Whenever Alison Banayoti runs up the stairs or takes a long walk, she says a silent “thank you” for the accidental diagnosis that most likely 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, which opens and closes about 100,000 times a day, keeps blood from the left ventricle — the heart’s main pumping chamber — to the aorta, the body’s largest blood vessel.
If the valve doesn’t work properly, it can starve vital organs, muscles, and tissues of oxygen, causing dizziness and shortness of breath.
If left untreated, aortic stenosis can potentially cause fatal heart failure — where the heart, unable to pump blood efficiently, wears out under the pressure to keep circulation going.
If the valve is not working properly, it can starve vital organs, muscles and tissues of oxygen, causing dizziness and shortness of breath
Signs to watch out for
Aortic stenosis occurs when the opening of the main valve, which carries fresh oxygenated blood from the heart to the rest of the body, narrows, reducing blood flow.
The disease is usually caused by a buildup of calcium – a mineral in the blood – on the valve.
This naturally increases with age, but smoking, high blood pressure and obesity can accelerate it.
The heart then has to work harder to pump blood around the body, which in turn receives less oxygen-rich blood.
Often the first signs of damage to the aortic valve go unnoticed. Sufferers usually live unaffected for several years before symptoms begin and they seek help for treatment.
Symptoms of aortic valve stenosis often do not appear until it is advanced. These can be:
Now research suggests that up to 300,000 people in Britain could have the potentially fatal condition without even knowing it.
Many will have no symptoms and will not be diagnosed until the condition is advanced – when half could die within five years without prompt treatment, according to research from NHS England, British Universities and the University of Notre Dame in Fremantle, Australia.
The findings (published in the journal Open Heart) have sparked concern among experts. The condition is known to affect one in 100 people in the UK, with an estimated 300,000 severe aortic stenosis, with one in two people dying in just two years.
Callum Ferguson, director of policy at the Heart Valve Voice charity, said: “The data is incredibly worrying.
“Awareness of the red flag symptoms for aortic stenosis – shortness of breath, dizziness and fatigue – is very low anyway. Some patients consider them to be signs of aging or lack of fitness. Others show no symptoms.’
Kate Bratt-Farrar, of the charity Heart Research UK, agrees: ‘We are concerned about this study’, but added: ‘This is the first step towards a better understanding of the capacity needed to treat aortic stenosis in to deal with the future.’
The most common cause of aortic stenosis is wear and tear on the heart and usually affects people over the age of 65.
When the narrowing is mild or moderate, the heart compensates and patients have no symptoms, explains Dr. Maurice Pye, senior cardiologist at York Hospital. “By the time symptoms develop, such as chest tightness, palpitations, shortness of breath, or chest pain, the disease is already quite severe,” he says.
“It’s only picked up if it’s mild or moderate when a doctor listens to the heart for some other reason and hears a murmur.”
A heart murmur may indicate that the blood is not flowing properly from the heart and that the aortic valve is defective. It has a “whooshing” or “swishing” sound, made by turbulent blood flow, as opposed to the softer sounds of blood flow in a healthy heart.
dr. Pye adds: ‘You are unlikely to overlook the condition once you have been seen by a cardiologist, as they will listen to your heart and pick up on the murmur and arrange for a cardiac ultrasound. [echocardiogram] who would definitively diagnose it.”
Treatment usually includes either open heart surgery to replace the valve or, in patients over 75 who are too frail, a less invasive procedure (called TAVI) in which the valve is operated on through a blood vessel in the thigh or chest.
But it’s not always older people who are affected: Alison was in his 40s when the diagnosis was made.
“I was always fit and healthy, but one day when I was 43, I had a funny twist,” she says. “I felt dizzy and rubbery on my right side.”
Many will have no symptoms and will not be diagnosed until the condition is advanced – when half could die within five years without prompt treatment, according to research from NHS England, British Universities and the University of Notre Dame in Fremantle, Australia
Alison’s GP sent her to the hospital for an echocardiogram, a scan that uses sound waves to create an image of the heart – which likely saved her life.
