Just over 2 years ago, my sepsis journey began.
Little did I, or any of my family, know what was to come over the following hours, days, weeks and months. Most of us had not even heard the word sepsis before, let alone know what it could do.
I was a 42 year old woman. A mother of three, fit, healthy and active. I worked full time, looked after our house, children and two dogs. I was lucky enough to have never been ill in my life before – never even having to go to bed with a headache.
So, what happened to me was very sudden and shocking.
I woke on Friday morning 22 May 2015 at the usual time. I felt very tired – a little sluggish. However, as I was a night shift worker for Tesco – working 10pm to 7am – it was always hard to catch up on enough sleep….feeling tired seemed to be par for the course, so I didn’t really think much of it…
I soon started to feel nauseous too though, and it wasn’t long before I was having to dash to the bathroom. I also began to suffer from diarrhoea so I resigned myself to bed. I felt hot and exhausted. I wasn’t too worried at this stage, as I was quite involved with my daughter’s school and there had been a bug doing the rounds – I just assumed that I had caught it.
It was the beginning of the May half term holiday and we had made some exciting family plans! My husband Mike and I had planned a surprise trip to Euro Disney for the first time! We had kept it a secret from our two daughters and had planned to surprise them enroute. I started to tell myself that I must sleep this bug off to be well again by Monday morning – and I had absolutely no doubt that I would beat it.
However, during the course of the weekend my symptoms worsened and just seemed to consume me. The sickness and diarrhoea worsened – I was unable to keep even water down. My temperature had soared and I just lay in bed with no energy to even be able to listen to the radio.
I remained in bed, taking ibuprofen and trying to sip from sachets of Dioralyte to rehydrate myself.
Although I knew by Sunday that there was no way on earth I’d be able to make the trip to France, I somehow persuaded my husband to go without me. Although he was reluctant, neither of us were particularly worried about me – thinking it was just a nasty bug from school, and we didn’t want to let the girls down and spoil their amazing surprise. Early Monday morning, they set off without me. I felt very sad to have to miss out, but I just collapsed back into bed to rest.
I don’t really remember much of the rest of that day until my mother in law arrived around 5/6pm.
Apparently Mike had called me on my mobile – which I had answered – but he could tell from my voice and whatever words I had muttered, that something was seriously wrong. He immediately called his mum and asked if she would mind calling in and checking on me. As it happened, by complete coincidence, she wasn’t far away and got to me fairly quickly. I do remember her arrival as our door was locked and she couldn’t get in. I managed to bump down the stairs on my bum and unlock the door for her, before dragging myself back up the stairs and into bed once again. She remembers that although I was shivering and feeling very cold, my skin was burning and clammy. She immediately called for a Doctor but we were told to go to walk in centre about 30-45 mins drive away. I knew at this point that It was not possible – I was not physically able – I couldn’t do it.
We then turned to the NHS 111 service. My breathing was shallow and laboured, the sickness and diarrhoea continued together with my very high temperature. My mother in law made several phone calls to them over the next few hours. It was clear to her that my health was now deteriorating rapidly and that I needed help fast. She called 999 in the end as the 111 service were sending a GP to me, but it wasn’t going to be for hours.
(Later, once I had made a complete recovery, we received a written apology from 111 as they admitted they had coded my symptoms incorrectly and I should have had a much quicker response.)
Once the paramedics arrived, which I can remember parts of, I was told that I was hitting all of the sepsis markers and that I needed to go to A & E immediately.
My sister and mother had also arrived at my house by now and my mother travelled to the Hospital with me in the ambulance. I remember feeling bad that I was putting her through this ordeal.
When we arrived, I was immediately put on oxygen and thoroughly assessed. They needed to reduce my temperature. My rings were removed, a catheter inserted, bloods taken, iv antibiotics and fluids started. My sister was asked what on earth had taken so long to get me to hospital as I was apparently down to “the golden hour”. Nobody had the energy to explain that they had been trying for hours, but that 111 had let us down.
Blood cultures soon revealed Group A Strep Septicaemia. My organs were all starting to shut down and my veins had collapsed, making it very difficult to administer the medicines. I was soon moved to the HDU, where I would remain for the following 8 days.
My husband was obviously aware by now of my serious condition. The three of them were making their way home from France. He has told me since that he did not want to deny our daughters the chance to see their mum again – at this point we did not know if I would make it or not. I think it must have been a very unpleasant journey for them.
