The twelve months from July 2022 were life-changing for Patricia from Manchester. In her late fifties she retired, subsequently became gravely ill with sepsis and went on to spend three months over the summer and into the autumn in hospital. A year after suffering from sepsis and having learned to walk again, she married Billy, her partner of 34 years and father of their daughter Nicole. Patricia explains more here.
I retired from the civil service at the beginning of July 2022 after a career spanning some 40 years. In that time I had enjoyed very good health with no notable work absence. I was looking forward to more time with my family and friends, to travelling and to making my home and garden a place of joy and a refuge from daily stressors.
But within weeks of retirement I developed a sore throat with painful ulcers. I wasn’t concerned and it lasted for about two weeks. Shortly afterwards though I started to feel very tired and found I was getting out of bed only to fall asleep again on the settee. After a few days without improvement my then-partner Billy called NHS 111. They asked a number of questions but without recognising any signs of sepsis they advised me to get a GP appointment which I was able to arrange on an emergency basis for the following day. On the morning of the appointment I came downstairs to get some tablets for a headache and fell down the last two steps. I was hallucinating and I was really too weak to walk or to make it to my appointment. My daughter Nicole was so concerned that she called an ambulance.
When the ambulance arrived the paramedics confirmed that I had very low blood pressure and needed hospital care. From where we live I had a choice of going to either Tameside hospital or to Manchester Royal Infirmary (MRI). My now-husband Billy chose Manchester Royal Infirmary and I’m really glad that he did as I found out later that they had a piece of equipment not available at Tameside. By this time my right hand was aching, I couldn’t hold my head up and due to our spiral stairs I had to shuffle down on my bottom before being transferred to the ambulance.
I remember the journey to hospital and being admitted. Billy was allowed to accompany me in the ambulance but our daughter Nicole who was then 26 was left at home distraught.
A matter of hours after I was admitted Billy was invited into a private room for an update. He was completely numb when the doctor told him that I had terminal cancer, that I was too weak for treatment and that I was going to die. After taking some 15 minutes to pull himself together he was able to rejoin me to witness the doctor giving me the same terminal diagnosis. Thankfully I can’t now remember that because shortly afterwards I was placed into an induced coma in which I remained for several weeks. During that period doctors sought a second opinion and did blood tests which quickly ruled out cancer and identified the fact that I had sepsis and had gone into septic shock, which finally allowed intense treatment for that to start. I was not aware of what was wrong with me until I emerged from my induced coma. At that point my reaction was quite mooted – I just wanted to focus on my recovery and get home. My family’s reaction was one of total shock and determination to help with my recovery. Family from across the world rallied round to support me in any way they could.
When I was eventually brought out of the coma I had lost more than a stone in weight. I was completely paralysed and I remained on life support as neither my liver nor kidneys were functioning. Sepsis had ravaged my body and although infection markers were coming down progress was slow. It was decided that I should have a tracheostomy to support my breathing.
As weeks became months my body began to fight back. From total paralysis I slowly began to regain movement, starting with just two fingers. Billy and Nicole were at my bedside daily and I saved my ability to move my fingers so I could wave goodbye to them as they left. It was one of many emotional moments, another huge one being when my kidneys started to function again. Billy said he had never been so happy to see a bag of wee.
Slowly but surely the number of drugs and life support machines were withdrawn. It was another huge moment when I was able to breathe unaided as it meant I could be moved from the Intensive Care Unit onto a High Dependency Unit (HDU). By now the sepsis was under control and the focus of my care turned to rehabilitation. My muscles had wasted away, I had difficulty swallowing and I couldn’t walk. Despite having been given an electric bed in order to move my position, I had still developed painful pressure sores.
From the HDU I was moved to a ‘normal’ ward, but as I was still unable to walk I struggled in this environment. I was advised to press a buzzer if I needed help but it seemed everyone on the ward was constantly pressing their buzzers. With the help of physiotherapy, my strength was slowly returning though and I started to regain full movement and the ability to walk, albeit with the support of a frame. The next step was intense rehabilitation and I was delighted to be moved to the Devonshire Neuro-Rehabilitation Centre to rebuild my strength. I felt I was getting closer to going home to my family.
At the Devonshire I was further able to recuperate and re-learn how to do things I had always taken for granted – like walking and making a cup of tea. I was soon ready for a home visit which was another emotional step to recovery. Though still very weak I was determined to climb my stairs and demonstrate that I had enough fitness to go home. I begged to be discharged and within two days of my home visit I was allowed home.
In total I had been in hospital care from 31st July to 25th October.
Five weeks later on my birthday and Nicole’s – 30th November – Billy told me that we had been invited to his friend’s 60th birthday celebration. Nicole was really keen that I should get my hair and nails done and have a new outfit. I didn’t really think much of it as I didn’t really expect to know too many people. When I got there I was amazed and somewhat overwhelmed as the entire place was filled with my friends and family – it turned out that it was a surprise party for me!
And eight months after that, on the 8th July 2023, Billy and I were married – cementing our 34 years together.
It’s now a year into my recovery and I’m doing well. I did have to be treated for a narrowed oesophagus caused by all the devices that had been inserted via my windpipe. I am also still taking prescription-strength stomach acid reducing medication. And I have a slightly crooked finger and weakness in my shoulder as reminders. But I know that I am lucky. I am so grateful for the NHS care I received – for the latest medical technology and drugs whilst at the MRI and for the skill and care of all the hospital staff in each of my four treatment wards. Plus the support from all my family, friends and all the fellow patients who helped me through this hugely traumatic time in my life. I think that perhaps my own temperament may also have helped as I am quite pragmatic.
For a long time the doctors were unsure what had caused my sepsis but they finally agreed that it was probably due to the throat infection that I had. Looking back I know that I didn’t realise how ill I was. That, combined with the advice from NHS 111, led to a further 24hrs without treatment. And this in turn contributed to me going into septic shock and to the organ failure and extreme loss of physical condition and weight. I now know that early detection and professional medical support can be key to survival and that sepsis can often be successfully treated with antibiotics if it is caught in good time. If the opportunity for early detection is missed then recovery can be much slower and muscle loss due to a lack of use is almost inevitable. In my case almost all my bodily functions were managed by drugs and machines.
I would like to see improvement in the telephone diagnostic questions asked by the NHS 111 helpline. Over and above that I would say that it is really important to learn about the early symptoms of sepsis. Don’t ignore severe tiredness. Take early action.
If my story can save just one life it is worthwhile.
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Globally sepsis remains one of the least understood medical conditions and can be a challenge for even the best-trained clinicians to spot and treat. Researchers are working tirelessly to provide better diagnosis and treatment and to improve outcomes for sepsis patients worldwide. Amongst other groundbreaking studies into sepsis supported by Sepsis Research FEAT is the GenOMICC study at the University of Edinburgh. Its aim is to identify potential genetic susceptibility to sepsis and other critical illness as well as new specific and potentially life-saving treatments. To find out more visit the Our research partners page on the charity’s website here.