Originally from Greenock near Glasgow, 31-year-old Jennifer Gavin is a change manager who has lived in London for the past five and a half years. She describes her main hobbies as enjoying London life and socialising, travelling wherever she can and playing netball. Prior to becoming ill with sepsis in September 2024, she was playing netball five times per week and describes it as ‘a big shock and change to get so sick very quickly’.
Jennifer has very kindly shared her story with us here:
This is a long one…!
I woke up on 5th September 2024 with a sore throat – nothing too out of the ordinary, since my friends and colleagues had previously been sick with a generic London bug. I was flying to Portugal that evening to celebrate my 31st birthday so I wasn’t going to let it ruin my day. I took some painkillers and made my way to the airport. By the time I landed in Portugal I had full body aches and generally felt run down. I thought that I possibly had the flu and was annoyed that this might ruin my birthday weekend, but tried to remain positive as this was the first holiday that me and my sister had been on together in years.
Unfortunately, most of the weekend was then spent in the room in bed. I was feverish and shivering, freezing cold and then boiling hot, vomiting and had a general feeling of soreness everywhere. I spent my 31st birthday asleep on-and-off, willing myself to fight this bug. My mum has actually had sepsis before and so my sister and I did originally question whether this was perhaps more serious than we had originally thought. My mum’s main symptoms had included the aggressive shivering but as I was still passing urine and didn’t have the majority of the others symptoms that are widely recognised as being a sign of sepsis, it seemed more likely that it was the flu (or so we thought).
I arrived back home in London on the Monday night and by Tuesday morning I was seeing a GP. My sense is that the GP just saw a young, healthy-looking person and misdiagnosed me as having flu – even with a temperature of 39 and a resting heart rate of 120 – and sent me away to rest and recover. I have Crohn’s Disease and I am on biologic medication1 to treat this which can cause immunosuppression. I’m aware being immunocompromised can cause infections to get worse, which is the reason I went to the doctor in the first place and why I was upset that they didn’t offer a blood test. I spent the next couple of days dealing with extreme fevers and discomfort.
On Friday 13th September (ironically World Sepsis Awareness Day!) I was drinking water when I noticed how full I felt and that I was no longer hungry or thirsty. As I wasn’t getting any better, something compelled me to ring 111. Because I had a persistent fever the lovely 111 operator arranged for me to go to A&E at the Chelsea and Westminster Hospital. When I arrived, I had my vitals checked and was triaged straight through. Unfortunately, it was a Friday evening so I wasn’t initially taken seriously until – around five hours after I was admitted to A&E – I explained that my heart was pounding and that I was burning hot. I was rushed to resus where the fight began to get control of the situation. Doctors disagreed about what was wrong – from gallstones to a perforated bowel, to hepatitis. Looking back, it’s clear that the multiple diagnoses were as a result of my organs becoming inflamed as sepsis developed.
I was admitted to a medical ward for observation where they eventually discovered that I had severe pneumonia in both lungs. The cause of the pneumonia and infection was still unknown though so I was being treated with generic but powerful antibiotics which sadly weren’t controlling the bug. I was hallucinating to the point that I could recall the race, gender and outfits of people I mistakenly believed were in the room with me. Paracetamol was not bringing down my temperature or my heart rate, which was now 160. During the night Doctors kept coming in for me to try different oxygen masks, but my breathing was getting worse and my oxygen levels were dropping as I was becoming more and more tired. It was then decided that I would be taken to ICU and placed in an intubated coma. Initially this was only supposed to be for a couple of days but I ended up spending six days ventilated. On day three of my coma, they identified the bacteria that had caused my infection. Fusobacterium Necrophorum – which is usually found in the back of the throat – had got into both my lungs and caused multiple abscesses (the largest measuring 20mm), which then caused severe pneumonia. I spent ten days in ICU and was then moved to a ward where unfortunately I became septic again and needed to be moved back up to High Dependency. Whilst in High Dependency, a chest scan highlighted pleural effusion, and a chest drain was fitted to try and drain three litres of fluid surrounding my lungs. Thanks to my healthcare benefit at work, I was then moved to the private London Bridge hospital for my last week as an inpatient where my antibiotics were changed and I made a positive turn for the better. Throughout my stay no one ever said that I had sepsis – they would use phrases like ‘She is septic’ – but they never focused on sepsis as my main cause for concern or diagnosis or explained what this meant. It was only when I was read my discharge notes weeks later that I noticed the diagnosis as sepsis and understood how ill I had actually been.
