Copyright dailyrecord
A 37-year-old woman says she has been close to death after suffering sepsis six times in five years. Amani's experience with chronic illness began in her twenties, in 2011, when she was a water sports instructor. A back injury while teaching coasteering, which involved sea swimming and cliff jumping, led to her suffering with permanent neurogenic bladder. This a condition where the nerves that control the bladder are damaged, which resulted in her not being able to pee. Since 2016, she has constantly had to use catheters, which is what has caused her sepsis each time. When Amani first got sepsis in 2020, she was intermittently self-catheterising up to 30 times a day, due to her bladder condition, which greatly increased the risk of contracting a urinary tract infection. "In February 2020, I woke up one morning with what felt like a really badly sprained back," Amani said. "I thought I'd somehow pulled a muscle, but I also felt quite delirious and unusually unwell. I took my temperature and I had a 40C temperature. Unfortunately, when you live with severe chronic illness, you are used to living with such extreme and completely debilitating symptoms every day, so I pushed through my intense and scary symptoms for a couple of days. "I remember feeling like something really bad was about to happen - an impending sense of doom - which I later learnt was actually a symptom of sepsis, and has been a symptom of it every time I have had sepsis since." After two days of being seriously unwell, Amani eventually called 111 at 4am, who immediately sent an ambulance to her flat. "Due to my decades of medical trauma and fear of 'making a fuss', I tried to refuse the ambulance and said that I would just get a friend to take me to the GP in the morning," Amani said. "Luckily 111 refused my request to deny the ambulance, and sent one straight away. "When I was then taken into Resus at the nearest hospital, they told me if I had actually denied the ambulance, I would have died in my sleep. I was only 2 hours away from dying when I got to them." Amani was treated with IV antibiotics, fluids, and pain relief. She was also given a lot of IV fluid to help her kidneys function properly again, but unfortunately her lungs took on fluid and she became really unwell from that, too. "I don't remember much of the hours and days that followed, because I was so unwell," Amani says. "Eventually, after a few weeks of being in hospital, I was discharged home. Every time I have had sepsis, the transition of being discharged home from hospital is really hard, especially when you live alone. "When you have nearly died again and been through so much medical trauma, adjusting back to 'normal life' - whilst still very unwell and recovering - is really difficult. Not only physically, but also mentally." Amani has since learned that approximately 30% of all sepsis cases are due to urosepsis, a life-threatening medical emergency where an infection of the urinary tract spreads to the bloodstream. " It has always been urosepsis that I have had, which is sepsis from UTIs, due to me requiring catheters," says Amani. "The risk is greatly heightened if you have a catheter, or self-catheterise. But, despite all this, I had never been told about it, or what to look out for, despite being a catheter user and being immunocompromised. That is why I am so passionate about raising awareness about sepsis, specifically urosepsis, because it is so dangerous and can develop so dangerously quicker, and it is not talked about enough." Amani suffers with Post-Sepsis Syndrome (PSS) which leaves her with ongoing physical, mental, cognitive, and emotional challenges, following bouts of sepsis. 40% of people who have had sepsis live with PSS, which is a combination of physical, psychological, and cognitive problems that can occur after recovering from sepsis, often lasting for months or years. "From my experience of surviving sepsis, and that of the many people I have connected with that have also survived sepsis, it can leave a lot to process in its wake and after you have survived it," she adds. "Once you are home, and 'normal life' continues around you, yet you nearly died and have so many emotions to process, it can feel incredibly isolating. "Many people who have survived sepsis do not realise that it is common to experience symptoms following surviving sepsis - in both our mental health and physical health - so, raising awareness of post sepsis syndrome is really important, because it helps reduce isolation for post sepsis survivors and helps us better understand the impact of sepsis on survivors." An extra challenge for Amani is that despite being a repeat sufferer of sepsis, she often has to deal with the symptoms presenting differently. "Throughout the six times of having sepsis, my symptoms have slightly varied, and not always followed the same pattern," she says. "This is important, because sepsis can be so sneaky and can develop so quickly - for example my fourth time of having sepsis, in 2024, I had been admitted to hospital for a kidney infection. "When I arrived, I was only mildly unwell, so they kept me in the corridor for observation and to await treatment, but within an hour I developed a 40°C temperature and started vomiting, and passing out. I had suddenly become seriously unwell, and was rushed through to receive IV antibiotics, with sepsis again." Amani's sepsis symptoms have always varied slightly, but they have included a high or low temperature, vomiting and severe nausea, confusion and feeling delirious, an impending sense of doom, chills and shivering, feeling very systemically unwell, shaking uncontrollably, shortness of breath or breathing faster than usual, a rapid heart rate; feeling exhausted and sleeping too much or being unable to rouse properly. Amani is passionate about raising awareness of sepsis, which can often go undetected until it is too late. "One in five deaths worldwide are due to sepsis, yet so many people don't know what it is," she adds. "It is also really important to remember that sepsis does not discriminate - even if you are not at a higher risk of sepsis like I am, anybody can get sepsis, so it is essential to know the signs and symptoms. It can literally save a life. Sepsis is often not known about enough, and causes so many deaths that could potentially be avoided if there was more awareness. "As someone who was immunocompromised and self-catheterising and prone to infections, I was at risk of sepsis risk, yet I had no idea what urosepsis even was until I first nearly died from it in 2020." Amani works with sepsis charity Sepsis Research FEAT, helping raise awareness for the work and research they do. She wants to urge people to educate themselves about the symptoms of sepsis and always seek medical help immediately if they are concerned. "My biggest advice to anyone wondering if they have sepsis is that you know your body better than anybody, so listen to how you feel, and trust your instincts, because it literally can save your life," says Amani. "If you feel like something is wrong, seek immediate medical advice, because if I had tried to 'push through' any longer, when I first had sepsis, I would have died in my sleep."
