As you know, I came up to Edinburgh to spend Christmas with my mum and step-dad. We had a lovely Christmas day together with delicious food (thank you Mum), quiet times, lots of wonderful presents, jolliness, crackers, relaxation, Christmas tree lights, carols on the CD player and record player (yes, a record player!), and even a few on the piano from Mum. It was lovely. Very relaxed. Boxing day was equally gentle, with my friend O coming round for tea and cake in the afternoon, and it was all very lovely. And then I started to feel a bit itchy scratchy in the throat and had a little cough beginning, but it wasn't too bad so I got on with it and thought it'd sort itself out soon enough. Monday came and I was feeling a little off colour, but nothing very precise - coughing more, a little snuffly, sneezing a bit, a tad under the weather - and I thought I was probably okay for going to the theatre to see 'The Secret Garden'. I'm glad I did. It was fantastic, and the only sadness was that there weren't more in audience.
Monday night was a bad night. I coughed and I spluttered, and I wheezed, and several times I considered waking Mum and J to suggest that I maybe get checked out at A&E. I didn't though, and eventually I got a very small amount of sleep, but I felt rubbish when I got up and soon decided that I should probably call NHS24 for some advice as my breathing was getting worse and my parents' GP surgery was closed for the Christmas break. It took a while to get through, but I did eventually get to speak to someone who went through a whole list of questions about my symptoms, some of which were fairly obvious, like the wheeze and shortness of breath. Then he said that he'd ask me some other standard questions, and question one was, 'Are you conscious and breathing?' !!!! Um, yes, you've been talking to me for the past 5 minutes, and although I've been struggling somewhat, I have been talking back to you, which kind of suggests that I am both conscious and breathing in a fashion. Question two: 'Are you short of breath?' !!! Er yes, the give away to that ought to have been the fact that I couldn't speak in full sentences and was wheezing down the phone. He seemed alarmingly surprised when I said that I was indeed short of breath. He put me straight through to a nurse, who was much more sensible, immediately said that she could hear that I wasn't too well and organised an urgent appointment for me with the doctor at the out of hours service at the Royal Infirmary at Edinburgh (RIE) for 25 minutes time, although she kept saying that if things got any worse then we were to call an ambulance. We didn't call an ambulance, but we did make our way straight to the OOH appointment, where I was seen very quickly. I wasn't even in the room before I was being told that there was little they could do for me and they were going to scribble a quick letter before sending me up the corridor to A&E. Soon enough I was attached to high-flow oxygen, a porter was called and a nurse was escorting me in a wheelchair to A&E, whereupon I found myself being rushed into resus under the care of the A&E consultant. I was going downhill, and it seemed to be progressing relatively rapidly. The A&E consultant didn't leave my side, the respiratory team were called, the ITU team were called, I was swabbed for swine flu just in case, although nobody expected I'd have it as I was vaccinated back in October, but it was routine procedure now for all asthmatics presenting at A&E to be swabbed.
I was scooped up and whizzed along to HDU as I wasn't getting any better. In fact I was getting a little worse. And then I got much worse, and a couple of hours later my mum was being called back to the hospital as I was being moved into ITU where they were fully expecting to ventilate me. To be honest I'm not entirely sure why they didn't, and I was so exhausted that I would almost have been thankful for them to do so, even though I knew there'd be no guarantee that I'd get off the vent if I went on it. I fought on. I started to wretch terribly, although nothing came up as I'd hardly eaten for 48 hours, but still, uncontrolled wretching is not fun and it's even less fun when you can't breathe to start with. And then my temperature rocketed up to 40C and I still couldn't breathe, and the aminophylline was taking a heck of a long time to do anything. And then my swab results came back and it transpired that I did indeed have swine flu despite the vaccination, so I was whisked into isolation where anyone who entered the room had to cover themselves in an armour of apron, gloves and face-mask, and despite it being intensive care, they all had to leave the room when I was on a nebuliser because of the risk of aerosol particles of the virus being blasted through their armour. Instead they watched me through the window until the nebuliser was finished and then came back into the room to do all the intensive care bits that they do. And oh my god, then the pain. Not just aches, but fire. My muscles were on fire. I was in tears, which again didn't help the breathing, but I couldn't help myself, and through the fire was intense ache. My toes ached. My little fingers ached. My skull ached. The roof of my mouth ached. I was still wretching. My temp was still sky-high. My breathing was rubbish. I thought I was going to die. I didn't. Slowly, ever so slowly, my breathing eased just a little, and then a little bit more, and then they did an aminophylline level, which came back showing that I was at the very top end of the therapeutic range, beyond which it is toxic. They had to reduce the dose they were giving me. I appeared to be doing okay so after two nights in ITU I was moved up to the respiratory ward, whereupon