Carolyn Mitchell developed heart failure after a bout of influenza
Just a few weeks into a new job, Carolyn Mitchell came down with a nasty bout of influenza — but soldiered on, not wanting to let anyone down at work.
‘It was early in the year and I felt severely fatigued and had a chesty cough,’ recalls Carolyn, 58, two years on. ‘It felt similar to flu I’d had in the past and so I thought it would soon pass.’
But her symptoms didn’t go away. In fact, within a week, ‘I found walking just a few steps would leave me out of breath,’ recalls Carolyn, a nurse and mother-of-three from Edinburgh, who lives with husband, Thomas, 62, a mental health consultant.
‘This wasn’t normal for me — the previous year I’d climbed Ben Nevis, so I wasn’t unfit by any means.’
Carolyn’s GP said her chest sounded crackly and diagnosed possible pneumonia (inflammation in the lungs, usually due to a viral or bacterial infection). He urged her to take time off, rest, take paracetamol and drink plenty of fluids to flush the virus out.
But, within days, the breathlessness worsened. ‘By this stage my breathing was so bad I could hardly walk the few metres to the surgery from the car park,’ Carolyn says. ‘I saw another doctor and she prescribed antibiotics [in case it was pneumonia caused by a bacterial infection] and ibuprofen.’
However, days later, she woke up at 3am in pain and unable to breathe — Thomas rushed her to the local hospital.
‘When I got there, I began to dry-heave and felt all the energy drain out of me,’ she says. ‘I had my blood pressure checked; an ECG, which measures electrical activity of the heart; and an echocardiogram, to look at the heart’s structure and check it is normal.
In 60 per cent of people with heart damage after an infection, their symptoms are not initially recognised by doctors
‘The doctor said I had high blood pressure, tachycardia — a racing pulse — and to my horror, an enlarged heart that suggested I had developed heart failure, which meant my heart wasn’t pumping blood around the body properly, causing my breathlessness.’
The enlarged heart was the result of damage and inflammation triggered by flu.
‘I was shocked to discover I had heart failure,’ Carolyn says. ‘As a nurse, I knew that viruses can cause heart damage, but I didn’t connect my symptoms.’
In fact, a new survey by the charity Cardiomyopathy UK found that in 60 per cent of people with heart damage after an infection — like Carolyn — their symptoms are not initially recognised by doctors and, for 17 per cent of sufferers, it took more than a year for a diagnosis to be made.
Inflammation of the heart muscle wall, also called myocarditis, can be triggered by any viral, fungal or bacterial infection, including colds, flu and gastroenteritis.
About 2,000 people are hospitalised every year as a result of myocarditis — and one person a week dies because of it.
‘It’s easy to dismiss symptoms of this type of heart damage as a lengthy cold or bout of flu,’ says Dr Sanjay Prasad, a consultant cardiologist at the Royal Brompton Hospital in London. ‘Yet diagnosing myocarditis is critical, because, if treated early, we can minimise damage to the heart.’
It can be diagnosed quickly with tests such as an ECG, echocardiogram and blood tests for proteins BNP and NT-proBNP, which are higher when the heart is damaged.
Warning signs that myocarditis has ensued include tightness in the chest, shortness of breath, palpitations and flu-like symptoms such as a high temperature and fatigue. While some of these symptoms can feel similar to those associated with flu and other chest infections, there are some stand-out signs, says Dr Prasad.
‘These include heart palpitations, severe chest pain that lingers for weeks, fluid build-up that causes the feet and legs to swell; and breathlessness when lying down,’ he says. ‘The best way to protect yourself is to have the flu vaccine and if you have a family history of heart problems you may want to consider being screened for genes that may put you at higher risk of this type of heart damage.’
Myocarditis occurs when the body’s immune system overreacts to an infection and starts attacking the heart muscle.
‘Quite why this happens in some people and not others is a matter of intense research, but the theory is that some people have a genetic predisposition,’ says Dr Prasad.
In most cases, people recover without serious long-term complications, but sometimes the heart muscle is permanently damaged.
If it is not detected early, myocarditis worsens and causes inflammation that damages the heart — known as cardiomyopathy. Over time, this can lead to heart failure: one in three patients with heart failure dies within a year of diagnosis.
Daniel Smith, 43, an electrician and father of two, from Nottingham, suffered with severe breathlessness and fatigue for six months before his heart damage was diagnosed. He also suffered from a viral infection months before — but no one made the link.
‘In June 2012 I developed breathlessness. I normally run and play football, so this just wasn’t normal for me,’ he says. ‘I’d had a viral infection several weeks before, but didn’t connect the two. The breathlessness seemed to hit at random times — I could be making a cup of tea or carrying my toolbox. When I went to the GP he said it was stress-related.
Daniel Smith, 43, an electrician and father of two, from Nottingham, suffered with severe breathlessness and fatigue for six months before his heart damage was diagnosed
‘By October I’d become breathless when I lay down and had to sit upright when I slept. I had no energy during the day, and became bedbound. Just after Halloween, I collapsed at home and was taken to A&E. A scan revealed my heart was enlarged.’
He remained in hospital until Christmas, weak, unable to walk and on diuretic drugs to help stop fluid build-up, a common complication of heart failure.
‘I didn’t find out I actually had heart failure until I was transferred to the Royal Papworth Hospital in January, and was told as I was being assessed for the heart transplant list as the damage was so severe,’ says Daniel. ‘It was a hell of a shock. I burst into tears.’
Daniel had litres of fluid drained from his body and was prescribed diuretics to prevent more fluid build-up, as well as medication to improve his heart function.
His heart ejection fraction (a percentage measurement of how much fluid the heart pumps out) was just 15 per cent; the normal level is 55 per cent. With specialist care at the hospital, this improved to 22 per cent after three months, enough for him to be taken off the transplant list. But he had no quality of life and, after separating from his wife, lived with his parents, unable to work.
In September 2016, he was switched to a heart failure medicine called Entresto, a combination of two drugs, which dramatically improved his symptoms.
‘I’ve stayed really well since then, but I can’t believe I wasn’t diagnosed sooner,’ he says.
The concern is that, too often, heart damage caused as a result of infection can be missed. Dr Jim Moore, a GP in Gloucestershire, and president elect of the Primary Care Cardiovascular Society, says part of the problem is a degree of cross-over between cardiac and flu-like symptoms, including breathlessness, chest pain, palpitations or dizziness.
‘While these symptoms can linger in winter, if they’ve not settled or shown signs of improving over a two to three-week period, then patients should seek further advice from their GP, and possible cardiac causes such as heart failure should be considered.’
Carolyn was told her heart ejection fraction was just 18 per cent initially, and she was immediately prescribed drugs.
‘Thomas and I were too shocked to ask the right questions in hospital,’ she says. ‘I thought I’d have to give up my job and we went home and made our wills.
‘But I was relatively lucky. Heart failure was diagnosed and treated within a month of me developing it, and the ejection fraction increased to 45 per cent after three months, which is almost in the normal range.
‘I am now working full-time. I still get breathless and fatigued sometimes, but it’s manageable.
‘I’d urge anyone who develops breathlessness and chest pain after a cold or flu to go back to their GP and get checked out — the earlier myocarditis is diagnosed and treated, the better the long-term outcome.’