Carer put on 6st in six weeks after doctors failed to notice fatal heart condition

A carer who piled on six stone in six weeks was told to do ‘more with her feet and less with her mouth’ by bungling doctors who failed to diagnose her fatal heart condition.

Katie Denial, 29, first went to see her GP in autumn 2013 after noticing the rapid weight gain and was prescribed antidepressants, diagnosed with anxiety and even accused of over-eating despite having no history of either.

At one point Katie saw her GP 13 times in one month alone, only to be given an asthma inhaler after her lung capacity was tested.

She was subjected to ECGs and X-rays and repeatedly given the all clear. But little did anyone know that as her health continued to fail over the next two years her undiagnosed cardiomyopathy was progressing.

The condition is the number one cause of sudden adult death in young people and it is estimated that one in 300 adults suffers with it.

Newly released figures from charity Cardiomyopathy UK estimate that more than 180,000 patients’ and family members’ lives are being left at risk due to shocking failures and delays in diagnosis, with only 13 per cent of sufferers experiencing the recommended care pathway.

The same figure also had to wait four to 12 months to see a cardiologist.

Cardiomyopathy does not show on x-rays, only CT scans, and with lack of medic awareness it is often missed.

Katie said: ‘I’d recently come back from a holiday in Benidorm where I’d fit into all my normal size 16-18 clothes and within weeks, my weight had ballooned from 15st to over 21st.

‘I’d always been curvy but this weight gain didn’t make any sense.’

Katie joined her local Slimming World group with mum Angela coming along for moral support.

But while Angela’s weight came down, Katie’s didn’t budge.

‘I stuck rigidly to the plan and was ashamed every week when I stepped on the scales and saw a gain,’ she said.

‘It made me look like a liar so I left after five weeks of feeling mortified.’

She returned to her GP and described how quickly she’d put the weight on and her increasing difficulties with breathlessness, fatigue, inability to lay flat at night along with her racing heart.

Katie, who had an active and physically demanding job as a carer in a residential home for children and adults with learning disabilities, struggled to keep up with colleagues and was given paperwork to do instead.

She recalled how her condition became so dire that she once lay down in a car park, unable to reach the driver’s seat of her car.

Similarly, she could also no longer climb up the steep stairs in her terraced Sheffield home and was forced to urinate in the garden.

She said: ‘I became a shell of my former self. Walking any distance was impossible, and I felt dizzy, breathless and suffered chest-pain all the time.’

Each time she was given the all-clear, her undiagnosed cardiomyopathy was developing.

Katie’s relationships with loved ones deteriorated alongside her ailing health.

By October 2014, she had been due to be her sister’s bridesmaid.

But with her weight still creeping up, she’d already outgrown the dress younger sister Becky, a nurse, had bought.

‘Nobody believed me when I said I wasn’t over-eating or secretly bingeing,’ Katie added.

‘It was a difficult time because as well as feeling horrific physically, neither my doctors or my family believed me.’

Katie’s GP put her on anti-depressants, blaming her chest pain on anxiety, and even told her to do ‘more with her feet and less with her mouth’ in order to see a difference in her health.

Her mum and sister became so afraid she’d eat herself to death they staged a family intervention.

‘I came home one night a few months before Becky’s wedding and found her and Mum in my lounge,’ Katie recalled.

‘They wanted to help get my eating under control because they were so worried about my health.

‘But it just really upset me that they didn’t believe I wasn’t secretly binge-eating. It caused a big rift and I pulled out of the wedding.’

A month before the big day in April 2015, Katie was rushed to hospital by ambulance with chest pain and numbness in her hands and face.

After undergoing a CT scan, doctors could finally see her heart was enlarged and spot the blood clots in her left lung and left ventricle due to dilated cardiomyopathy.

Katie was admitted to the coronary unit and blasted with clot busting drugs, medication to support her heart and water tablets to remove the excess fluid from her body – the true cause of her weight gain all along.

Medics also drained three litres of fluid from her lungs.

In the eight weeks she was an in-patient, and on the correct medication for cardiomyopathy, Katie lost eight stone.

She missed Becky’s wedding but forgave her family for not believing her, with the three ladies now all admitting the difficult episode has brought their family closer together.

Katie has since been forced to medically retire and move back in with her parents.

In addition, the medication to remove the extra fluid isn’t working very well, causing her weight to fluctuate from week to week, impacting her mobility.

There is no cure for cardiomyopathy and any delay in diagnosis impacts patients massively.

In time, it is possible that Katie’s condition with deteriorate so much that she’ll be placed on the transplant list for a donated heart, though nobody can predict that for certain.

She said: ‘Before my diagnosis, the doctors had such tunnel vision because I was a young woman. They refused to think outside the box and decided it had to be depression and over-eating.

‘Had they done a little extra testing with a CT scan or VQ testing to spot the clots, I might have come off this better.’

Joel Rose, Chief Executive at Cardiomyopathy UK, added: ‘It’s vital we raise awareness of cardiomyopathy so no individual has an experience like Katie’s.

‘We need to work together to ensure cardiomyopathy symptoms– heart palpitations, tiredness, breathlessness, swelling in the abdomen or ankles, pain in the chest and dizziness or fainting – are spotted, and patients receive the right tests, treatment, specialist care and support, which could save lives.

‘A diagnosis of cardiomyopathy can be life-changing. But with the right treatment and support, people living with cardiomyopathy can live full and active lives.’

Dr Gerry Carr-White, Consultant Cardiologist at Guy’s and St Thomas’s Hospital, said: ‘It’s clear where we are falling down in treating cardiomyopathy patients, and we need to work in a different way to improve outcomes for these patients and their families.

‘We have to work across networks, train more specialists in inherited cardiac disease, and improve education across both primary and secondary care.

‘These issues can only be addressed by appropriate funding and national prioritisation.’

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