I rapidly declined, and within a matter of hours my aminophylline levels had zipped right down to the very bottom of the therapeutic range, and the drug was basically doing nothing for me any more. The Registrar did an Arterial Blood Gas (ABG) and upped the aminophylline infusion again. The gas came back showing a pO2 of 9.7 so I was given more oxygen. Soon afterwards another ABG was done and my pO2 was at 9.2, with my pCO2 rising to 4.9 (still within normal limits, but not good in asthmatics with a falling pO2, and the fact that it was rising was concern enough). The doc was trying to give the aminophylline a chance to get back up to more therapeutic levels, but it was taking too long and the next ABG showed my pO2 had gone down to 8.7 and my pCO2 was 5.2. The Reg said I was in respiratory failure and that I would be going back down to HDU. I was scared. It was the middle of the night and I was on my own so I texted some friends and asked them to pray for me whenever they picked up my message. Several texted straight back saying they were praying for me right away, telling me they were with me in spirit and holding my hand even though they were over 100 miles away. I felt their love. I was sure I was going to die, and I practically resigned myself to it. I kept feeling the fight slip from me. I was exhausted. I hadn't slept in five nights and all that time I'd been desperate for breath. I was ready to give up. My family and my friends weren't ready for me to give up. I prayed for God to do whatever was in his plan for me, and there began an almost physical battle to keep the word 'fight' going round in my head. I wanted to fight, but I also didn't want to fight. I had to fight. I fought. Another two days and nights of no sleep; complete exhaustion; and a week in critical care. New Year's Eve spent gasping for breath and clinging to life by a whisper. A hug from a nurse. A taste of shloer. A tear.
In the end I was well enough to leave HDU again and come back to the respiratory ward. Still wheezing. Still short of breath. Utterly exhausted. Desperate for sleep, for critical care is one of the noisiest places in a hospital, and lack of breathing isn't condusive to rest. Put in a room with three other patients with swine flu. All of us behind a closed door through which only masked, gloved, and gowned staff enter, and visitors come at their own risk. Visitors do come though - my mum, my step-dad, some wonderful friends I've met through the Open University, along with a friend travelling back to Aberdeen from Newcastle.
I sleep. I feel overwhelmed by all that has happened. I feel so very loved by my family and friends - those who are here and those who hold my hand at a distance. I am impressed by the care I have received throughout my travels around the hospital, and I know that I am safe in their hands, which is so important as it means I can relax and get on with trying to get better rather than worry about what they may or may not do. The staff have all been wonderful. The medical care has been fantastic. They have, I'm told, been in touch with Dr H to let him know what's been happening and say they'll probably call him again on Monday to give a progress report. They've asked me all the way along the line what I need, what works for me. They tell me to tell them what I need as I know my disease better than they do.
The water retention is bad again, which was a problem when I was down in HDU and they started to dry me out while I was there because they were concerned that my lungs were beginning to sound wet and they worried about me developing full-blown ARDS or SARS. My lungs are still groaning, but the main water retention problem is in the rest of my body now, which is very uncomfortable and sore so they're giving me diuretics twice a day to try to help sort it out. I'm not getting very far with it as yet, but I'm still attached to the aminophylline infusion at full dose and I can't move far off the bed so my mobility is very limited and that's one of the natural things that's most likely to help. The plan is to start reducing the aminophylline on Monday (they're reluctant to do so over the weekend when staff numbers are down and they've seen how quickly I can collapse), so hopefully I'll be off the drip by the middle of next week and able to start getting some mobility back and that'll help shift the oedema.
They reswabbed me the other day for swine flu to see if the Tamiflu had worked. It hasn't. I'm still positive so although I had a seven-day course of it, and the usual is five days, I'm back on it for at least another five days. At least my muscles aren't on fire any more, even if they do still ache sometime and my body feels like it's been put through a grinder, and my lungs are still gurgly.
This has been a horrible time. I feel rather shell-shocked. I feel overwhelmed and yet simultaneously oddly underwhelmed. It's going to hit me full-force when I'm home, I think. At the moment I'm still in the 'getting on with it' mode that is necessary for recovery.
I'm supposed to be going on holiday for a week with my good friend O next Friday. We're going to Lancashire for a week of relaxation and writing. It seems unlikely that we'll manage to get there on the day we're supposed to be going, but I'm definitely going to need a break after this, and I've missed out on so much over the past year that I'm damned if I'm going to miss all of this holiday with O. We've both been looking forward to it for ages. We will get to some of it. We will. We will have fun and enjoy each other's company. We will write. We will not spend any time with flying pigs, or eat pork scratchings, and I will get rid of this curly tail and snuffly snout.
2011 can only get better.