Friday August 3rd 2018, I awoke with horrendous back pain, which escalated throughout the day, including during a 3 hour drive, returning home from being on holiday. By the time I got home (I had been driving), I couldn’t stand, sit or lie down for more than a few seconds as my pain was excruciating. I couldn’t breathe very well. My partner called an ambulance, by which time I’d removed all my clothes, such was my fever. I got blue-lighted to A&E; was given maximum morphine in the ambulance and for the next 5 hours in A&E, I was on a bed in a corridor. A nurse administered liquid morphine and then I was discharged, having been told: ‘”There is nothing wrong with you Rachel.”‘ I was too ill to realise at the time, but they did no investigations whatsoever, and I later discovered, A&E had lost all the notes from the paramedics.
Over the next 4 days, I was in and out of consciousness, couldn’t eat or drink, spent most of my time lying down and had convinced myself and family that I was simply coming down off morphine. I was vomiting everywhere, my partner tells me that I smelt like I was rotting; I was dying, my organs were shutting down. All unbeknownst to me at the time.
Tuesday 7th August 2018, in the middle of the night, I knew I was dying. I couldn’t breathe, I was freezing cold, had extreme shivering, then in the next second, I’d be boiling hot. I decided to pack a bag for hospital! 20 minutes later, I remember I’d managed to put in a toothbrush and a pair of knickers. My partner had been working through the night in his music studio. I came out of the bedroom, and met him in the hall. I was sweating profusely, Joseph told me I was ghostly pale, mottled and smelt disgusting. I announced I’d called an ambulance, that he had to take the phone off me and continue to talk to the 999 operator as I needed to go outside as I couldn’t breathe.
I have no recollection of how I got down the 28 steps to outside, but the paramedics found me sitting on the floor outside. I told them I was merely thinking about getting up. I was blue-lighted straight in to resuscitation at hospital, with a heartbeat of 244, delirious, very low blood pressure and a raging fever. I now know that the paramedic had, in the notes, written possible diagnosis: sepsis? Sepsis was never mentioned again, until a week after I was discharged.
I was stabilised, told I had double pneumonia, then after 3 different wards, remained in a final ward for 10 days, where they informed me that I had a 2.5cm kidney stone, stuck in my ureter, which would need removing (this is what had caused the sepsis). (Sepsis and Kidney Stones)
It took 14 months, before it was removed, as I was so ill. I was discharged, with no aftercare, no discussion about what my recovery would look like, how to manage, nor was I signposted anywhere for support. I didn’t even know I’d had sepsis. This was an unsafe discharged.
2 weeks later, I returned to work as a Headteacher…. the most ridiculous decision I have ever made. Then started what I now know it called Post Sepsis Syndrome: Pleurisy twice, chest infections, Gout three times (my kidney stones are uric acid stones and my body makes too much uric acid), folliculitis, an aggressive bacterial infection, which manifests as a rash, all over the body. I am very scarred all over my body due to this, ascites, which is where you are carrying excess fluid in every cell; I was carrying the weight of a small child in fluid, which went misdiagnosed and undiagnosed for months. Ascitis was crushing my organs up in to my chest, my lungs were filling with fluid, and I was incredibly, incredibly poorly for 6 months, not understanding why I couldn’t breathe, couldn’t walk and was peeing myself everyday. My GP even asked me if I’d considered a gastric Band!!!!!
Following that came surgery to remove my kidney stones on the left side, a myocardial infarction (heart attack), the fitting of a stent.
I’m on 13 different medications, have given up: caffeine, meat, alcohol, carbs, fruit (due to uric acid content), have been left with atrial fibrillation, PTSD, chronic kidney disease, heart disease, and have most recently been diagnosed with LADA diabetes, a Type 1 late onset diabetes.
None of this would have happened, if I was not discharged on Friday 3 August 2018, by a consultant, who told me ‘”there is nothing wrong with you Rachel.”‘
I am no longer able to work as a Headteacher, as I do not have that stamina anymore and I am not well enough to work at all at the moment.
I volunteer for the UK Sepsis Trust, raising awareness of sepsis, especially identifying and treating the early signs of the 6 signs of sepsis and I work with NHS, clinical professionals etc., to improve patient experience and understanding of Sepsis, across the NHS.