Type one diabetic since childhood, 30-year-old Rachel Stuart from Cheshire now works part time as an enterprise account manager for a telecoms and IT company. She enjoys reading, cooking, baking, holidays and the occasional spa break. She had already suffered from sepsis once and had been suffering with kidney issues and infections for a number of years before a second sudden diagnosis of sepsis in February 2022.
Prior to a second diagnosis of sepsis in February 2022 Rachel had already experienced mild sepsis many years before – treated successfully with antibiotics on that occasion. The day before she was diagnosed for the second time – 16th February 2022 – she was feeling a little bit under the weather – tired, with little appetite and feeling a bit sick. She worked during the day but was exhausted by the evening. Having managed a small snack, her partner James ran her a bath and she had an early night.
Rachel woke at around 2am with pain in her kidney area. She had been diagnosed with chronic kidney disease the month before so was not unduly concerned. She got out of bed to get some paracetamol and a hot water bottle. Over the next couple of hours, however, the pain got worse and she began to feel extremely unwell. James was insistent that they go to the hospital to get Rachel checked over. By the time they reached A&E at around 5am, Rachel was so unwell that she collapsed on the floor at the desk. She remembers James checking her in with the receptionist and passing over her details. Although semi-conscious at this point, Rachel ensured that James told the receptionist that she had previously suffered with sepsis and that it had felt similar. She had a sense that it was important for the team to know this straight away, so that it could be on their radar when they decided on tests and treatments.
At this time – immediately post pandemic – the hospital was still not allowing patients to attend with a family member due to COVID restrictions, so James was forced to leave Rachel alone in A&E. She was quickly taken through to an ambulance bay and had observations and blood tests done, before being moved to a majors bay in A&E where she underwent further tests and scans.
Rachel describes events from this point on as ‘a bit of a blur’ as she became progressively worse: ‘I continued to decline and at some point, I remember an intensive care doctor coming to review me. I remember being shocked at the time that he was there in A&E and feeling confused – I was so unwell I didn’t grasp what was happening to me. He explained that I had sepsis and that I might need some extra support and therefore might need to be moved to ICU instead of A&E.’ Rachel remembers her sense of shock, but also not fully grasping the situation – ‘I don’t think I understood how poorly I was until I had been in intensive care for a few days. I was so poorly, it felt like my brain wasn’t working properly and I was just in survival mode.’
Whilst still in A&E, however, Rachel’s condition worsened and her body went into septic shock. Her blood pressure was extremely low and doctors were giving her medication to support it, but were struggling to keep it up. She was moved into a side room in intensive care, where she was placed on monitors and a haemodialysis machine as her kidneys were not functioning.
Unable to see her family or partner due to COVID restrictions, Rachel only learnt subsequently from discussions with her family how unwell she had been. Rachel’s mum explained that the hospital had made it clear how unwell Rachel was and that the future was uncertain – a terrifying prospect. She told Rachel that she tried to remain hopeful, but that she was preparing to lose her. ‘She didn’t really have much knowledge of sepsis at the time, but she knew that it wasn’t good. I did speak to her and my dad over Facetime while I was in ICU – they definitely put on a brave face when speaking to me!’ Rachel remembers. Her mum has since told her that she sat down with Rachel’s dad and brother when she was first admitted to the ICU and spoke to them about the possibility of Rachel not making it through.
Rachel’s treatment in the ICU at Leighton Hospital in Crewe continued with a variety of different drugs: a number of antibiotics, potassium, vasopressors to maintain her blood pressure, fluids, oxygen and also a kidney filter/haemodialysis machine. She had arterial lines in her wrists, a central line in her neck to check her observations and deliver medications and she also underwent a number of blood transfusions. She remained in intensive care for two and a half weeks before being moved to a specialist kidney unit at Royal Stoke Hospital for a further two weeks.
Rachel continues to receive treatment for stage five chronic kidney disease (kidney failure). She has planned the type of dialysis she would like to have when the time comes and has had assessments for this to happen. At the time of writing she is also awaiting an appointment at Manchester Royal Infirmary to be placed on the list for a simultaneous kidney and pancreas transplant in the future. She knows that hers is a condition that she will continue to need treatment for to some degree for the rest of her life.
Rachel describes her partner James and her family as having been amazing whilst she was ill and during her recovery – a very difficult time both physically and emotionally. ‘On one hand, I was so happy to be slowly recovering, but as I started to recover, I started to understand and think more about what had happened which led to some symptoms of post sepsis syndrome and PTSD,’ she says.
‘My emotions were up and down like a yoyo, and it must have been very demanding and tiring for James – trying to manage day to day life and also look after and support me. He was understanding, kind, patient, caring and always there when I needed him to be.’ Her family were also very supportive, helping with meals and cleaning and checking in regularly to see how Rachel was. She remembers getting a big boost whilst in ICU when her mum, unable to come and see Rachel in person, delivered a care package via the staff. She had bought some of Rachel’s favourite snacks and cosy pyjamas and socks that she could use whilst in hospital.
Rachel’s employers were very understanding and gave her the space and time that she needed to recover. She returned to work on reduced hours around four months after being discharged from hospital and they continue to be accommodating and understanding of her ongoing health problems. Rachel describes this as having made a very stressful situation much easier to manage.
Visits to see the critical care team after she was discharged enabled her to talk about her experiences to try to make sense of what happened. With a lot that she was unable to remember or understand, it was important to Rachel to be able to make sense of her experiences. She was also able to visit the intensive care unit, to see the bay that she had stayed in and meet some of the staff who looked after her. To help, the critical care outreach worker also wrote Rachel an ICU diary – something that is usually only done for patients who are on a ventilator in intensive care. Due to Rachel’s confusion and lack of memory of her stay, they kindly created a diary from the nurses and doctors’ notes after her discharge. Rachel found this very helpful as it allowed her to see the sequence of events, and helped to relieve some of the distress caused by her lack of memory.
During the meetings with the critical care outreach worker, post sepsis syndrome was also discussed. Rachel had been dealing with things at home like losing hair, brain fog, fatigue, anxiety and flash backs. She hadn’t realised that these could have been related to the sepsis that she was recovering from. She found it helpful to know why she might be experiencing the things that she was and Anna (the critical care outreach worker) signposted Rachel to further help.
‘I feel extremely lucky to have had the outcome I have,’ she says. ‘Just to survive would have been a good outcome but to be as I am now is extremely lucky. I honestly believe that this is partly because sepsis was on the radar as soon as I was admitted to hospital and that it was acted upon. Overall, I feel grateful for my outcome and for the support I have received from my partner, my family and the NHS.’
Rachel used information from Sepsis Research FEAT when she was recovering and found it very beneficial. She hopes that by telling her story she can help to raise awareness of sepsis for others and that it might serve as a positive story for others who may be dealing with or recovering from sepsis. ‘I know myself that times can feel very dark while going through sepsis, but that you can get through it.’
Rachel concludes, ‘It is so important to be aware of the signs and symptoms of sepsis and never be afraid or embarrassed to ask if you suspect you might be suffering from sepsis. It might just save your life!’