Fitness instructor and mother-of-three Katie Tinkler recalls shouting “See you later” to her 16-year-old daughter Isobel as she was being wheeled into an ambulance on a stretcher after collapsing on the bathroom floor of her home on a Saturday morning.
But Katie wouldn’t be home later, nor would she be back in time to guide Isobel through her GCSE exams the following week.
In fact, shortly after being transferred to the hospital, Katie was put into an induced coma, from which she would not emerge until three weeks later.
All the while, her life hung in the balance as her body battled the effects of sepsis, a potentially fatal illness that occurs when the immune system overreacts to an infection — in Katie’s case, pneumonia.
Katie Tinkler developed sepsis seven years ago and is still living with the consequences.
Katie, who was in top form, was rushed to hospital where she was put into an induced coma, from which she would not emerge until three weeks later.
Four days before her collapse, “super-fit” Katie, who had been teaching 13 fitness classes a week, visited her GP with “shaking, severe muscle pain and a general feeling of being unwell”.
“My GP told me to go home and drink Lucozade,” she says, and, reassured, she did. It’s advice she wishes she had ignored.
Not only because she could have avoided spending three months in hospital, but also because Katie, like thousands of others in the UK, still suffers from life-changing after-effects, known as post-epis syndrome, seven years on.
The syndrome causes long-term effects that can be physical (from profound fatigue and joint or muscle pain to hair and tooth loss); cognitive (such as mental confusion and memory problems); and psychological (sleep problems, flashbacks and nightmares are not uncommon).
According to the Sepsis Foundation UK, post-epsis syndrome affects around 40 per cent of survivors – or 80,000 people a year. For some people, symptoms persist for between six and 18 months. Others, like Katie, suffer for much longer.
“Physically and mentally, I’m a different person,” she says. “I used to be always on the go. I was the life of the party and would sign up for any charity triathlon there was.
“On holiday I used to go skiing or coasteering. Now I can’t do that anymore. All I can do is walk, at a slow pace that is frustrating for others.” He also suffers from permanent fatigue and mental confusion.
UK Sepsis Trust is calling for people affected by post-sepsis syndrome to be given access to the type of rehabilitation available to people with long Covid.
Sepsis can have a rapid and devastating impact on anyone, regardless of their physical condition. “One doctor described it to me as if a nuclear bomb of inflammation had gone off in my body,” says Katie.
It was her husband Simon, 53, a management consultant, who called an ambulance when he found Katie slipping in and out of consciousness on the bathroom floor of their Surrey home on a Saturday morning in May 2017.
She recalls: ‘At the hospital, I was not expected to survive the day because my organs were shutting down.’
In the UK, around 245,000 people a year develop sepsis. The disease is triggered by an infection, usually a chest or urinary tract infection. Babies, older people or people with conditions such as diabetes that make them more susceptible to infections are most at risk.
But “it can affect anyone, it’s completely indiscriminate,” says Dr Ron Daniels, a consultant in intensive care at University Hospitals Birmingham NHS Trust and chief executive of The UK Sepsis Trust.
In sepsis, the immune system attacks not only the invading germs but also the body’s own tissues, producing chemicals called cytokines that trigger widespread inflammation.
If left untreated, it can progress to septic shock, in which blood flow to the extremities decreases as the body struggles to maintain blood supply to vital organs and blood pressure plummets. In its early stages, it can cause chills, aches and pains “and can be mistaken for the flu,” says Dr. Daniels.
Early detection is vital. Every hour of delay in diagnosis increases the risk of dying from sepsis by 1 to 2 percent, according to estimates by The UK Sepsis Trust.
In the UK, five people die every hour from the disease, but prompt treatment with intravenous antibiotics (and fluids to raise blood pressure) can save lives.
Former MP Craig Mackinlay, 57, received a warm welcome when he returned to Parliament in May, having lost his hands and feet after developing sepsis in September last year.
The symptoms of post-sepsis syndrome are thought to be due to the after-effects of inflammation and reduced blood flow to certain regions caused by sepsis.
