Woman’s ‘laziness’ turned out to be rare heart condition

·Contributor, Yahoo Life UK
·5-min read
Carney before her transplant (Collect/PA Real Life)
Carney before her transplant (Collect/PA Real Life)

A woman who was constantly accused of "laziness" because of her need to nap actually turned out to have an "incredibly rare" heart condition.

Charlotte Carney, 25, from Northwich, Cheshire, has been diagnosed with restrictive cardiomyopathy, an incurable condition, which means her heart does not beat properly.

Despite being given only a 20% chance of survival without a new heart, a life-saving transplant means the account manager is now looking forward to marrying her high school sweetheart, Ciaran Hughes, 26, this summer.

In her teens, Carney was continuously accused of being lazy because of her need to nap, but when she started studying forensic psychology and criminal justice at Liverpool John Moores University in 2015, she realised something was wrong, as she struggled to walk even five minutes into campus.

Read more: Eating oily fish linked to reduced risk of heart attacks and strokes

Carney suffered years of breathlessness and difficulty walking long distances (Collect/PA Real Life)
Carney suffered years of breathlessness and difficulty walking long distances (Collect/PA Real Life)

“I used to nap a lot, but at university I couldn’t even walk up the hill to go to my classes," she explains.

“My heart was beating mega fast and I would be exhausted and out of breath from a five minute walk.

“Even I started to think I was lazy, as I couldn’t commit to the classes.

“I still went to the gym, so I didn’t understand why I couldn’t make it up the hill without struggling."

Carney also started suffering from chest pains, breathlessness and found it increasingly difficult to attend lectures or get to the shops near her home.

She saw her GP on two separate occasions, who suspected her symptoms resulted from the stress of her course.

Read more: Mum who had a heart attack aged 45 warns women to look out for the symptoms she ignored

Just days after appearing on ITV's This Morning campaigning for organ donation to be an opt-out system, Carney was rushed for a 10 hour heart transplant operation. (Collect/PA Real Life)
Just days after appearing on ITV's This Morning campaigning for organ donation to be an opt-out system, Carney was rushed for a 10 hour heart transplant operation. (Collect/PA Real Life)

In the summer of 2016, Carney went on holiday to Barcelona in Spain with her boyfriend Ciaran.

But the frequency of Carney’s naps meant they could not enjoy the sights or even dinner without her needing to doze off.

“I was incredibly out of breath, had chest pains. I had to sleep in the middle of the day, then again before dinner," she explains.

Back home, a friend of Carney's was running a charity screening on behalf of Cardiac Risk in the Young (CRY), which she attended, having a check-up which immediately raised concerns.

Carney was referred to a cardiologist, and in January 2017 following an echocardiogram (ECG) to monitor her heart, CT scans, X-rays, MRIs, and more than 100 blood tests, she was told she had the “incredibly rare” condition restrictive cardiomyopathy.

Watch: British girl receives heart revived outside body

Affecting around 7,000 people in the UK, according to the charity Cardiomyopathy UK, the condition means the heart cannot fill up properly with blood.

It results in reduced blood flow from the heart and can lead to symptoms of heart failure, such as breathlessness, tiredness and heart rhythm problems.

“It was all a bit hard to navigate at 20," she says of the diagnosis.

“They told me it was restrictive cardiomyopathy, which has no cure.”

Carney in hospital. (Collect/PA Real Life)
Carney in hospital. (Collect/PA Real Life)

Later that year Carney had an exercise test, where patients are asked to run on a treadmill until their heart cannot take any more, in order to register how well it functions, and her results were far worse than doctors had anticipated.

Her cardiac output, or how well her heart can pump blood, went down from 63% of the normal level – already low – to just 41%.

“They told me I would need a life-saving operation, not treatment," Carney explains.

“They set the scene, saying that people had complications from transplants, so even if I had one, life wouldn’t necessarily be great.

She added: “When I did have one, it all happened so fast, which was a good thing because I don’t think we realised just how poorly I was.”

Charlotte Carney and  and Ciaran Hughes plan to tie the knot in August this year. (Collect/PA Real Life)
Charlotte Carney and and Ciaran Hughes plan to tie the knot in August this year. (Collect/PA Real Life)

By February 2018, Carney was on a waiting list for a heart transplant, and by at the end of the month, just days after making a television appeal to encourage more transplants, a heart donor was found and Carney went under the knife.

After a ten hour operation and seven days in a coma, Carney regained consciousness and began her road to recovery.

"I was still in a lot of pain," she explains.

“My brain fog was gone. Even though I was in a worse state, I felt tons better.

“I knew I was exhausted from what happened, not from just from existing.

“I could breathe again.”

In September 2018, Carney felt fit enough to start her third year of university and the following summer she graduated with a 2:1, which she describes as the proudest moment of her life, after thinking she would have to quit due to her condition.

"I never had a more exciting day than when I walked on that stage to graduate,” she says of the moment.

Having moved in with her boyfriend just after her transplant, the couple are now looking forward to tying the knot this summer in Tuscany.

“It’s been brilliant, to go from such a dark place to where I am now to getting married to the love of my life," she says.

“If I’m ever having a rough day, I remind myself I’m doing all right as I’m still here."

Read more: Girl with deadly heart condition home for Christmas after transplant

Diagnosed with a life-threatening condition, Carney, pictured here with her fiancé Ciaran Hughes. (Collect/PA Real Life)
Diagnosed with a life-threatening condition, Carney, pictured here with her fiancé Ciaran Hughes. (Collect/PA Real Life)

Carney says having a transplant has helped her to put everything in perspective.

“I’m so grateful for all the support I’ve had," she says.

“And now I can celebrate everything with everyone I love."

To raise money for the charity Cardiomyopathy UK, Carney and her best friend Amy Toolis, 25, are taking on the Three Peaks Challenge.

You can donate here.

Additional reporting PA Real Life.

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