Whenever Alison Banayoti runs up the stairs or goes for a long walk, she says a silent ‘thank you’ for the chance diagnosis that most probably saved her life.
Alison, 61, a hospital administrator from Haywards Heath, West Sussex, had aortic valve stenosis — a narrowing, or stiffening, of the aortic valve in the heart.
The valve, that opens and shuts about 100,000 times a day, keeps the blood flowing from the left ventricle — the heart’s main pumping chamber — to the aorta, the body’s biggest blood vessel.
If the valve doesn’t work properly, it can starve vital organs, muscles and tissues of oxygen, triggering dizziness and shortness of breath.
Left untreated, aortic stenosis may cause potentially fatal heart failure — where the heart, unable to pump blood efficiently, wears out from the strain of keeping the circulation going.
If the valve doesn’t work properly, it can starve vital organs, muscles and tissues of oxygen, triggering dizziness and shortness of breath
Now research suggests up to 300,000 people in Britain may have the potentially deadly condition without even knowing it.
Many will have no symptoms and will be diagnosed only when the condition is advanced — when half could die within five years without prompt treatment, according to the research by NHS England, UK universities and the University of Notre Dame in Fremantle, Australia.
The findings (published in the journal Open Heart) have raised concern among experts. The condition is known to affect one in 100 people in the UK, with an estimated 300,000 having severe aortic stenosis, which kills one in two people in just two years.
Callum Ferguson, head of policy at charity Heart Valve Voice says: ‘The data is incredibly worrying.
‘Awareness of the red flag symptoms for aortic stenosis — breathlessness, dizziness and fatigue — is very low anyway. Some patients mistake them as signs of ageing or lack of fitness. Others show no symptoms.’
Kate Bratt-Farrar, of charity Heart Research UK, agrees: ‘We’re worried by this research,’ but adds: ‘This is the first step towards a better understanding of the capacity required to treat aortic stenosis in the future.’
The most common cause of aortic stenosis is wear and tear on the heart and it usually affects those aged over 65.
When the narrowing is mild or moderate, the heart compensates and patients don’t have symptoms, explains Dr Maurice Pye, a senior cardiologist at York Hospital. ‘By the time symptoms develop, such as chest tightness, fluttering in the heart, breathlessness or chest pain, the disease is already quite severe,’ he says.
‘It is only picked up when it’s mild or moderate if a doctor listens to the heart for another reason and hears a murmur.’
A heart murmur can indicate blood is not flowing properly from the heart and the aortic valve may be faulty. It has a ‘whooshing’ or ‘swishing’ sound, made by turbulent blood flow, unlike the smoother sounds of blood flow in a healthy heart.
Dr Pye adds: ‘The condition is unlikely to be missed once you are seen by a cardiologist because they will listen to your heart and pick up the murmur, and arrange a cardiac ultrasound [echocardiogram] which would diagnose it conclusively.’
Treatment usually involves either open-heart surgery to replace the valve or, in patients over 75 who may be too frail for this, a less invasive procedure (called TAVI) where the valve is operated on via a blood vessel in the thigh or chest.
But it’s not always older people who are affected: Alison was in her 40s when diagnosed.
‘I was always fit and healthy, but at 43 I had a funny turn one day,’ she says. ‘I felt dizzy and rubbery down my right side.’
Many will have no symptoms and will be diagnosed only when the condition is advanced — when half could die within five years without prompt treatment, according to the research by NHS England, UK universities and the University of Notre Dame in Fremantle, Australia
Alison’s GP sent her to hospital for an echocardiogram, a scan that uses soundwaves to produce an image of the heart — which probably saved her life.
She had a heart murmur and the scan revealed Alison had been born with just two ‘cusps’, or flaps, on her aortic valve, rather than the normal three.
The flaps open and close to let blood leave the heart. Missing a flap meant it was harder for her heart to send the right amount of blood through the valve into the aorta with each beat.
Scans also revealed a narrowing of her aortic valve. She was diagnosed with aortic stenosis.
Yet Alison had none of the common symptoms.
‘It was pure chance I had my funny turn and was sent to a cardiologist, or I might never have known I had the condition,’ she says. ‘I was so lucky.’