But the after-effects suffered by survivors can be life-changing. Former MP Craig Mackinlay, 57, received a warm welcome when he returned to parliament in May, having lost his hands and feet after developing sepsis in September last year.
He also suffered damage to his gum tissue, which left him with loose teeth, as well as to his ears and face.
Craig decided to step down as MP in part, he said, because “it would be difficult to maintain the 70- to 80-hour work weeks that were the norm before my illness.”
But post-sepsis syndrome is affecting more and more people as sepsis becomes increasingly common. This is partly due to an ageing population, but also to the proliferation of antibiotic-resistant bacteria, meaning infections can persist and give more opportunities for sepsis to strike.
“The symptoms of post-sepsis syndrome are thought to be due to the after-effects of inflammation and reduced blood flow to certain regions caused by sepsis,” says Dr. Daniels.
“For example, reduced blood flow to hair follicles can lead to hair loss. Sepsis can also be associated with changes in the immune system that last for years, putting people at greater risk of infections. This may be because sepsis has an autoimmune component, so the immune system is primed to react abnormally.”
One in three patients with sepsis is readmitted to the hospital with an infection within 90 days of discharge, according to a study published in the journal Critical Care Medicine in 2015.
“Post-epsis syndrome can be totally debilitating,” says Dr. Daniels. “The mental confusion alone can be severe enough to make it difficult for someone to return to work.” In fact, some people want post-epsis syndrome to be called “protracted sepsis” to try to draw attention to how debilitating it can be, he explains.
Indeed, a review published in the journal Infection and Drug Resistance last year highlighted “many similarities” between the symptoms of post-episodic syndrome and those of long COVID. “This raises the question of whether they should be considered separate entities or whether they represent the same condition,” it said.
But while there are more than 100 designated clinics in England to treat long Covid patients, staffed by occupational health therapists, physiotherapists and specialist nurses, there is no such service for those with post-episal syndrome.
Dr Daniels says: ‘Usually the best thing that happens is for a well-meaning nurse to invite patients who have survived sepsis to come in on a Saturday morning to talk about how they are doing, but it’s not enough.
“We have seen a lot of resources being put towards people who survived Covid but developed long-term problems, but not towards those who survived sepsis. It seems unfair that those who survive one virus get the help they need, but those who survive another do not.”
Ideally, there would be similar clinics offering different services for those suffering from post-epis syndrome, he adds.
Dr Daniels said: “It’s a complicated picture as needs vary from person to person. Some need counselling, others physiotherapy or dietary advice (as the tissue breakdown that can occur during sepsis means patients need a high protein diet, for example). But at the moment there’s nothing for them. They’re left to fend for themselves.”
After Katie emerged from her coma (which had reduced the body’s demand for oxygen, thus protecting her organs), she had to learn to talk, eat and walk again. She left the hospital barely able to care for herself. “I had two visits to physical therapy at home and that was it,” she says.
Katie left the hospital barely able to care for herself. She had to learn to talk, eat and walk again.
Friends raised nearly £1,000 to fund 12 private physiotherapy sessions and Simon took three months off work to care for her. “For a long time, I could only take my daughter to school in my pyjamas, in the car, and had to go straight back to bed when I got home,” says Katie.
On top of everything else, sepsis has caused her heart and kidney problems that require regular monitoring. She has been admitted to hospital “about 20 times” since 2017, each time with a different infection. One last year forced her to amputate her little finger.
But her biggest fear is suffering from sepsis again, a risk that increases slightly once she has contracted it. “Last time I was strong, this time I’m not sure I can fight it off,” she says.
To avoid infections that could trigger it, family vacations are usually done by car rather than by plane. And friends know not to visit them “even if they have a cold.”
Katie celebrated her 50th birthday with a party and is determined to make the most of what she has. But there is no sugarcoating what her life has become. “I have good days and bad days,” she says. “My friends have learned that while I would love to accept their invitation to a get-together, I can’t predict whether I will be well enough to go there.
“When I left the hospital I thought, ‘Great, I don’t have sepsis.’ But after all these years, the effects are still with me.”
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