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Janet's Story

December 2022 I was getting ready for Xmas and family visiting. Both my partner and I were feeling unwell, all I remember is a day on the sofa feeling wiped out then only learnt from looking at texts on my phone and from what my partner tells me what actually happened. I complained of a headache like I’d never experienced before, some diarrhoea and vomiting (but nothing like norovirus that I've had several times in the past as a care worker.)


My partner became concerned as I was becoming confused and made a couple of phone calls to the GP and 111 but nothing was picked up as a concern. He tried to buy Dioralyte as thought that might help but everywhere was sold out. 5 days later on 21st Dec my partner came upstairs to see if I was OK - I told him he needed to help me to the bathroom and that “this doesn’t look good’. I then had a seizure and collapsed. He rang 999 and was told to commence CPR. It was ambulance strike day but was luckily was deemed category 1and 2 ambulances, an ambulance car, fire service and air ambulance attended all within minutes. They struggled to find the house, so my partner had to abandon CPR and go and direct them. Soon there were 10 people in the house, A stroke was suspected, and I was taken to the nearest stroke unit with availability.


In the ED loads of tests including lumber puncture and was stated immediately on meningitis abs... CT scan showed no stroke, bloods showed severe hyponatraemia, the lowest sodium they had ever seen. This quickly leads to coma and death and if treated too quickly causes swelling of the brain. Response was slow, and I stopped breathing several times so was transferred to ICU.


Here they continued to rectify the levels, they found I had aspiration pneumonia and they struggled to keep my heart rate down. I had a day and night of delirium where they record that I was pulling all my tubes out and shouting get off me…. sedated with several drugs as Halperidol didn’t work.


I remember absolutely nothing until I saw my partner on Xmas day and asked why I was there. I can remember thinking ‘well that’s fine if that’s how dying is as I didn’t feel a thing’! He was just relieved it wasn’t a stroke as he knows that’s one of my worst nightmares having seen my grandfather left a vegetable by one. I still have no memory of any of the 5 days before admission nor of ICU. 


On Boxing Day, they transferred me to a ward and that was an absolute nightmare. I wasn’t mobile, had no physio, was dumped from a wheelchair onto a bed and that was agony going from the comfort of an air mattress to a ward bed. No-one understood why everything hurt so much but I felt like I’d been kicked around a football field and this continued for several months at home.


I was given menus to fill in - this was impossible as I was hardly ‘with it’ - so was just given snacks and had to constantly ask for drinks. I had to stagger to the bathroom unaided and also had to try and wash myself when presented with a bowl and soap. On the second day I had hardly slept as the ward was so noisy and I hurt so much, and I knew I wasn't getting any proper nutrition. I requested Fortisips only because I knew about them as an ex care worker.  I eventually discharged myself as I was getting no care or treatment apart from observations which were apparently ’normal’ and the latest chest x ray was clear. There was no follow up or rehab planned.


The next morning, I was straight into the GP as she wasn’t happy when we phoned…my heart was racing and bp was very high…. how we got in there I don’t know as could hardly walk. She had me admitted straight back to A& E where I was put on a drip for dehydration and antibiotics just in case still had pneumonia and a beta blocker for the racing heart.  Subsequently they referred me to cardiology and neurology. They found I have a bicuspid aortic valve which wasn’t contributing to my ill health but is being monitored regularly. 


Only because I have a daughter in law who is an ICU sister in another hospital did I hear of ICU Steps. From their information I started to learn why I was feeling so ill. I assumed it was a 6-week recovery like I’ve had after a couple of operations. No-one mentioned any different, though my GP was more knowledgably and very kind. 


I had to fight for an ICU follow up which I got after 6 months. That triggered a psychotherapist and physio referral. The psychotherapist was immensely helpful, as was a book she recommended “The Reality Slap’. I needed to learn acceptance of the new me (not easy and I’m still not there!). The physio was less than useless, and only from (Gareth and Jo ) is my body starting to recover its strength. 


14 months on, and Critical Care Network is keeping me going…. still unsure what lies ahead, I’m about 50%  of the old me!

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