Julie's story

Helpless in a hospital bed

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. But the scars tell their own story and I now wear my tracheostomy scar like a badge. It is a daily reminder of what I lived through and that things really can only get better.



Bad flu


My Dad’s retirement party was looming, and my 22 month old little boy and I went to stay with my parents the night before the party. 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, but the next morning I felt so rough I couldn’t get out of bed. When my husband arrived to join us we decided it was best for everyone if I went home.


I felt I was “coming down with something”


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 felt worse than I ever had before in my life. On Sunday I packed myself off to my parents’ house again, in quarantine.

I was now feeling so bad that my parents decided to get me an emergency appointment at their GP surgery. 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 called later, and on learning I was no better at all prescribed me a course of Amoxycillin.


Out of conscience


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 the emergency department. 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 unit.

My dad telephoned the hospital at 7 am the next morning. He was told that I was still in the same critical assessment bay, and he sensed that there was something wrong. My dad called a friend of his, a consultant, who promised to check on me.

I remember him calling my name and trying to get me to respond. But in my head I was thinking that 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.
 

Waking up, slowly


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.


Apparently hallucinating that you are on a boat is quite common


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 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 remaining 3 ½ weeks in hospital.


Recovery 


As soon as 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 - having him as the driving force behind me allowed me to make such a quick recovery. Funnily enough, the moment I was told I could go home, my panic attacks stopped.


I could speak again, and it was like being released from prison


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 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 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, 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 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.

Initially I think this put our relationship under a little bit of a strain


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!


Julie's case


Julie contracted an aggressive case of pneumococcal pneumonia. Whilst this is a community bacteria which we are all exposed to, it is very rare for someone of her age to contract the infection. By the time she arrived in Gloucester IT, she had septicaemia, and this was initially the biggest worry. The antibiotics kept the infection from spreading to other vital organs. Her lungs and their continued deterioration then became the focus of attention.

She 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 the lung) and a large internal bleed which left her with an enormous haematoma. She was given litres of blood and antibiotis. She contracted Colostrum Difficile (C-Diff), a bacterial infection of the intestine that you are prone to get if you take many antibiotics. This gave her a terrible diarrhoea and she was placed in an isolation room as it is highly contagious.