I got a lethal heart infection & nearly died TWICE after my dentist refused me antibiotics – 400,000 others are at risk
WHEN Greg Hutton went to his dentist to have a tooth removed, he never imagined that it could nearly end his life – not once, but twice.
For after a routine visit, the grandfather became so ill that even his baffled doctor could see he was dying.
It took six months, over 35 medical appointments and Greg’s own detective work to get a diagnosis.
He had bacterial endocarditis – a rare and potentially fatal heart infection.
Worse still, he was to get an even rarer form, called fungal endocarditis, a second time, leaving even the medics in disbelief.
Today, aged 64 and medically retired from his job as a schools IT support technician, Greg tells Sun Health: “I feel lucky to be alive.
“I really don’t know how I survived, other than for the brilliance of the medics. It’s like a bad dream.
“Looking back at the months I spent in hospital, it feels like it was someone else living through it, not me.
“I’ve been regularly to dentists throughout my life and I’ve never had any fear of them.
“I just always saw them as basic, routine appointments.”
In May 2017, the keen runner, who lives near Swansea Bay, Wales, visited his private dentist after a filling fell out during a run.
It was replaced but fell out again several months later. The dentist recommended removing his tooth, which had broken at the back.
Greg flagged what his dental notes already said – that in 2014 he’d undergone open-heart surgery to replace a damaged aortic valve caused by a bicuspid aortic valve – a condition where the aortic valve has two flaps instead of three.
That November, he returned to have his tooth removed.
He recalls: “On the day the dentist said he wouldn’t give me antibiotic prophylaxis (AP) – a preventative antibiotic to stop infections in high risk patients with heart conditions – because it was against the guidelines set out by National Institute for Health and Care Excellence (NICE) and he would get into trouble if he prescribed them.
“My response was, ‘Well, you’re the expert. You know what you’re doing, so carry on’.”
About two weeks later, Greg started experiencing excruciating back pain.
“I thought maybe I’d twinged my back at first,” he says.
“By the time my wife Linda came home, I was virtually crippled. I had to crawl to go to the toilet.
“I’ve had injuries playing football but this sharp, acute pain was something else.”
He was admitted to Morriston Hospital in Swansea but was discharged after four days with no diagnosis.
The next six months were brutal.
A consultant in the hospital said to me that if I hadn’t come in when I did, I would have died
Greg Hutton
Greg says: “My attitude was: this is happening. We’ll get to the bottom of it and get through it.
“But I ended up going to more than 35 medical appointments across three hospitals and the GP. No one could work out what was wrong.”
He became jaundiced, weak, and plagued by night sweats.
“It felt like every internal organ was taking its turn in kicking me from the inside out,” he says.
“Even my GP told me he was tearing his hair out trying to work out what was wrong with me.”
In May 2018, during a scan, a radiographer noted Greg’s spleen was enlarged, suggesting a blood infection.
“That was a Friday evening,” Greg recalls. “By the time I got home, it took me a quarter of an hour to walk 100 yards from the bus stop to my house.
“The next morning I Googled ‘enlarged spleens’ and one cause was endocarditis – an infection of the heart lining.”
Greg’s research revealed that invasive dental procedures without AP treatment could trigger endocarditis in people with heart conditions.
“Bells started ringing,” Greg says. “I discovered that AP was commonly used in high-risk patients like me in many other countries – including Australia and America – but not in England and Wales where the guidelines don’t recommend it.”
He urged his GP to reconsider his symptoms.
Greg says: “I called him and said, ‘It’s not endocarditis is it?’
“My GP had tested for it and nothing had shown but I said to him, ‘I’m dying. I can’t just keep going to more hospital departments.’
“He got me into a hospital immediately.”
Three days later, Greg was finally diagnosed with bacterial endocarditis – a condition so tricky to detect that it doesn’t always appear in blood tests.
Tests confirmed streptococcal bacteria from his mouth, almost certainly linked to his dental treatment.
CLOSE CALL
“A consultant in the hospital said to me that if I hadn’t come in when I did, I would have died,” he says.
“The treatment I had left me almost completely deaf in the left ear.
“I also now have tinnitus and reduced hearing in my right ear. I would have died without it though so it’s a small price to pay.”
During his four-month hospital stay, Greg collapsed due to a splenic infarction – another rare condition where the spleen’s blood supply is blocked that was caused by the initial infection.
In August 2018, he also underwent a second open heart surgery, to have his aortic valve removed.
It had also been destroyed by the bacterial endocarditis.
He was finally discharged in September 2018. But just weeks later, another part of a tooth chipped, forcing him back to the same dentist.
Despite sharing his ordeal, the dentist still seemed reluctant to prescribe AP to Greg for future treatments so he walked away.
“I left that practice and didn’t join another for four years. I was just so distrusting of the dental profession at that point,” he says.
I was in hospital so much it felt like I’d served a prison sentence
Greg Hutton
By January 2019, Greg returned to work – but he was far from being out of the woods.
