In memory of Rachel Rosemain, September 2022
In 2018 I was discharged from hospital having had sepsis. At the point of discharge, I wasn’t even aware I’d been treated for sepsis. I thought I was merely recovering from double pneumonia and I therefore had no idea what recovery might look like.
As I knew no better, two weeks later I returned to work as the head teacher of a lovely, happy, joyful special school, just in time for the new academic year – perfect.
I’d been to my GP to inform them I’d been in hospital and it was only then I was told that I’d had sepsis: I’d been terribly poorly and had been hours away from dying. I wasn’t provided with any information on what life post sepsis may feel like so, at that time, I still had no idea that it would be unwise to go back to work.
What followed is what I now understand as PSS: Post Sepsis Syndrome. For me this has been far worse than when I was in hospital with sepsis as throughout my hospital stay I had been delirious, had very little idea of what was going on and had been on a massive amount of prescribed drugs.
When I returned home from hospital, I couldn’t explain what had happened to me but I felt tired, really tired. I put immediate pressure on myself to behave as before – cooking for the family, doing my share of the chores, going on family adventures at weekends so our little one was back to ‘normal’, and of course I was back to working long hours.
I was sleeping sitting up, as I couldn’t breathe when I lay down. My partner said he spent months watching me during the night as I was not breathing properly. Twice I got pleurisy – a condition which causes a sharp chest pain when you breathe – and was admitted into hospital overnight both times and was discharged home with antibiotics. I also contracted chest infection after chest infection and I was aware that my immune system was very compromised.
My sepsis was due to uric kidney stones, which I did not know I had. A 2.5cm kidney stone had dislodged from my left kidney and got stuck in my ureter and as the stone was already infected the infection ran rampant all over my body, I developed pneumonia and I became ill with septic shock. My left kidney is now clear but I live with a staghorn calculus uric stone, which fills the cavity of my right kidney. I am on a low dose of antibiotics constantly and will be as long as my staghorn calculus remains. This helps protect my body from infection and sepsis. I have also been prescribed a diuretic tablet, as my kidney function is not great.
So pleurisy and chest infection…next was gout, for which I was again hospitalised. Even putting a sheet over my feet at night was sheer agony. No one could tell me why this was happening, until I had a myocardial infarction, which led to my having to have a stent fitted. I then finally came under the radar of a Professor who has taken on responsibility for my entire healthcare. He knew why I’d had the myocardial infarction and why I was getting gout. At this point, which was well into 2020, it was discovered that my kidney stones were uric stones, not calcium. I was making too much uric acid, so from that point on, I was no longer allowed to eat any fruit as it contains so much uric acid.
Let’s go back to the 2.5cm infected kidney stone, stuck, infected, in my ureter. It was 14 months after my initial discharge post sepsis that they removed the stone. During these 14 months I got folliculitis from the jacuzzi at the leisure club I was a member at. Susceptible to seemingly all infections, I’d picked up a nasty one and folliculitis quickly spread over my entire body. It was the day when my partner and I were watching the rash spread down my arm – I was blown up like an over-stuffed haggis and I could barely breathe – that I called an ambulance. Initially the hospital could find nothing wrong…I refused to leave hospital though.
Eventually, they identified the rash as folliculitis and started treating it. Due to ascites, I had so much fluid filling my body that all my organs were being crushed and were being pushed up into my chest.
My left kidney is now clear but I live with a staghorn calculus uric stone which fills the cavity of my right kidney. No one wants to operate to remove it as that would mean three procedures which I wouldn’t survive. I am on a low dose of antibiotics constantly and will be as long as my staghorn calculus remains. This helps protect my body from infection and sepsis. I have also been on a diuretic tablet for over 3 years now, as my kidney function is not great.
Pleurisy, chest infections, gout, a myocardial infarction, having a stent fitted, folliculitis and ascites. I have made no mention of the panic attacks post sepsis: the hallucinations and the PTSD that I had no idea I was suffering from until I rang my GP surgery and said I was worried about my own mental health. Nine months later I got ten sessions of CBT which I found helpful and allowed me to become the empowered woman I had been before.
My other symptoms post sepsis have been:
PHYSICAL:
- Difficulty sleeping, either difficulty getting to sleep or staying asleep
- Fatigue, lethargy
- Shortness of breath, difficulty breathing
- Disabling muscle or joint pain
- Repeat infections, particularly in the first few weeks and months following the initial bout of sepsis
- Poor appetite
- Reduced organ function, e.g. kidney, liver, heart
- Hair loss
PSYCHOLOGICAL AND EMOTIONAL:
- Hallucinations
- Panic attacks
- Flashbacks
- Nightmares
- Decreased cognitive (mental) functioning
- Loss of self-esteem
- Depression
- Mood swings
- Difficulty concentrating
- Memory loss.
- PTSD.
By this point, I had given up work. I now find myself – after a 26-year career in education and having run a school – unemployed and on Universal Credit. My life is unrecognisable. The past three years have put so much pressure on my relationship and have brought so much stress, anxiety and worry to my family. I’ve lost friends, my personality has changed and life is very difficult. I am a warrior and have always been a survivor, but I have been to some very, very dark places.
Finally, fairly recently, I was diagnosed with late onset type 1 diabetes, and now have to inject insulin into my body twice a day. I have lost over 6 stone but am now fighting not to put weight back on due to the insulin. The type 1 diabetes, undiagnosed for 3 years, now means I have neuropathy in my toes. My circulation is still good and the nerve damage is not too severe yet but the pain keeps me awake and brings me to tears.
I believe that we need to work to ensure that sepsis patients are discharged with proper support, being signposted to organisations which can help with life post sepsis and we must have conversations prior to discharge about recovery.
This is my experience of Post Sepsis Syndrome – a condition not recognised by many medical and clinical professionals. I’m telling my story in the hope that it will help others. Please understand that I am lucky: I am in one piece physically. I feel blessed.
Sepsis Research FEAT is the only UK sepsis charity dedicated to research. They need donations to continue their world-leading research into why some people are more susceptible to sepsis and critical illness than others. They also work hard to raise awareness of sepsis and its symptoms, including those like mine.
My story highlights that recovery from sepsis is not always straightforward. Many people go on to experience psychological and/or physical difficulties, which they are not necessarily prepared for. I hope that my story lets others know that they are not alone, and helps to improve the situation for others in the future.
Thank you for reading about me.