Following a routine surgery for endometriosis, Emma Vehviläinen experienced pain so immense that she was unable to get out of bed. If she hadn’t arrived at A&E when she did, Emma was told by doctors that she might have lost her life later that day.
Emma is now sharing her sepsis story to urge people to advocate for themselves if they are presenting with sepsis symptoms and to take advantage of the support offered by UKST to aid in their sepsis recovery.
Late last year, Emma underwent a routine surgery for endometriosis. Despite having a high pain-tolerance, nothing could have prepared Emma for the debilitating pain she experienced upon returning home: “It was my first surgery, so of course I didn’t know what was normal in terms of pain… by the second or third day my pain was immense.” Thankfully, Emma was able to sense that something wasn’t right: “I was thinking, ‘is this the norm? Or is this one of these warning signs?’”
After reporting her symptoms, doctors instructed Emma to take her temperature, which read at 34-35 degrees celsius. Doctors believed the temperature-monitor might have been broken, so she bought another one which returned the same reading. Doctors subsequently recommended that Emma take more painkillers and to ‘see how things would go’. The next day, Emma couldn’t stand up.
“The pain had gotten to the level where I felt like I was barely conscious.”
When asked how she was able to differentiate this pain from her endometriosis, Emma believed it was fairly obvious: “This pain was so severe and it increased so quickly to the point where I found it difficult to stand up, to sit down, to eat… I had never experienced pain at that level. It was pretty easy to distinguish.”
Beyond just her pain and high temperature, Emma also experienced many of the other common sepsis symptoms: “Other symptoms included very severe physical weakness, loss of appetite, this fluctuation between feeling warm and cold, and how quickly those changes happened. Psychologically I was feeling very disoriented, foggy, forgetful, like I was losing myself. That was when I decided that I needed to go to A&E.”
After being “carried” to A&E, doctors discovered that an infection had developed in Emma’s stomach that had spread into her bloodstream: “I was diagnosed with sepsis and they told me very directly that I was lucky to be alive.”
If it wasn’t for Emma reading into her symptoms and seeking urgent medical attention when she did, the result could have been fatal.
“If I hadn’t come in right at that moment… they told me I could have died later that day. I was in a complete state of shock. In that moment, you just can’t process it.”
Emma was rushed into life-saving surgery to contain the infection: “That’s really when a horrible ordeal started… I spent about a week in the ICU in a critical state. I was cordoned off into my own area, which I later learned was for patients at high-risk of infection.”
Luckily, the surgery was a success and Emma was able to gradually make a recovery: “There were still some scares in the beginning. But then I eventually became more stable.” After stabilising her vitals, doctors then transferred Emma to a specialist hospital, where she underwent three more surgeries and a host of other procedures.
A month later, Emma was finally told she could return home: “When the day came I was so happy I couldn’t stop crying.” However, Emma was keen to stress that the road to recovery after surgery is far from an easy one: “Really, the ordeal didn’t stop even after I left the hospital. Physically I still experienced quite a lot of pain. I think a lot of people think that when you get home from the hospital, you’re all good, it’s over. But the physical recovery, it takes so long, it’s not over.”
More than just the physical recovery, Emma also observed that she experienced psychological after-effects following her surgeries that made her recovery even more challenging: “After a few days, I definitely started to experience some anxiety. Every little pang or pain immediately brought me back to the start of that journey.”
Around 40% of people who develop sepsis are estimated to suffer physical, cognitive, and/or psychological after effects. For most people, these effects will only last a few weeks, but others can face a long road to recovery and develop Post Sepsis Syndrome (PSS). Thankfully, whilst still in hospital, Emma sought psychological support to help her deal with her anxiety: “I’m really happy that whilst I was still in the hospital they offered psychiatric help and I decided to continue that immediately when I got home. It helped immensely when returning… and that anxiety went away pretty quickly.”
Emma is therefore sharing her sepsis story to emphasise to sepsis inpatients and outpatients the need to seek psychological support when making a recovery:
“Seek mental health support as early as possible. It’s easy to fall into this trap of just focusing on physically recovering. But the surgeries, the near-death experience, the severity of the condition, it hangs over you, and so it’s important to start to emotionally process that as early as possible.”
UKST provides a helpline, with access to trained support nurses who can discuss sepsis recovery, and also offers a number of support groups nationwide – these are informal meetings open to anyone affected by sepsis.
Emma also highlighted the important role that family and friends can play in aiding a loved one’s recovery from sepsis: “I would advise friends and family to be patient and to be a cheerleader for them. It was hard at the beginning to motivate myself and to have others motivating you helped so much.”
When asked what other advice she would like to pass-on to those affected by sepsis, Emma strongly urged inpatients to advocate for themselves and to trust their instincts if they truly feel something isn’t right: “I just want others to know to really listen to their own body and to support and advocate for themselves if they truly feel ‘this is not normal, this is too much pain’. Even if your doctor is telling you ‘just take more pain medication’, to push past that, to really seek that support, because if I had waited… who knows what my outcome could have been.”
Following a recent NHS announcement, seriously-ill patients across participating hospitals will soon be able to take advantage of ‘Martha’s Rule’: a new system being rolled out to provide seriously-ill patients with ease of access to a second medical opinion. Emma is therefore also sharing her sepsis story to encourage those with sepsis symptoms, especially women, to trust their instincts and seek a second medical opinion if necessary.
“I strongly believe that this was preventable what happened to me, and I just want other people to know who are going through surgeries, to know that they should advocate for themselves, especially as a woman.”
Research shows that women are much more likely to be wrongly assessed and misdiagnosed for critical health conditions, such as heart attacks, by medical professionals than men. With 48,000 people dying of sepsis in the UK every year, it’s therefore critical for those presenting with sepsis symptoms to advocate for themselves and seek a second medical opinion if they truly feel something isn’t right.