Three months later, he was back in hospital with fungal endocarditis – an even rarer and deadlier form of the disease.
Greg says: “It’s likely I got it either from the original treatment to cure my bacterial endocarditis or from the aortic valve procedure, because wherever there’s blood or an open wound there’s potential to get another infection. It was so unlikely though.
“I knew the mortality rate for endocarditis was high. Getting it a second time felt like pushing my luck.”
For Greg’s wife Linda, 64, and their daughter Kayleigh, 36, the ordeal was agonising.
“I don’t know how we got through it,” he adds.
“It was always in the back of my mind that things weren’t going well but I had the easy job.
“It was my wife and daughter who had the hard job. I just had to sit there and let the doctors do what they could.
“I was in hospital so much it felt like I’d served a prison sentence.
“When I was finally discharged, it was emotional, like a cancer patient ringing the bell. All the staff were there.”
Five years later, the words of his consultant still echo in his head.
Greg says: “After leaving the hospital that second time, she said to me, ‘Go home and enjoy the rest of your life, for however long that may be’.”
Greg’s recovery was miraculous, but the damage was done. In 2020, he suffered a minor heart attack linked to the fungal infection.
By the end of 2021, he needed to repair a leaky heart valve, again because of the damage done by the fungal endocarditis.
Greg’s life mission is to make sure that no others go through what he has – or worse still, die.
Among many others, he’s campaigning to have NICE guidelines amended, so that dentists give AP as a matter of course to patients like him with heart conditions.
Under current guidelines they say that antibiotics should not be given “routinely” – wording that Greg insists is confusing dentists.
Last year, medics raised concerns in The Lancet medical journal that around 400,000 people in the UK are at high risk of developing infective endocarditis – a life-threatening infection of the heart’s inner lining or valves – after dental treatment.
They estimate that the condition kills 30 per cent of sufferers within a year and may have caused up to 2,010 deaths over the past 16 years due to inadequate AP treatment.
What is infective endocarditis?
INFECTIVE endocarditis is the inflammation of the endocardium - the inner lining of the heart - as well as the valves that separate each of the four chambers within it.
It is caused by bacteria, or sometimes fungi, entering the bloodstream and sticking to heart structures.
This can happen during everyday activities like brushing your teeth, as well as through needles and tubes, heart surgery, catheters and chemotherapy.
Some people are more likely to get infective endocarditis than others. This includes those with an artificial heart valve, enlarged heart muscles, medical conditions like HIV and diabetes, and people undergoing invasive dental procedures.
The condition is rare, affecting 30 in every million people each year in the UK.
But it can be life-threatening, especially if there are complications, so early diagnosis and treatment are vital.
The most common symptoms are flu-like, such as a fever, as well as weight loss, general fatigue and back pain.
Some people go on to experience confusion, shortness of breath, a stroke, ‘cold leg’ from a blocked artery and boils or black patches on their fingers or toes.
Treatment usually involves antibiotics in hospital, but up to half of patients require surgery to repair or replace a damaged heart valve.
One in five people are at risk of dying from infective endocarditis.
Source: NHS
Greg says: “The trouble is that insurance indemnifiers tell dentists to follow guidelines.
“If they don’t, they won’t be covered if someone has a minor reaction to antibiotics, so many dentists don’t prescribe them.
“I could easily have died, and others have, because the guidelines don’t go far enough and are nowhere near clear enough.
“How many more unnecessary deaths do there have to be until they do something?”
Determined to prevent others from suffering the same fate, he launched a compensation claim in 2018, represented by Holly Bowditch of Wolferstans Solicitors.
In 2022, he settled out of court with his former dentist’s insurers for a substantial six-figure sum – the second highest recorded dental compensation payout.
Greg, who runs the Facebook group Endocarditis UK, says: “The case needed to be won to set a precedent moving forward. If my story can save a life and create change, then it’s worth it.
“I’ve estimated the total cost of my care and recovery to be upwards of £400,000.
“All of this could have been avoided with a 3g sachet of amoxicillin at a cost of about £1.
“I feel lucky to be here today, but I know I may not be as lucky if this happens again.
“The miracle lies with the medics who saved me but I won’t rest until it becomes the norm for dentists to offer AP to patients like me.”
A NICE spokesperson told The Sun: “We recently published an update to our guideline on the use of antibiotics to prevent infective endocarditis.
“Our advice remains that antibiotics should not be prescribed routinely to prevent IE in adults and children having dental and non-dental procedures.
“However, the updated guideline provides further advice for certain groups with structural heart defects who are at higher risk of IE, and for whom preventive antibiotics may be appropriate when undergoing dental procedures.
“By directly linking our recommendation to implementation advice from the Scottish Dental Clinical Effectiveness Programme, people at higher risk of IE, for whom consideration of the preventive use of antibiotics may be required, will be more readily identified.”