“I was so tired I thought I had cancer... it turned out to be endocarditis” 

“At the beginning of 2022, I was looking forward to retiring from my busy job in social services and spending more time sewing, gardening and singing in a choir.

But by the time I retired, I was so tired, I’d lost interest in everything. I put it down to a busy life – I had no idea I was living with a dangerous heart condition.

It started with a bad bladder infection. After that, something just felt ‘off’.

I’d get up in the morning and by the time I’d washed and dried my hair, I was so tired I had to lie down.

I thought my new puppy, Ethel, was making me exhausted. But I started having bad night sweats and had to keep changing the sheets. It was worse than going through the menopause.

I lost my appetite and felt weak all the time. My daughter Emily and son David were quite concerned.

I remember writing in my diary, ‘I hate this. Why am I feeling unwell all the time?’

Tests found nothing

I kept going to the GP for months, having blood tests, scans and biopsies, but nothing explained these symptoms.

My family has a history of heart problems. My dad died aged 54 from an aortic aneurysm (a bulge in the wall of the largest heart artery).

Two uncles died of heart attacks, and my cousin had noninfective endocarditis (inflammation of the heart’s inner lining that’s not due to an infection).

I’d been told I had a heart murmur – an extra sound in my heartbeat – 10 years earlier, and again in March 2022. Both times doctors said it was nothing to worry about.

I did wonder if my heart was causing my symptoms. But my biggest fear was that they were signs of cancer.

On 1 September 2022, I woke up feeling a squeezing sensation in my chest and arms. Moments later, I lost my balance and blacked out.

When I came round, I called Emily, who took one look at me and rang the NHS 111 helpline.

Doctors diagnosed endocarditis

When I arrived at James Paget University Hospital in Great Yarmouth, I had lots of tests to find out the cause of my chest pain.

A consultant noticed signs of infective endocarditis, an infection in the heart’s inner lining, such as curled fingernails, caused by a lack of oxygen, and a tiny Janeway lesion – a red dot on my hand.

The infection is caused by bacteria that lives on the skin getting into your bloodstream, which is usually harmless. But, in rare cases like mine, it can attach and grow in the inner lining and valves of the heart, leading to serious problems.

With that diagnosis, I was moved to the cardiac ward. After months of not knowing what was wrong, it felt like I was finally in the right place.

A transoesophageal echocardiogram, where they put a small probe down your throat, showed a growth of bacteria (vegetation) inside my heart valve.

When I heard this, I cried because I was so relieved that I didn’t have cancer. I didn’t realise endocarditis is potentially very dangerous.

An MRI found I’d already had 3 small strokes caused by vegetation breaking off and forming blood clots which travelled to my brain.

After 7 days in hospital, my condition was so severe that I was blue-lighted to Royal Papworth Hospital, a specialist heart hospital in Cambridge.

Choosing my new heart valve

When I arrived, I was told my mitral valve was damaged beyond repair and needed to be replaced.

With little time to think, I had to choose between a biological or mechanical valve.

I chose a mechanical valve, because I was advised it would last longer, even though it meant I would have to take warfarin, a blood-thinning medicine, for life to prevent blood clots.

I went into open heart surgery the next morning. I was so unwell I couldn’t even process what was happening. I just wanted to survive.

Waking up after surgery felt surreal. I was exhausted, but already felt better than I had in many months.

Within days I was able to get out of bed. Friends and family were amazed at how quickly I improved.

Hearing my heart valve ‘tick’

I needed 6 weeks of antibiotics via a drip in both Papworth and James Paget hospitals.

When I got home, I stayed with Emily, her husband James and my grandchildren, Isabel, Benjamin and Sammy, for a month.

At first, I couldn’t lift a plate without feeling a pulling in my chest. But I was determined to get my fitness back. Two and a half months after surgery, I walked half a mile with Isabel.

By January 2023, life was almost back to normal. I went back to my choir and started walking Ethel again.

It took time to get used to my new heart valve. I hear it ticking sometimes, which is normal.

When my grandson Sammy first heard it, I told him, ‘I've got something special in my heart’. It’s a bit scary to think this little metal device is keeping me alive.

Now I've got a replacement valve, I'm more at risk of getting endocarditis again. It made me feel quite paranoid. When I started gardening again, I wore rubber gloves to stop myself getting scratched. I’m more relaxed now, but I still wear gardening gloves.

In November 2024, I had another stroke. I became confused while visiting my daughter and was rushed to hospital, where I had a seizure and needed intensive care.

The stroke left me with epilepsy, and I now have to take daily anti-seizure medicine. It was a frightening setback. I hated being back in hospital. But with the support of my family, I slowly regained my independence.

Sewing sharpens my mind

To help recover from my stroke, I wanted to stimulate my brain, so I started going to a sewing group.

At first, I couldn’t even remember how to thread a sewing machine. But with the help of the group, I’ve made a new blouse.

I also started drawing again and joined a musical theatre group.

I used to get anxious about singing in shows. My legs would feel like jelly. But now I’ve got more confidence – I just get up and do it.

I feel very fortunate to still be here. Every day is a gift, and I want to make the most out of life.”

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