Julie's story

Looking back on the events of 12 months ago it seems almost impossible to me that I came so close to dying, and that so many terrible things actually happened to me. Maybe that is partly because I have no personal recollection of anything, certainly not lucidly, until after the worst was over. But the scars tell their own story, and I now wear my tracheostomy scar like a badge, a daily reminder of what I lived through, and that things really can only get better.

I was coming up to my 33rd birthday and my Dad's retirement party was looming. I decided to take my 22 month old little boy to stay with my parents the night before the party so that I could help them prepare the next day. I had been feeling as though I was "coming down with something" all day and by the evening I was running a temperature and shivering. I went to bed with paracetamol and hoped I would feel up to cocktails the next day. However the next morning I felt so rough I couldn't get out of bed, and when my husband arrived to join us we decided it was best for everyone if I went home. That Saturday night is probably the last thing I have clear memories of – running a 40° temperature, diarrhoea, starting to cough, trying to call for my husband without waking the baby. I knew I felt worse than I had ever done before in my life, but we both presumed I had bad flu and our main concern was that our little boy didn't get it. So on Sunday I packed myself off to my parents' house again, in quarantine, and my husband said he would take Monday off work to look after our son. We both hoped I would be better by Tuesday and everything could go back to normal.

I remember very little of the few days before my admission to hospital. By Monday morning I was still running a very high temperature and coughing quite badly, although I can't really remember the coughing. My parents had got me an emergency appointment at their GP surgery, after failing to persuade the receptionist that I needed a home visit, and so they bundled me into the car and took me there. The GP gave me a cursory check-over, took my temperature and listened to my chest. She declared that I had influenza, with possibly a super virus on top. She told me I didn't have a chest infection as my chest was clear. She said she would call me that evening and if there was no improvement she would prescribe antibiotics for my parents to go and pick up. She did duly call later, and on learning I was no better at all prescribed me a course of Amoxycillin. I took the first two tablets of the course.

By Tuesday evening my father was extremely worried about me. Apparently I was complaining of chest pains and having difficulty breathing. He decided to take me to the local minor injuries unit. Thankfully the nurse on duty saw instantly that there was a problem, put me on oxygen and called an ambulance to take me to Gloucester A&E. She said I needed a chest x-ray and called the hospital to warn them to expect a critical case. I can hardly remember anything of the ambulance journey and my time in the Gloucester Critical Assessment Unit. I had a chest x-ray, which I don't remember at all, and then was told by a doctor that I had a "nasty pneumonia" and a consultant would see me in the morning. I do not remember this, but I sent my husband a text message to let him know at 2am, so obviously someone had told me something.

Having been sent home by the hospital at 2am, my Dad then telephoned at 7am the next morning to find out "which ward I had been put on". He was told that I was still in the same critical assessment bay, and he sensed that there was something wrong. He called a very good friend of his, who is a consultant at the hospital, who promised to go down and check on me. By the time he reached me I was in a pre-arrest (the state before cardiac arrest). I do remember hearing his voice, I remember him calling my name and trying to get me to respond. But in my head I was going through what I believed to be a rational process of reasoning by which if I didn't reply there was more chance of them doing something to help me. The thought process went on and on, like a spiral, and I did actually feel strangely peaceful. There was no pain (perhaps I had already been given pain killers) and not really any panic. I have a vague sensation of being pushed through the hospital, with running people at my side… then nothing.

I wish I could say that I "woke up" three and a half weeks later, but perhaps that would have been worse. Instead from the moment when my sedation was reduced and I started to be "aware", I believe I went through a very gradual process of realisation. Realisation of what had happened to me, how much time had passed, what my family had been through, and finally and most painfully, that I had been away from my little boy for a heart-breaking amount of time.

The details of my illness I have learnt from my Dad's diary, my own questions to the doctors and my husband, and my wonderful friend and ITU physiotherapist. I had somehow (the doctors have no idea how or why) contracted pneumococcal pneumonia. Whilst this is a community bacteria which we are all exposed to, it is very rare for someone of my age to actually contract the infection. Not only, but my case appeared to be very aggressive as I got very ill very quickly.

By the time I arrived in Gloucester ITU I had septicaemia, and this was initially the biggest worry. Luckily the antibiotics I was pumped with did their job and the infection didn't spread to any other vital organs, and so my lungs and their continued deterioration became the focus of attention. During the three and a half weeks I was sedated for, I was intubated for three weeks, put on a normal then oscillating ventilator, given a rotating bed, fitted with two chest drains and a novalung filter, suffered a pleural effusion (hole in my lung) and a large internal bleed which left me with an enormous haematoma. I was given litres of blood and every antibiotic known to man. To make matters worse, I also contracted Colostrum Difficile (C-Diff), a bacterial infection of the intestine that you are prone to get if you take that many antibiotics. This gave me terrible diarrhoea and led to me being put in an isolation room as it is highly contagious.

