“On the 16th March 2023 I was celebrating a friend’s wedding. Three days later I was in an ICU fighting for my life.”
For Nazreen from northwest London, a mum of two, wife and teacher, sepsis came of the blue. So grateful to have made the recovery that she knows so many don’t, she reflects here on how life can still change dramatically for tens of thousands of sepsis survivors like her each year.
The day of my friend’s wedding back in March 2023 I basically felt fine. At the wedding though I began not to feel myself, my back was really hurting and I didn’t have much appetite. The following day I developed a fever that I couldn’t get rid of. I then started to experience other symptoms like shivers and body aches and I began to feel generally fluey. I kept getting a high temperature then shivering and I had aches and pains accompanied by weakness and a strange rash on my neck. I thought that I might have meningitis so my family – including my husband, mother, father and baby daughter – took me to Northwick Park hospital to get checked out. I didn’t realise that I was as unwell as I was. My mother had to take my daughter to the hospital cafe to find a way to feed her with bottles and the chef at the hospital made my baby some eggs. The hospital admitted me right away though and it turned out that I had incredibly high levels of inflammation in my blood. Blood samples were taken and analysed by various doctors and my blood was cultured to investigate the bacteria in my bloodstream. I had scans to check for blood clots, especially as my left arm was not moving and was incredibly bloated with fluid.
I received IV fluids and antibiotics – I think I had four different types in the hope one of them would pull me through. Because of a lack of beds I had to wait in a side room on a stretcher for a few hours. Then I was admitted straight to the ICU as an urgent case. Just six days after my friend’s wedding I was diagnosed with sepsis and septic shock, a diagnosis made by a senior doctor and his team in the ICU.
I was still so unwell that I could barely process what we were being told. I had never even heard of sepsis. I have two small children and my baby daughter was still breastfeeding at that stage. All I could think about was her and how she was doing without me.
I think my family were in shock; they really thought they could lose me at any point as the hospital said they were doing everything they could. Our community was very supportive during this time and the well-wishes and prayers lifted us and gave me hope.
The team in the ICU were brilliant and continued treating me with a variety of antibiotics in an attempt to pull my body out of septic shock. The doctors and nurses at Northwick Park were incredible in the way that they spotted and treated me. Family and friends helped at the time too and their understanding and compassion have been important during my recovery; my family ultimately helped me get out of the hospital bed and start standing again. My mother has helped me to stay mobile and comes frequently to help me and my husband with my children.
After almost two weeks in hospital, I had to learn how to walk and do everyday things again. I am lucky to be alive and know it could have been much worse. Most sepsis shock survivors have a long recovery journey and even after more than a year I still struggle with mobility, weakness, joint pains and simply doing some everyday tasks. Prior to my diagnosis, I had been a very active person and never caught more than a cold. We now know that I contracted a bacteria-based blood infection but nobody has ever been able to pinpoint where from. I am very lucky to be alive and also not to have had any amputations as a result of sepsis.
Sepsis recovery takes a long time. I have always been someone who enjoyed being active and out in nature and I enjoyed reading, being creative and socialising with friends and family. For the last year I have had to create and take full responsibility for my own treatment plan. I understand what my body accepts and know that for me rest is the most important thing, which is obviously very difficult with two young children. I have been combining taking vitamins with physiotherapy, kinesiology, ergotherapy and breathwork and I have focused on my mental health too. An anti-inflammatory diet has been helpful too.
When I was diagnosed I think I thought that a recovery was possible but I did not think it would be so hard. Nobody told me about post-sepsis syndrome. I know now that it will take time. I am slowly regaining aspects of my life.
I was keen to share my story with Sepsis Research FEAT because it is so important that more people know about sepsis and how to spot it. I am very lucky to be alive.
I would encourage others to make sure that they understand sepsis and to go straight to hospital if you recognise symptoms. Do not wait. If I had waited one more day I would have died. I would also like people to know that recovering from septic shock is a long journey and that it is not just a case of positive thinking and light exercise to fix the body. There are many of us – all part of a large community – who suffer from a whole host of symptoms. Some of us are feeling better after a year but some are still recovering after a decade or more. Everybody has a different story and recovery journey.
Nazreen’s story speaks powerfully of surviving sepsis but with a plethora of different after-effects to contend with. Of the 250,000 or so individuals estimated to suffer from sepsis in the UK every year it is thought that around 40% – or around 100,000 people – will go on to experience serious ongoing side-effects.
The area of post sepsis medicine is one that will continue to be of significant interest to researchers. It is already being explored in two Sepsis Research FEAT studies from Dr Zoeb Jiwaji of the University of Edinburgh and Professor Joanne McPeake of the University of Cambridge. You can read more about both research initiatives here.