Lessons from surviving sepsis – World Sepsis Day 2018

This world sepsis day, I’m incredibly grateful to the NHS professionals that have saved my life eight times – but I also know that there’s a lot left to learn. Some of my battles with infection have given me some important lessons to take away.

The first time I got sepsis outside a hospital I didn’t know what was happening to me. I was feverish, exhausted, confused. None of the people around me knew what was wrong – I barely know. That night, I had the runs, I was vomiting, I was hot and cold, vomited in bed, decided to sleep on the dry sofa, threw myself to the floor. Dragged my paralysed legs to the bathroom, dozed off on the toilet bowl. I was found on the sofa and eased back into bed. The next day I was too confused and tired to communicate, but kept refusing the doctor, and we didn’t know what was wrong. By the time the doctor came out, it was time for an ambulance, and I was in hospital, in agony and confused. I was seriously ill, but recovered and was discharged.

Lesson to learn: if someone has a catheter, or any other kind of tube, open wound, or venous access, it is essential that their family and carers / PAs know the signs of sepsis and how to respond if it happens.

After discharge, I was better for ten days, then sepsis again. Then the same happened again. That, the third time in a run of sepsis, they treated far more aggressively, and I got c. diff, but the infection was gone, and I had a few months before I next got sepsis.

Lesson to learn: infections can recur if there is any bacteria left in a reservoir, it’s essential to treat sepsis aggressively and rapidly

Another time, my sepsis came with respiratory failure and a biPAP because of the carbon dioxide buildup in my respiratory system. Part of the reason I got this sepsis is because a pharmacist (who had access to my list of medications) gave me an antifungal for a fungal infection that clashed with my opiates, increased their bioavailability and my body had no resources to fight the infection. When it hit, I was overwhelmed quickly – so much so that I was lucid when we called the ambulance, and entering a coma by the time we reached the hospital – 8 minutes away.

Lesson to learn: check all medication interactions – every time

Another of the occurrences was an infected pressure sore. Despite all medical recommendations, I wasn’t (and am still not) being turned every 2-4 hours, and out of nowhere I developed a massive blister on my hip. When I went to the hospital, they sent me away because it wasn’t infected – despite my emphasising that an open area bigger than my hand was bound to become infected. The next day, my pulse and temperature shot up, and an infection took hold. I resented this sepsis more than any other, because it was so avoidable.

Lesson to learn: if a patient has a large open wound and known immune problems with a history of sepsis, listen to their concerns.

The worst my sepsis has gotten was when I acquired it in a hospital. I had gone in to have my urethral catheter related with a suprapubic, and because I was done last in the day I was kept in overnight for observation. I have no memory of this, but nursing staff have filled me in. That night, I said to a nurse that I thought I was getting sepsis. In her own words afterwards. “I panicked and didn’t know what to do”, so she handed over her concerns, and left it. By morning I was too unwell to respond to texts and my housemate called the hospital in a panic. By afternoon I was in intensive care. I stayed there for four days. When I was discharged back to the ward I had been on pre-intensive care, the nurses were incredibly apologetic and felt very guilty – but it was difficult, because I had seen what was happening to my body, and nobody acted to check my white blood cell count or start antibiotics until I was very seriously ill.

Lesson to learn: when a patient mentions something like this, don’t panic – act. Better to raise the alarm too soon than too late.

My final sepsis tale is one of success. I woke in a hotel in the night, on my holiday (in Scotland) freezing cold. In the morning I had a fever, and called 111. Within 20 minutes they’d organised me an appointment with an out of hours doctor at the local hospital. That doctor saw me instantly (less than an hour since I’d woken with a fever), agreed the infection had become sepsis, and warned me that there would be a wait for my blood results – maybe as much as a 15 minute wait – which seemed incredibly rapid to me. I got a bed within an hour, and antibiotics within the same time-frame, and by morning the infection was under control.

What made that time a success?

I was understood as the expert on my body. When I said what was wrong I was believed, and when I said what I needed it was given to me. This meant that it didn’t have time to become severe sepsis, I am endlessly grateful for the NHS, and the improvement in identification and treatment of sepsis since it first happened to me has been incredible – so much progress in only two years – but there is always more that could be learned.

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