to kill myself, let my mother bring me enough drugs to kill myself, or let me go home so I could kill myself. I could not see myself getting better, could not see the pain stopping, and I just wanted it to be over. I think it was after this that Mommy convinced the doctors to give me a Zopiclone. Get me to sleep now (I hadn't been to sleep since I arrived in hospital because of the adrenalin and pain, and it had been at least four days) and my actual sleep pattern could be worked out later with midazolam.
When I woke, I started to actually become more lucid. I realised that I was in a short gown, attached to an ECG monitor constantly, was catheterised, and had a femoral line in. I've had one of those put in while awake before, and you need to stay very still. How they got me to cooperate, I will never know. I'm not allowed sedation because of my lungs. I was on dialysis. I managed to find the capacity to type a short message to the social media world to let them know I was still alive, but the effort to do so and to spell it correctly was phenomenal. I might have been awake, but my brain wasn't up to normal function. I remember trying to tell someone that I wanted a Calippo, but the word that was coming out was "mouthwash". Christine was the only one to be able to work out what I meant. I was eating miniscule amounts - I remember the nurses putting my tablets into spoonfuls of the hospital ice cream to get me to eat something and take my medication at the same time. Taking tablets was so tiring. And I have a lot of them. They had to get to try to start moving, and a physio came. We discovered that I could just about stand, but I didn't have the abdominal strength to straighten my back, or the thigh strength to lift a foot off the ground without falling down. I think once the pain and the infection were under control, I could want to get better. Once I had slept, I could consider the possibility of recovery. I started living the same days and nights as the rest of the world - it's difficult when you are in a room with no windows and you can't see a clock so you have no concept of time. Each day I took a step closer to getting out of ICU, figuratively and literally. My kidney function seemed to have improved enough for me to come off dialysis, but I had to prove to the renal doctors that I could drink enough to stay that way. Finally, after ten days in there, I was moved back up to the liver ward.
I spent another week in there, recovering, or recovering enough to be able to go home. It took me months to fully recover. I started eating three meals a day again, or at least trying to eat something three times a day. I had to, because I had lost a stone in my time in ICU, which I couldn't really afford. I got the catheter removed, which was a glorious day because it meant I didn't have to take my bag of pee to the bathroom when I went to brush my teeth, or attach it to the physio's pocket as she helped me practise walking around the bed. I was using the shower chair to stabilise me when I walked to and from the bathroom, because I didn't have the core strength to stay upright yet, but one day a nurse saw me come back to my chair with it and asked if I would like a zimmer frame, because I was grey, the effort having drained me of all colour. I was only too happy to have one, because it's a lot more stabilising than a rolling chair, and could help me push myself up.
The doctors started letting me go home in the afternoons, in between medication times. One evening, I'd returned, Christine and Mommy had gone home, and I sat watching the first episode of the new Doctor Who on my iPad. In the scene of Grace's death, I started crying and just couldn't stop. I suddenly realised that just over a week ago, I could have died, without any idea of what was happening. No consciousness, no ability to say goodbye, no meaningful exchanges with my family, no way to set my affairs in order. For the first time in eleven years, I was actually scared. I'd only ever been sad about my death before, because of what I would miss, and because of what my family would go through. I'd always pictured my death as being something I'd have some degree of control over, or at least be aware of, and this made me realise that I could go into hospital one day and if I was ill enough, spiral down too quickly to know about it. And I was scared that my brain could be so confused that it asked doctors to kill me, that I would have killed myself, had I not had advocates in the forms of my family. I felt so sorry, so sorry that I could have just disappeared like that.
After a week on the liver ward, and what doctors called my "miraculous recovery", I was discharged. We weren't sure how I was going to get upstairs to my bed, but I was determined that I would. I used what is known as the "bum-shuffle" method. The first weekend, I had a minor breakdown, because I was so scared. So scared that the infection might come back again and I'd end up back in the same place, so we made a point in my first liver clinic appointment (very soon after my discharge) to make a plan with James as to what we would do if it came back. We are to ring ahead to the liver reg on call to let them know we are coming to A+E, and we have a letter outlining what I have and what drugs they absolutely must give me. That's what is most important, what should stop me ending up in ICU again. I understand now why people have PTSD about that place. I never, ever want to go back there.
I don't remember taking this, but this is my dialysis machine. It cleaned my blood every night.