I do have a few vague memories of the horrible dreams that I had whilst under sedation. Most clearly I remember that I was being held "prisoner" in a hospital that was on a boat and the boat was running out of water. Apparently dreaming (or hallucinating) that you are on a boat is quite common due to the rotating bed and inflating mattresses that you find in ITU wards.

Once I started to wake it was to a world of fear and panic. I was being given temazepam to help me sleep which gave me what seemed momentarily like blissful moments of respite, but then I would wake up almost exactly 2 hours later, in a blind panic, covered in sweat and boiling hot, and unable to communicate my discomfort. As soon as I was aware enough to make decisions, I asked to stop all medication to help me sleep. The result was that I believe I came out of the "drug fog" much sooner than I would otherwise have done, however I got roughly 2 hours sleep in every 24 hours for my entire remaining 3½ weeks in hospital.

As soon as I had "turned the corner" and my lungs had started to show some signs of recovery I was started almost immediately on a weaning process to get me off the ventilator, which I had already been on for nearly 4 weeks. I also began physiotherapy to slowly build up my strength again. I was determined to get better quickly for my little boy, and I sincerely believe that having him as the driving force behind me allowed me to make such a quick recovery.

Within 3½ weeks from first having my sedation reduced I was discharged from hospital. Admittedly I was not really able to look after myself at the moment of discharge, but I so desperately wanted to get out of the hospital and back with my family that the doctors "bent the rules" a little. Funnily enough, the moment I was told I could go home "by the end of the week" my panic attacks stopped.

The staff who worked with me were all exceptional, and as I look back on my experience now I have such admiration for people who can work in that environment every day and yet always care. I owe them my life and I will never forget that. However my time in hospital was the most terrifying and awful experience of my life. I remember….

  • Never being able to get my body temperature right – too hot, too cold, too hot again…
  • The sound of the ventilator alarm
  • Slowly realising that I couldn't move (complete muscle wastage) and the fear this brought with it.
  • The joy of getting pain in my leg muscles, as that meant they were coming back
  • The frustration of trying to communicate – why can no-one lip read?
  • The exhaustion of trying to communicate just one simple request
  • Being constantly uncomfortable and unable to move to relieve the discomfort
  • Lower back pain and neck pain
  • Falling asleep whilst my sister massaged my neck – a moment of relief
  • The weight of my head when I tried to sit up for any length of time
  • The look on my parents' faces when I was loaded into the ambulance for transferral to Oxford hospital to be closer to my home
  • The ambulance ride to Oxford – I panicked for the entire journey and was convinced the portable ventilator wasn't working
  • My husband's happiness that I was still alive in stark contrast to my own despair at my situation
  • The never-ending nights…watching the clock
  • Being frightened the whole time and feeling like a rabbit in headlights
  • Desperately wanting control of my own life back – getting very frustrated and annoyed with people trying to make decisions for me
  • Paranoia – things that seemed so real to me at the time but later I realised were ridiculous. For example I spent an entire night convinced that the ITU of Oxford hospital was a cover for ID fraud and they weren't actually trying to look after me at all. I even told my friend that I had a video of the nurses "being horrible to me" – a video with what?!

I was so frightened of being left on my own that for the final 2 weeks of my time in hospital a member of my family stayed at my bedside 24 hours a day. Knowing that there was someone next to me at every moment allowed me to get some sleep and kept me a little more sane. With rational hindsight, the reason for my fear was mainly lack of control – I had gone from being a fit, young woman in control of her own life and that of her family to a helpless blob in a hospital bed, unable to sit up, let alone walk, and unable to speak to communicate my fear. The biggest sense of relief and jubilation I felt whilst in hospital was the moment they removed my tracheostomy. Whilst many people find it difficult to "learn to talk again", I was very lucky and my voice box had suffered no damage. The minute the tracheostomy tube came out I could speak again, and it was like being released from prison.

It is now a year (exactly, today) since I was discharged from hospital and there isn't a day that goes by when I don't think about what happened to me. Initially I wanted to learn everything I possibly could about pneumonia. Then I wanted to find out everything I could medically about my time in hospital. Slowly, over the months, I have also wanted to ease information out of my husband about his experience, the little details such as what was the first thing I said when I woke up and did he hold my hand when he sat with me.

It has been hard to reconcile the two separate lives that we lived during that time, and neither of us will ever be able to fully comprehend what the other went through. Initially I think this put our relationship under a little bit of a strain. Perhaps we had built our "reunion" up in our heads to be something more than it could ever be for two emotionally and physically exhausted people. However the old saying "time heals all wounds" really is true, and we are now moving into a new era of serenity. My husband still stiffens every time I cough and I don't know how much longer it will take for either of us to have a more normal reaction to illness, but we will get there. My little boy, predictably, has seemingly forgotten the whole thing and is far more worried about the whereabouts of his favourite cuddly cat which he left in Spain when we went there recently!

There is so much more I could write, but I have tried to keep this to a digestible length without missing out any of the really important details. I hope it has been in some way helpful.