I was initially in disbelief at how seriously sick I had been. I knew I was obviously extremely ill, but being 31, fit and active it was scary to imagine that I was in a life-threatening situation. The A&E doctor told me that I was lucky I came in when I did as I probably wouldn’t have survived the night, which made me very scared but grateful finally to be in the place to get help. I was also extremely disappointed that I had done everything I could and sought help but was told by my GP to rest and sleep it off. If I hadn’t advocated for myself, I would not be here today. Whilst in the hospital, I found it impossible to rest and felt terrorised the entire six days I was in the coma due to the hallucinations and fever dreams caused by my elevated temperature. When I woke up, I was then scared and anxious about falling back asleep just in case I didn’t wake up again. Looking back now it’s obvious I was suffering from PTSD and shock but at the time I felt I was treated as just being anxious. As I kept saying, you do realise that I have just woken from a coma, with no clue what is going on – of course I am anxious!
My parents flew down to London from Glasgow early on the morning of Saturday 14th September. Looking back, I think they were probably also in denial as to how sick I was, as I was smiling and chatting and being generally responsive when they visited me in the medical ward. My mum said that when I text her saying I was going to ICU it was the worst message she’d ever received as she felt as if I was saying goodbye to her. They both raced across London to be able to say goodbye to me before I was placed in the coma, which I will be forever grateful for. They then spent six days waiting for me to wake up and for the moments when I would stir as the drugs keeping me asleep would wear off. Mum said she would ask if I could hear her and I would nod my head. She would tell me how loved I was and to keep fighting and my dad would try and help give me facts, reminding me what day it was and what was happening. If I’m honest I don’t think they have yet fully recovered or processed any of this. My parents didn’t want my sister to see me the way that I was, and so she stayed in Glasgow throughout and flew down the day before I woke up. We are very close, and she said she spent the entire time in shock and worry, staring into space and crying. She felt guilty that she hadn’t got help when we were in Portugal and felt helpless being so far away with nothing to do but wait for news.
I was in hospital for a total of three weeks: ten days in ICU – six of them in a ventilated coma – and four days in HDU at the Chelsea and Westminster and then seven days in the private hospital. I was treated with IV and oral antibiotics and had a chest drain. I am told that I should be fully recovered by March/April 2025 (seven months after I became ill with sepsis) but that further scans will establish this for sure. My last scan highlighted evidence of everything that had taken place shown by scarring on my lungs, but this shouldn’t have a permanent effect on my life which I am extremely grateful for.
In terms of my treatment and recovery, my family were my rock. They were at my side from 9am-10pm every day for three weeks, even when all I could do was stare into space. Having them there made me feel safe. I have also recently started EMDR therapy for PTSD which is helping me process a lot of my worst memories from the hospital and my stay. And as I mentioned before, nobody told me that I had sepsis when I was in hospital, nor did anyone mention that I had sepsis the second time when I moved wards. Reading my discharge notes helped me to realise how serious my condition had been and how lucky I was to survive and to walk away from all of this with no life-changing injuries. They also helped paint a picture of what was happening when I lost six days. Generally, I try to take my mind off things – I became obsessed with things that would take me out of my head, like painting by numbers. I do allow myself to feel though – giving myself space to be upset and angry at the situation that I was in and allowing myself to feel pity for me. I like to be positive and look on the bright side of things but being realistic that I was given a bad hand helped me get a grasp on reality and regulate my emotions so that I could then start building up slowly but surely every day. Finally, reading and connecting with other people who had gone through similar things has helped – I had never heard of sepsis affecting someone like myself. So, to read stories of people who had gone through similar things or worse and who were now thriving gave me hope that I wouldn’t always feel awful.
