Endocarditis after heart surgery: Tom's story
Tom Aylott thought he'd caught the flu, but tests revealed it was endocarditis. Senior Cardiac Nurse Emily Reeve hears his story.
When Tom Aylott developed endocarditis, it seemed like a bout of flu. “One evening I started to come down with a flu-like temperature and severe shivering fits,” he says. “I constantly felt cold and nothing I did could make me warm. It was a doctor friend who recommended that I went to A&E. Blood tests showed I had a staphylococcal infection, with symptoms consistent with endocarditis.”
A CT scan and a transoesophageal echocardiogram (TOE) helped to confirm the diagnosis. Tom stayed in hospital for two weeks.
Problems after heart valve surgery
Tom was at risk of endocarditis because he’d had an aortic valve replacement nine months earlier, aged 33.
Having read about endocarditis since, I realise how lucky I was
He had been fit and active, a keen surfer and rugby player, until he was diagnosed with Marfan syndrome, which can affect the connective tissues of the body. As a result, he needed urgent open heart surgery. Tom experienced heart rhythm problems following the surgery, but was back at work when he fell ill.
“The consultants believe the bacteria had attached itself to my replacement aortic arch,” he says.
“Having read about endocarditis since, I realise how lucky I was, particularly in getting treated very early before the infection could develop and spread further.”
Returning to sport
Some patients stay in hospital for the course of their intravenous antibiotics or come in for treatment as a day patient, but Tom had most of it at home. “I stayed in hospital for a week, during which time they trained me to give myself IV antibiotics at home and this continued for two months afterwards,” he says.
Educating people is important
Tom says he is now “absolutely fine”. He’s even started surfing again, although, following advice from his cardiologist and surgeon, he no longer plays rugby because of the risk of injury. In July 2016 he cycled from Newcastle to Paris for the BHF, riding 600 miles in a week. “It was tough,” he says. “But I am glad I did it. It felt like quite an achievement to get there.”
Tom is keen to raise awareness of endocarditis. “I was aware I might be more susceptible to infections following surgery,” he says. “But I wasn’t aware of how dangerous it could be. I would go straight to hospital if the symptoms returned. Educating people is important.”
Research into endocarditis
We’re trying to stop people suffering from endocarditis. Professor Jennifer Potts is a BHF Senior Research Fellow at the University of York. Her lab looks at the structure and function of proteins on the surface of bacteria and how these cause endocarditis. Her team is studying how bacteria are able to form antibiotic-resistant colonies on the surfaces of heart valves and devices such as pacemaker leads. If we understand this, we may be able to prevent endocarditis in future.