She had a heart murmur, and the scan revealed that Alison was born with only two “cusps,” or flaps, on her aortic valve, instead of the normal three.
The flaps open and close to allow blood to 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.
Still, Alison had none of the common symptoms.
“It was purely coincidental that I had my funny turn and was sent to a cardiologist, otherwise I might never have known I had the condition,” she says. “I’ve been so lucky.”
After the diagnosis, Alison, who is married to retired GP Amer, 63, had annual scans to check her heart. She was also given five tablets, including a statin, a beta blocker (used to slow the heart rate and relieve pressure), and a blood thinner.
But in 2018, when she was 57, things went downhill fast.
“I already felt exhausted walking up the stairs,” she says. “Then I started to get out of breath. I had no chest pain but felt dizzy. I thought the shortness of breath was due to aging.’
But her advisor found that the aortic stenosis had worsened and she needed an aortic valve replacement. Without it, she was told, she only had a 50/50 chance of living for two years.
“Although it was terrible news, I counted my blessings that it was caught in time,” she says.
“The consultant explained that once symptoms appear, replacement surgery usually needs to be done within 12-18 months.”
In a four-hour open-heart surgery at St Thomas’ Hospital, London, her aortic valve was replaced with one made from donated human valve tissue.
“When I came to, I immediately noticed a difference,” says Alison. ‘I was able to take a full, deep breath—the first in a long time. I was given morphine and had a scar on my chest, but I was so grateful 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 later, she rappelled St. Thomas’ Hospital for charity, enjoys long dog walks and learns to swim.
“The surgery has revived me,” she says. “Without the original diagnosis when I was in my 40s, I would never have thought it was this condition, or even that it existed.
“It made me realize that a lot of other people have it, but won’t know until it’s too late,” she says.
Callum Ferguson says that with a high prevalence among people over 65, routine stethoscope checkups by primary care physicians could identify patients without symptoms.
He adds: ‘It is crucial that anyone with aortic stenosis symptoms contact their primary care physician immediately and ask them to listen to their heart with a stethoscope.
“Early detection is essential, so a simple stethoscope check could save their lives.”
Under the microscope
Singer and actor Clare Grogan, 60, answers our health quiz
Can you run up the stairs?
I’ve been running three miles four or five times a week since I was 17. Running is my therapy — it helps me clear my head.
Do you get five a day?
I love vegetables. I cook a lot with bell pepper, zucchini, eggplant and garlic. With fruit I grab what is about to go off and juice it. Sometimes I add a splash of vodka!
Ever been on a diet?
No. I can’t rob myself, but I’m really good at stopping when I’ve had enough. I am 5 ft 1 in and I am almost always just above or below 8 st.
How has the pandemic affected you?
I avoided getting Covid until recently and it was horrible when I did. My whole throat was closed and I had a fever. That was a few weeks ago, but I’m still more tired than usual.
I drink a glass of wine every day – and I don’t beat myself up about it.
Any family issues?
No, but my mother died prematurely. She went to the hospital and caught Clostridium difficile which was very sad. My father died just before the pandemic and in a way that was a blessing, considering 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 cut into my left cheek. I ended up with 27 stitches. I had to reopen it about 15 years later because I had 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 50 pence piece.
HRT. It has made a huge difference to everyone’s life in this household.
Ever had plastic surgery?
Being able to move my face is important to me as a singer and actor, so I don’t think I will go the Botox route. Not yet anyway.
Ever been depressed?
I’ve had lows in my life, especially when I had six miscarriages and four failed IVF treatments. What kept me from crashing was that I was always looking for solutions. [Clare adopted her daughter in 2005]. Parenting has been the most incredible.
An old Scottish combination of a fry-up and some Irn-Bru. And the fry-up should include tattie scones.
What keeps you up at night?
Everything. Don’t tell me anything because it will keep me up all night.
No. I was terrified of everything and then realized it was pointless. Now I really enjoy facing my fears.
Do you want to live forever?
No. It would be very tiring. I can’t wait for a big, long sleep.
Altered Images’ album Mascara Streakz will be released on August 26 by Cooking Vinyl.