Whilst recovering at home I also reached out to the GP surgery that initially saw me, to make them aware of the situation that I had found myself in. I thought it was important that they knew and could learn from my story, especially within the young and immunocompromised groups that attend the surgery. The doctor I had met on Tuesday 10th September rang me and expressed how sorry he was that this had happened to me and how he and the practice will learn from this in the future. He even said he will speak about my case specifically in one of their ‘Extraordinary Cases’ meetings, where they try to learn from past experiences and improve going forward. I don’t blame him, and I understand why he assumed it was viral, but I really appreciated him taking the time to re-evaluate his diagnosis. He has since offered to speak to me about the day and his reasonings behind why he triaged it the way he did. It’s so important to have these conversations and I hope that this will stop others attending the surgery going through the same late diagnosis and experiences that I had to.
I was very scared and hesitant about my future when I was diagnosed. I almost didn’t want to plan anything or see anyone because I didn’t want to jinx myself. Being in pain constantly for three weeks and living a rollercoaster whilst in hospital meant I could never really believe when things were going well and I was always expecting the next bad thing. I kept saying that I was lucky to be here, but with tears in my eyes – all I wanted to say was how unlucky I felt I had been in the first place!
As I tell my story now, 13 weeks on, I feel positive and extremely grateful. I know I will wake up every day and think about what happened, but I look at it and at all my scars with pride – as something that I survived. I feel very fortunate and lucky and no longer feel the same sadness. I have come to accept that things can’t be changed. I remember when I first went out for dinner with my friends after everything happened and I felt that warm glow of happiness inside me over something so mundane. I hope I never lose that appreciation of life and the little things.
Whilst I was in the coma, a nurse researcher came in to take a blood sample for the Edinburgh University GenOMICC study. When I woke up my parents told me that they had consented on my behalf. I then got in contact with the team there to say that I also consented. That’s how I first found out about the research taking place, which led me to the Sepsis Research FEAT website.
Reading about other people’s stories on the charity’s website gives a sense of normality to an incredibly abnormal situation. I’m so sad that others have had to go through this but feel very fortunate to have people tell me things get better and to hear about their stories.
As I mentioned at the start, a few years ago my mum had sepsis as the result of a UTI. She was on holiday in Malta and placed in a high dependency unit. She wasn’t put into a coma and was luckily treated quickly with the right antibiotics which meant her recovery was a lot quicker and smoother than mine. My own Mum had sepsis, and I still did not realise the symptoms that I had were all leading me to the same fate. I think it’s so important to speak about these things, especially symptoms that may not be on the SEPSIS slogan as these can all be mistaken for other ailments. Being young and fit I would never have thought I’d have become so seriously ill so rapidly – I want to raise awareness amongst young people especially.
My one final message to others would be to trust your instincts and advocate for yourself. It’s better to look silly asking for a second opinion than to lose your life. And allow yourself to feel sad and grieve the person that you were before this happened to you, they will come back stronger than before!
Charity Comment:
This very powerful and thoughtful account of Jennifer’s contains multiple important messages.
The first is that sepsis can affect somebody who is young, fit and healthy. It is an indiscriminate condition that could affect any of us at any time and is something that everyone should be aware of, particularly in the context of infection.
Another very valuable point that Jennifer raises is the importance of knowing that, should symptoms persist or worsen, you should re-present once you have seen a clinician and been reassured. Sepsis often develops quickly and can progress rapidly. Whilst you may initially have presented with the symptoms of one condition, sepsis may have developed in the interim and it is therefore crucial to seek medical help again and have the confidence to ask whether what you are experiencing could be sepsis.
Jennifer’s understanding that the difficulty of diagnosing sepsis, even by the best trained medical professionals, arises partly from the fact that it can affect multiple organs in the body, with widespread inflammation, is absolutely accurate and is important to remember in the context of sepsis diagnosis.
Finally, her recommendation that others have the confidence to advocate for themselves, or if they can’t that someone else advocates for a friend, loved one or child on their behalf, is extremely important. Asking whether what is being experienced is sepsis is, as she says, never a silly question.
Sepsis Research FEAT is grateful to Jennifer’s parents for their foresight in agreeing to her being part of the University of Edinburgh GenOMICC study that the charity supports. We are also grateful to Jennifer for her own subsequent consent and follow-up. It is only through research such as the study being undertaken by GenOMICC that we can hope for better diagnosis and treatment in the future for sepsis patients and the prospect of improved outcomes, and higher survival rates. We are very grateful indeed to Jennifer for her tremendous support for this charity.