As 2022 began, Will from Gloucestershire had absolutely no reason to think that just days later his previously fit and healthy life would be dramatically and bewilderingly disrupted by sepsis. In the ensuing ten weeks, the 35-year-old Digital Marketer would go on to suffer from multiple complications and to face a challenging road to recovery. Will takes up his story here.
At home one Sunday in late January I started to feel unwell. I felt like I had maybe started to develop a cold or flu as I initially felt very lethargic and had mild chills. COVID was still quite rampant at the time, so I also suspected I may have had contracted that, though tests proved negative.
Within a couple of days, I started to feel a lot worse. I started to lose my appetite and felt more tired and lacklustre.
I took time off work that week which is really out of the norm for me. As that week progressed my initial symptoms became significantly worse. I have always lived a healthy life, with fortunately no prior serious illness, but I started to feel physically the worst I had ever felt. I was nauseous and unable to eat much and then started vomiting, which made it very hard to hold down any fluids, solids or medicine. I had a high temperature and severe chills which led to me shaking uncontrollably and I became very dehydrated.
After a week at home, things escalated when I tried to come down the stairs on my own: I felt very lightheaded and weak and collapsed at the bottom of the stairs.
Thankfully my wife decided to call 111 who – given my prolonged symptoms and no history of any medical issues – instructed an ambulance to come to my house early in the morning. The paramedics consulted an on-call Doctor who instructed me to get to A&E at the Great Western hospital in Swindon. Once I got to the hospital I had numerous blood tests and it was at this point that I was told I would need to be hospitalised as my CRP (C-reactive protein, measured to evaluate levels of inflammation) level on admission was over 350 which was seriously high.
I was admitted and had further tests. It transpired that I had abnormal liver function due to abscesses forming as a result of an infection so I was lucky to have been admitted at this point. However, during my first night of hospitalisation the shaking I had developed at home became progressively worse – at one point I was shaking violently, had a temperature of 42 degrees and my heart rate was nearly 200 bpm. As my condition was declining rapidly I was rushed to the resuscitation ward – there was a fear I could go into cardiac arrest. This was the first time I started to appreciate the severity of the situation as I was still conscious and aware of my surroundings.
In resuscitation I was immediately medicated with IV (intravenous) paracetamol and given fluids to address the temperature and dehydration. Two hours or so later I was stable enough to be moved to ICU and then a gastric ward for recovery. The root cause of the infection wasn’t – and never will be – established despite prolonged and sometimes quite invasive investigation. Due to the nature of the infection, its concentration on my liver, and as the antibiotics ceased to improve my condition, after about four weeks I needed liver drainage to remove the multiple abscesses. (This ultimately meant that from admission to discharge I spent a total of 64 days in hospital.)
I received daily antibiotics and paracetamol for the majority of my stay. For two months I was taking the maximum of eight paracetamol a day – without them my temperature would continue to be elevated above 38 degrees. I had to take the antibiotics intravenously as there was no oral alternative that would sufficiently treat the infection and this was another reason why I had to stay as an in-patient for the length of time I did.
The level of infection on my liver also led to a hepatic vein thrombosis (clot) which would require ongoing anticoagulation treatment as an in and out-patient – after three months of this treatment this subsided thankfully. And I also developed pleural effusion (fluid on the lungs) which only made recovery harder as my breathing and comfort was impacted. I ended up needing to have that drained too.
When I was initially admitted, on-ward visitors were still not allowed due to COVID restrictions (I had to be moved four times due to exposure to COVID). So I personally had little understanding and appreciation of sepsis until much later in my recovery. The diagnosis was initially shared with my wife over the phone. When I was given the all-clear the doctor who ran through my case history was able to share the extent of the sepsis infection and the impact it had had on my body. I was shocked and confused – I have found it difficult and frustrating not to be able to understand what originally caused the sepsis. On the positive side, nothing sinister was identified as a potential cause. In the absence of any explanation as to why or where the sepsis originated from that feeling of confusion is still with me, but I have learnt that it’s not atypical for the cause of sepsis to remain undetermined and the reality is that I couldn’t have done anything different to avoid contracting it
I had always been fortunate that I hadn’t experienced medical issues prior to this, so my family’s reaction was similar to mine I think but with increased concern. As the patient you don’t really appreciate things in real time and your emotions relating to the situation are delayed until later as you are so focused on your treatment. But your family feel that worry and concern immediately. Particularly at the time of my admission, with wards being closed to visitors, the feeling was amplified I think as they couldn’t see how I was physically doing but knew the situation was serious as there was a period where my condition was still worsening despite being in hospital.
After my discharge I continued out-patient treatment with antibiotics and blood thinners. I subsequently became aware of Sepsis Research FEAT through LinkedIn of all places – when someone else was posting about their experience and attached a link to the charity’s website.
I am sharing my story because, whilst it was a horrible experience, if there is any benefit in the wider research or just in helping people to see resonances of their experiences or to understand more about sepsis then that can only be a positive outcome.
I mainly have a sense of appreciation now – bar some residual scaring on my lungs from the infection, I have made a full physical recovery.
But this was a stark reminder to me of the fragility of life despite – on the face of it – being fit and healthy. I was told on discharge that I would likely need a period of three months to fully recover. However, I was able to start a new job that I had planned before falling ill within two weeks of leaving hospital, and a few months after being at my lowest point physically I was able to continue my passion for travel and the outdoors by traveling to Canada to hike around the Canadian Rockies.
When I was in hospital, I would hypothesise about where/why I contracted sepsis or if there was something I could have done differently to avoid it. The more I understand about the condition, and the experience of others, the more it’s apparent that I was someone who was unlucky enough to go through the experience but very lucky in the sense that my outcome was a lot more positive than it is for many other people and their families.
It is really important to be aware of the symptoms of sepsis and if anything feels unusual when you or somebody you know is ill, and they are getting progressively worse, to seek medical attention. I feel there is a tendency for men in particular to disregard symptoms and not to want to seek treatment. I personally have always been the type to try and ‘just get on with it’ despite feeling unwell, and to downplay things. Even during my period of hospitalisation, I felt almost embarrassed telling people the severity of my condition, so most friends and family were and probably still are quite oblivious to that.
The reality is that consistent and prolonged symptoms warrant attention from a medic. One of the most sobering examples of this for me was during my out-patient consultation. I was told directly that had I delayed seeking medical help by another 12-24 hours the outcome would almost certainly have been different. I am so thankful that my wife recognised the severity of my situation and acted.
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Will’s story highlights two very important points: the first is that trusting your instincts when you or someone else experiences illness that feels disproportionately worse than the norm and seeking urgent medical help is vital to getting urgent treatment for sepsis and to ensuring the best possible outcomes. The lack of a clear diagnosis in Will’s case, in terms of identifying a source infection, is also not unusual. Sepsis remains one of the least understood medical conditions and can be a challenge for even the best-trained clinicians to spot and treat. There is an urgent need for more research to improve diagnosis, treatment and 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.