Chandler's Ford heart failure dad leads world-first trial

Phil O’Donoghue, who has non-ischemic cardiomyopathy (NICM), had a defibrillator fitted in his chest at University Hospital Southampton on Tuesday as part of the study to work out more accurately which heart failure patients might need them.

The 53-year-old said: "Having the defibrillator doesn’t bother me, it’s just one of those things. If it goes off, it goes off. And if it doesn’t, then great.

"But if the trial can show one way or another whether they should be used, and move treatments forward, then it’s obviously a benefit.”

Phil was diagnosed with his condition after he went to A&E during the first Covid-19 lockdown in May 2020 because he was suffering from palpitations and feeling unable to breathe.

Non-ischemic cardiomyopathy is a common type of heart failure which can lead to abnormal heart rhythms and means people with the condition are more likely to die from a sudden cardiac arrest, when a person's heart stops pumping blood and they cannot breathe normally.

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Phil said the diagnosis of heart failure has had a big effect on his day-to-day life: “I can’t do the things I want to do if it means exerting myself.

"I had to change what I did physically at work. I do a lot of fishing for relaxation but pushing all my gear on the cart means I get very breathless.

"I used to ride motorbikes and do track days but pushing and pulling the bike round is hard work.”

Phil was on medication for two and a half years but then suffered further episodes in January and March this year.

He said: “I was rushed into hospital and tests showed my heart’s ejection rate was down to 24 per cent, which meant blood was not being pumped around my body properly. I was told there was a trial about to start and that I fitted what they were looking for.”

Phil O’Donoghue undergoing surgery at UHS. (Image: UHS)

The operation was a success and Phil was the first of 2,500 patients set to take part in this study, funded by £1.8m from the British Heart Foundation, run by the Southampton Clinical Trials Unit and led by consultant cardiologists Dr Andrew Flett and Professor Nick Curzen from University Hospital Southampton.

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The trial will eventually open at 35 UK hospitals and is currently open at five hospitals in Southampton, Portsmouth, Aberdeen, London and East Kent.

An X-ray of Phil O’Donoghue showing the implant. (Image: UHS)

“I wanted to do the trial,” said Phil.

“My mum was a nurse for forty years and for 16 years after my daughter was born, doctors checked her for things like bone density.

"So, I’ve always been involved in research.

"When I spoke to Dr Flett it wasn’t even a question of shall I do it or shall I not, it made perfect sense to go ahead and do the trial.”

All the participants have scar tissue in their heart muscle.

Dr Flett said: "There is evidence that scar tissue in the heart muscle may be the cause of dangerous heart rhythms for patients with NICM. This will be the first-ever trial to look at whether the presence of scar tissue can predict who should be fitted with an ICD.”

The participants will be separated into two groups. The first will be fitted with the implantable cardioverter defibrillators (ICD) like Phil, and the second will be fitted with an implantable loop recorder (ILR)  - a device which monitors heart activity but does not shock the heart.

Hitesh Mistry, 48, from Southampton, will be in this second group.

The 48-year-old, who had been treated for anaemia for several years, didn’t know he had a heart condition until one terrifying incident.

He said: "One night during the hot weather last summer I tried to go to bed and when I laid down, I couldn't breathe. Each time, I just couldn't breathe.”

Hitesh was taken for an x-ray the following day which found fluid on his lungs that was restricting his breathing, and following further tests he went straight in to see a cardiologist who gave the diagnosis.

He said: "I was pretty shocked as I had no idea that I had a heart condition. The doctors also don't know how long I've had it for but believe it was causing the anaemia, so it may have been some time.”

Ahead of his involvement in the trial, he said: "I feel reassured that rather than just relying on the pills, something more is going happen. The activity of my heart is being recorded and goes back to the hospital to be monitored.

“But one of the reasons I agreed to be part of the trial is that it's looking at something that's unknown at the moment and will hopefully help other people like me in the future. I'm all for helping out with research.”

Heart failure effects over 900,000 people in the UK, with around 200,000 new cases diagnosed each year and an estimated cost of £2bn to the NHS, according to the Southampton Clinical Trials Unit.