Post-Sepsis Syndrome: Sepsis Survivor Reveals Infection Caused Memory Loss And Altered Personality

'Nobody knows what sepsis survivors are going through aside from other survivors.'

If you’ve survived sepsis, it goes without saying you’re one of the lucky ones. Every year in the UK there are 150,000 cases of sepsis, a life-threatening infection that attacks the organs, resulting in a staggering 44,000 deaths.

Paul Cornhill, from Tamworth, survived a perforated intestine and sepsis. He spent days in intensive care and at one point doctors told his wife it was unlikely he’d pull through.

Paul lived to tell the tale but his story didn’t stop there - and it certainly hasn’t been all rainbows and butterflies since. Following his near-death experience, the 57-year-old had to deal with extreme fatigue, memory loss and an altered personality - long-term effects of sepsis which are not often publicly addressed.

To coincide with World Sepsis Day, Paul has shared his story and his struggles with post-sepsis syndrome in the hope it’ll help other survivors feel less alone.

Paul experienced septic shock in 2012.
Paul Cornhill
Paul experienced septic shock in 2012.

Paul suffered relentless stomach pain in August 2012, which caused him to take time off work. At first, he thought nothing of it, but things took a turn for the worse one Wednesday afternoon when he was suddenly left in excruciating pain.

His wife Jayne rushed him to A&E at Good Hope Hospital, Sutton Coldfield, where he was admitted with suspected gall stones.

“I spent about 10-13 days there, on the ward, while doctors investigated what was wrong,” the project manager told HuffPost UK. “And then one day they must have realised I had a perforated intestine, so they rushed me down to surgery.”

It’s thought the perforation happened as a result of an operation Paul had had when he was 11 years old for an abdominal cyst.

“They [the medical staff] think the intestine had adhered to some scar tissue and that had caused the side of the intestine to break down,” he explained.

The next part of the story is very hazy for Paul. However his wife Jayne, 49, has since helped him fill in the blanks.

Surgery confirmed that Paul had a perforated intestine and had sepsis as a result. He came close to organ failure so doctors tried to put him on dialysis to clean his blood, which failed twice.

“I lost about three pints of blood so they gave me a blood transfusion. At that point, I guess the fresh blood is what turned me around,” he explained.

When all of this was happening, Jayne was told by doctors that it was very unlikely her husband would survive.

Thankfully, he did. But he woke up a changed man.

Paul volunteering at the London 2012 Olympics, just weeks before he went into septic shock.
Paul Cornhill
Paul volunteering at the London 2012 Olympics, just weeks before he went into septic shock.

After surgery, Paul was sent to an intensive care unit, where he didn’t stir for a further 10 days.

“I gradually woke up and it wasn’t really until I’d been awake for a while that I had it all explained to me and the fact that I’d had septic shock,” he said.

“I didn’t really have a full understanding of what had happened until just over a year afterwards,” he said.

Like many people, Paul had never heard of sepsis before. “I had heard of septicaemia and blood poisoning, and I think a lot of people had, but I had no idea what sepsis was,” he explained.

Sepsis is a rare but very dangerous condition where infection gets into the blood stream, causing an extreme reaction which attacks the vital organs. As such, early detection is vital.

It can occur following chest or water infections, problems in the abdomen like burst ulcers, or simple skin injuries like cuts and bites, according to The Sepsis Trust.

Doctors and nurses were able to fill Paul in on what sepsis was, but nobody could quite predict how life post-sepsis would change for him.

When Paul first came around after surgery, he was regularly experiencing hallucinations: “Mine weren’t visual, they were audial. I still can’t get my head around it.”

Describing what he experienced, he recalled: “You know those CD machines they have in shops where you can create musical selections - and they’re often this weird and wacky music? Well in my case, it wasn’t weird music, it was comedy sketches and dialogue from movies with sound effects.

“So there would be an adventure film with an airplane sound effect in the background and two people having a conversation, or three comedy actors doing a skit.

“And that was literally all in my head, made up, but it was one after the other. One day it would be what sounded like 1930s movies and the next day it would be a 1950s comedy series.”

He added: “I thought they had a CD machine in ICU, but obviously they didn’t.

“I had a period about 18 months to two years afterwards where I needed to talk to someone about it.”

Paul also suffered extreme fatigue and memory issues, which he still experiences on and off today.

Discussing the latter, he explained: “You know when you can’t find a word? I’ve had that issue the same as everybody else. But it was happening near enough all the time.”

He said exercise helped him fight the fatigue eventually, however it was only last year that he began to finally feel 100%. He’s also been eating more blueberries, which he believes helped get his memory back on track.

Paul also noticed that his tastes have changed since his near-death experience (“I used to drink a lot of coffee and don’t touch it anymore”) but more bizarrely, his personality seems different. “I can’t put my finger on it, but I do feel like I’ve changed,” he said.

Half of sepsis survivors are affected by a condition called post-sepsis syndrome (PSS), according to the Sepsis Alliance. This is an umbrella term which describes the physical and psychological long-term effects of the illness, such as insomnia, vivid hallucinations, panic attacks, extreme fatigue, poor concentration, muscle and joint pain and decreased cognitive functioning.

These problems typically last for six to 18 months, but in some cases can go on for years.

The Sepsis Trust recognises that most people are unaware of post-sepsis syndrome, including employers, healthcare professionals and family and friends, which can make it even more alienating for sepsis survivors.

“More often than not the person experiencing PSS will look well and it may be some time since their sepsis,” its support page reads. “Expectations will be that you should be better now. This can make it a very lonely place for someone who is experiencing PSS and some people even start to doubt themselves and wonder if they are imagining all these problems.”

Paul had been warned about post-sepsis syndrome by his doctors, who he said were incredibly supportive, but it took him a long time to fully come to grips with what was happening to him.

Now, he’s calling for more research into, and greater awareness of, PSS and how it affects people’s lives. He’s also urged fellow survivors to speak about their experiences to raise awareness and help others feel less isolated.

“The problem is that nobody knows what sepsis survivors are going through aside from other survivors,” he said.

“My message this World Sepsis Day would be to ‘pass it on’. It’s important for sepsis survivors to get involved and share their experiences face-to-face.”