After the diagnosis, Alison, who is married to retired GP Amer, 63, had annual scans to monitor her heart. She was also put on five tablets, including a statin, a betablocker (used to slow heart rate and relieve pressure) and a blood thinner.
But in 2018, when she was 57, things went downhill rapidly.
‘I felt exhausted just walking up the stairs,’ she says. ‘Then I started getting breathless. I had no chest pain but felt dizzy. I thought the breathlessness was down to getting older.’
But her consultant found the aortic stenosis had worsened and she needed an aortic valve replacement. Without it, she was told, she had just a 50/50 chance of living for two years.
‘Although it was devastating news, I counted my blessings it was caught in time,’ she says.
‘The consultant explained that once symptoms appear, replacement surgery usually has to be done inside 12-18 months.’
In a four-hour open-heart operation at St Thomas’ Hospital, London, her aortic valve was replaced with one made from donated human valve tissue.
‘When I came around, I noticed a difference straight away,’ says Alison. ‘I could take a full, deep breath — the first in a long time. I was on morphine and had a scar running up my chest, but was so thankful to be alive.’
Now fit and well, she is back at work and enjoying life, and her medication has been reduced to just a beta blocker.
Six months on, she abseiled down St Thomas’ Hospital for charity, enjoys long dog walks and is learning to swim.
‘The op gave me a new lease of life,’ she says. ‘Without the original diagnosis in my 40s, I would never have imagined it was this condition, or even that it existed.
‘It made me realise many other people have it yet will not know until it’s too late,’ she says.
Callum Ferguson says that with a high prevalence in the over-65s, routine stethoscope checks by GPs could identify patients with no symptoms.
He adds: ‘It is crucial that anyone with aortic stenosis symptoms contacts their GP immediately and asks them to listen to their heart with a stethoscope.
‘Early detection is key, so a simple stethoscope check could save their life.’
Under the microscope
Singer and actor Clare Grogan, 60, answers our health quiz
Can you run up the stairs?
I’ve run 5km four or five times a week since I was about 17. Running is my therapy — it helps me clear my head.
Get your five a day?
I love vegetables. I cook a lot with peppers, courgettes, aubergines and garlic. With fruit, I’ll grab whichever is about to go off and juice it. Sometimes I’ll add a splash of vodka!
No. I cannot deprive myself but I’m really good at stopping when I’ve had enough. I’m 5 ft 1 in and I’m pretty much always just over or under 8 st.
How has the pandemic affected you?
I avoided catching Covid until recently and it was horrible when I did. My entire throat closed up and I had a raging temperature. That was several weeks ago, but I’m still more tired than usual.
I have a glass of wine every day — and I don’t beat myself up about it.
Any family ailments?
No, but my mum did die prematurely. She went into hospital and caught Clostridium difficile, which was really sad. My dad passed away just before the pandemic and, in a way, that was a blessing as he was 93 and had dementia.
I was at a gig in Glasgow when I was 17 and got caught in the crossfire when a fight broke out. A broken glass slashed my left cheek. I ended up with 27 stitches. I had to have it reopened about 15 years later, as I’d developed a lump in my cheek and an X-ray revealed that there was still a piece of glass in my face. It was the size of a 50p piece.
Pop any pills?
HRT. It’s made a big difference to everybody’s life in this household.
Ever have plastic surgery?
being able to move my face is important to me as a singer and actor, so I don’t think I’ll go down the Botox route. Not yet anyway.
Ever been depressed?
I’ve had low points in my life, particularly when I had six miscarriages and four unsuccessful IVF treatments. What stopped me from crashing was I was always looking for solutions. [Clare adopted her daughter in 2005]. Parenthood has been the most incredible thing.
An old Scottish combination of a fry-up and some Irn-Bru. And the fry-up must include tattie scones.
What keeps you awake at night?
Everything. Don’t tell me anything because it will keep me up all night.
None. I’ve been terrified of everything and then realised there was no point. Now I quite like facing my fears.
Like to live for ever?
No. It’d be really exhausting. I can’t wait for a big, long sleep.
Altered Images’ album Mascara Streakz is released by Cooking Vinyl on August 26.