Unfortunately by the time they arrived at the hospital, I was already in HDU and my youngest daughter, being under 12, was not able to see me. She seemed to have coped with this very well though and had lots of support from my family and friends.
I received excellent care and support whilst in HDU. I was on oxygen for some time and given foam lollipops to suck, for some moisture. My temperature was still spiking and I drifted in and out of consciousness. I had a jugular cannula sewn into my neck, one in my arm and one in my hand. I was given multiple antibiotics and fluids due to being severely dehydrated and in profound metabolic acidosis. The nurses all made conversation with me and were interested in getting to know me. I felt very safe and for a considerable time afterwards, I missed the safety of my little room, as I called it.
I hallucinated a fair amount too, which makes us all smile now. At the time I think my family were a bit scared that the sepsis had affected my brain! There was a picture of some poppy fields at the end of my bed. To me, at the time, it was like watching television and I was convinced that the picture came to life and changed. I would regularly give my visitors updates on what I could see and got quite irritated when they couldn’t see the same thing!
Obviously I had several tests and procedures during this time, including 3 CT scans, ECG & x-ray.
The most confusing part to all of it is that they were unable to ascertain what it was that had caused the sepsis in the first place. I had had no other symptoms of an illness or infection, other than what we now know where the signs of the sepsis itself. That, for me was the most worrying thing. Not knowing what had caused such a deterioration in my health so quickly was quite frightening as I had no idea what I had done to cause it or indeed what to avoid in the future.
After 8 days of intensive care I was stepped down to a medical ward, where I would remain for the next four weeks. Although I was no longer critical, my kidney function was a concern and I was carefully monitored. Bloods were taken every day, and my antibiotics continued. I was still bedridden and so weak that I was unable to sit up or move in the bed by myself. I had started to feel hungry after not eating for 7 days & I was able to eat small meals which I was encouraged to do to gain some strength.
My temperature kept spiking though which was indicative of an infection, so I received iv paracetamol on a daily basis and very close monitoring. I still felt so weak and I can vividly remember some dark days where I felt really scared. I didn’t seem to be making any progress or feel any stronger. My weight suddenly started to plummet and I was losing several pounds every day, with no explanation. The skin on my hands and feet began to peel. I lost several layers of skin. I began to think I was more seriously ill than I had first thought.
I don’t think I realised that I just needed to give my body time to recover from such a huge shock and the devastating impact of sepsis.
After the fourth week on the ward I was told that it was time to remove all the plastic from my body!! This was a huge step forward and positive progress. My kidney function seemed finally to be working normally so my catheter and cannula were removed. I was no longer literally tied to the bed. Although I needed a Frame with which to move around the bed and to the toilet, I felt liberated!! The freedom!! It was a great moment and a very happy memory.
My discharge followed soon after. I felt quite frightened at first – who was going to complete my hourly observations? Who was going to check my temperature wasn’t spiking?
But I was so pleased to be home with my family again and my dogs – my fears gradually subsided.
I was discharged with two Zimmer frames and a wheelchair. I needed help with everything but slowly and surely I gained some strength and independence. It was a real help to be back at home with my family around me. Sadly for me though, my freedom was short-lived. I was experiencing severe breathlessness and pain in my chest. My GP was worried that I may have a blood clot as my blood pressure was very low, I was anaemic and had pain in my chest, which was worse when breathing in.
I was readmitted to AAU where it was established that part of my right lung had collapsed. The anaemia was symptomatic of my other issues but luckily a pulmonary embolism was excluded. I was discharged after two days.
Further intrusive tests were deemed necessary though – to give my body a thorough examination and try to find the route cause of my septicaemia.
Over the next few weeks and months, I had to attend for an Ultra sound Scan, an MRI scan, a Colonoscopy, a Gastroscopy, and a Cystoscopy.
All results from these tests came back clear and my body was deemed to be working correctly and well.
I have to say that I am so grateful that I was able to survive sepsis with no physical scars. The mental ones however, are different. Some months later, I was invited back to the HDU department to talk through what had happened to me there. I even got taken back to “my” room. It was such a comforting experience and it seems strange to say out loud that I could have stayed there for hours. I’m guessing its because its where I felt safe and looked after while my life was hanging in the balance. Its hard to explain. I am now back to working full time, but in an office now which is much less physical than my old job. Whilst I have made a fantastic recovery, I know that I will never be the same person I was before. I can get quite overwhelmed by little things and need to rest much more often than before.
But I accept this and do not grumble. For some reason sepsis didn’t beat me and I will be grateful every single day.
PS. We made it to Euro Disney later that year!
