When people think about heart failure, they usually think it is caused by a heart attack or high blood pressure.
But another of the most common causes of heart failure is a relatively little-known condition called dilated cardiomyopathy, which is a disease of the heart muscle.
Often affecting younger patients and even babies, it can be difficult to diagnose – but if caught early it can be managed to prevent heart failure.
For Jane Rowlands of Brockley, south London, it was a scary symptom that kickstarted her difficult path to a diagnosis of the condition. As her heart struggled to cope, her body responded by retaining water – causing her organs to swell dramatically.
‘I had always been fit and healthy and in fact, never had a day off work due to sickness since my son was born, which was 30 years ago,’ she told Metro.co.uk.
‘I was never ill and did Pilates twice a week.’
She said over the course of a few weeks, she found her stomach becoming bloated and she started to struggle climbing the stairs at work.
Eventually, after going to her GP and getting some blood tests, she was told to go straight to A&E as one result suggested she may have a clot on the lung.
‘By now I could hardly walk my feet were so swollen, and my body was full of water,’ she said.
‘My body was being taken over by aliens’
‘But I still went to work, and I was glad that I did as staying at home reflecting on my declining health would have been awful.
‘It felt like my body was being taken over by aliens. I could barely eat.’
After a number of scans and feeling like she was getting nowhere, Jane eventually paid privately to have some of the fluid drained out of her body.
‘The fluid came out a dark orange colour,’ she said, ‘I was so relieved but by now things were so bad, there was water leaking out of the back of my legs. I was literally bursting.’
It was at that point she decided to give up her beloved job as a school principal.
But thankfully a relative of her sister’s was a chest consultant – and immediately recognised the symptoms as a heart problem.
On return to A&E she was given an echo scan, and Jane said she could ‘immediately see things were bad’.
‘I had blood clots in my heart and my heart muscle looked all squishy and just wrong,’ she explained. And the problems had been spotted just in time, as just two days later she suffered a mini stroke.
But after finally being diagnosed with dilated cardiomyopathy Jane was put on the right medication and made an incredible recovery within just a few weeks.
About dilated cardiomyopathy
According to the NHS website, in dilated cardiomyopathy the muscle walls of the heart become stretched and thin, so they cannot contract properly to pump blood around the body.
If you have dilated cardiomyopathy, you’re at greater risk of heart failure, where the heart fails to pump enough blood around the body at the right pressure. There’s also a risk of heart valve problems, an irregular heartbeat and blood clots.
For many the cause is unknown, but gene inheritance, an unhealthy lifestyle and underlying medical conditions could play a role.
Possible symptoms include:
- Shortness of breath when you’re active or lying down
- Reduced ability to exercise
- Swelling in your legs, ankles and feet
- Swelling of your abdomen due to fluid build up
- Chest pain
- Unusual sounds heard when your heart beats (heart murmurs)
Because she had recovered so fast, she asked if she could come off her medication. That was when Dr Brian Halliday, from Royal Brompton Hospital, stepped in.
‘One in three people on medication for dilated cardiomyopathy get better – so much better they often feel completely normal – and ask if they can come off their medication so they don’t have to take it for the rest of their lives,’ said the researcher.
But he said doctors weren’t previously sure whether patients were able to stop treatment, or whether they would have to stay on it for the rest of their lives.
‘So my team was funded by the British Heart Foundation (BHF) to run a trial to see whether people could stay off their medication,’ Dr Halliday explained.
Jane was quickly signed up to his trial group, where she came off her medication in a very controlled way and was closely monitored by the research team.
‘We discovered as soon as they came off the treatment they had a reduction in heart function, so it showed they probably need this medication,’ Dr Halliday said.
‘We found if patients come off, there’s a 50% chance of their heart getting worse very quickly.’
He revealed the research was ‘more impactful’ than he thought it would be, as the effects of coming off medication were so dramatic.
‘I would have done something dangerous’
But Dr Halliday’s research can now help doctors advise patients to continue their treatment in a lower dose to prevent their condition from getting worse – and stop it from leading to heart failure in the future.
Jane said: ‘If I hadn’t taken part in the trial I would have probably just tried stopping the medication if I’m honest – and that obviously would have been dangerous and I’d have deteriorated.
‘Since participating in the trial, I am now on a reduced dose of medications to prevent heart failure.’
Dr Halliday added: ‘The bottom line is, none of this would have been possible if it wasn’t for the BHF.
‘Patients wanted us to get answers for them, and thanks to the BHF we could. These types of research will improve the quality of life for patients – and there are around one million people with heart failure living in the UK alone.
‘Up until recently, the BHF was the biggest funder of cardiac research in the world. That’s a huge amount of research, and a vital cog in the system for us all.’
Dr Halliday said his research cost £250,000 to carry out – which was ‘relatively cheap’ for a study of this scale. He is in the process of applying for more funding to continue his research into the recovery of dilated cardiomyopathy patients.
‘Some research can cost up to £1 million,’ he said. ‘So that’s why every little donation from the public towards it helps. I cannot stress how important it has been, and will continue to be.’
How Metro.co.uk is helping Beat Heartbreak Forever
The British Heart Foundation (BHF) has teamed up with Metro.co.uk to help raise awareness and funds – because hearts need help now more than ever.
Since the BHF was established in 1961, it has funded pioneering research leading to ground-breaking and lifesaving treatments like statins and heart transplants.
Coronavirus has cut the BHF’s ability to fund new research in half from £100 million to £50 million, but heart and circulatory diseases are still the world’s biggest killers. If progress slows, even more lives will be at risk. As the charity faces the biggest crisis in its history while a second national lockdown approaches, it urgently needs support.
Some important facts:
- There are around 7.4 million people living with heart and circulatory diseases in this country, including 900,000 with heart failure
- Heart and circulatory diseases cause more than a quarter of all deaths in the UK. That’s nearly 170,000 deaths each year – an average of 460 deaths each day
- Someone dies every eight minutes in the UK from coronary heart disease, the most common cause of heart attack and the single biggest killer worldwide
- Before the BHF existed, most babies born with a heart defect did not survive to their first birthday. Today around 8 out of 10 survive to adulthood
Dr Charmaine Griffiths, chief executive at the British Heart Foundation said: ‘The Covid-19 pandemic has been devastating for so many people, especially those with heart and circulatory diseases. But we face an unprecedented funding crisis that threatens to arrest real progress.
‘The shockwaves from such a drop in funding will be profound, stalling discoveries that could save and improve lives. We are urging the Government to establish a Life Sciences-Charity Partnership to give vital support to charity research over the next three to five years and protect the future of UK science.
‘Charities have driven breakthroughs which have turned the tide on some of our biggest killers including heart disease and cancer. But without Government commitment to funding, charities will be forced to make devastating cuts to their research which will be hugely damaging for patients and UK science.’
You find out more and donate to help Beat Heartbreak Forever here.
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