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A woman was given a 20 percent chance of survival after being diagnosed with an ‘incredibly rare’ heart condition, which had originally been mistaken for ‘laziness’.
Charlotte Carney, 25, couldn’t understand why she always felt so tired and needed constant naps, but a chance screening in 2016 found that she actually had restrictive cardiomyopathy, an incurable condition meaning her heart does not beat properly.
After being told that she only had a 20 percent chance of living for more than two years without a new heart, she was added to the transplant list in February 2018, and later that month eventually found herself being rushed to Manchester’s Wythenshawe Hospital for a 10-hour heart transplant operation, after which she was in a coma for seven days.
Carney, an account manager, was accused of being lazy in her teens because of her need to nap all the time, but it was when she started studying forensic psychology and criminal justice in 2015 at Liverpool John Moores University that she realised something was wrong.
She said she had ‘always been active’ but ended up missing most of her classes in her first year.
Carney said: “I used to nap a lot, but at university I couldn’t even walk up the hill to go to my classes.
“My heart was beating mega fast and I would be exhausted and out of breath from a five minute walk.”
She also started having chest pains and found it increasingly difficult to go to any lectures.
Carney continued: “Even I started to think I was lazy, as I couldn’t commit to the classes.
“It was so difficult. I didn’t bond with anyone at university, because I couldn’t even follow people to classes, which made me feel embarrassed.”
Luckily, Carney's friend Debbie Dixon was running a charity screening on behalf of Cardiac Risk in the Young (CRY), and by chance she had an all-important check-up – which immediately raised concerns.
She said: “At that point, some days I’d be fine, some I wouldn’t be. So, on the good days, I’d forget about it.
“But my mum asked me to go to the screening, just in case.
“So, I did and they said they would do another check and refer me to a cardiologist, but they were really vague and chilled.”
Still not suspecting anything too sinister, Carney – who thought she was asthmatic for a decade before her diagnosis – went to Liverpool Heart and Chest Hospital feeling fairly relaxed.
But when she had an echocardiogram (ECG) to monitor her heart, as well as CT scans, x-rays, MRIs, and more than 100 blood tests, cardiologists told her she had the ‘incredibly rare’ condition restrictive cardiomyopathy.
According to the charity Cardiomyopathy UK, the condition affects around 7,000 people in the UK.
As 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.
Carney was told there was no cure for her condition, devastating news that was ‘all a bit hard to navigate’ when she was just 20.
However, in August 2017, she was asked to go to the nearby Wythenshawe Hospital – one of five heart transplant hospitals in the UK – so that she could meet the team who would potentially save her life further down the line.
Carney said: “They told me they couldn’t guarantee a good outcome."
After being added to the transplant list, Carney was finally able to go under the knife on 28 February 2018.
She said she was ‘still in a lot of pain’ when she went home after the successful op, but felt much better.
Carney recalled: “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."
In September that year, she felt fit enough to start her third year at university and graduated the following summer with a 2:1.
The summer after graduation, Carney’s boyfriend proposed to her, and the two will be getting married in August this year.
Carney said: “It’s been brilliant, to go from such a dark place to where I am now – getting married to the love of my life.
“If I’m ever having a rough day, I remind myself I’m doing all right as I’m still here.”
Carney said the support from Cardiomyopathy UK in the past four years have been invaluable, and her best friend Amy Toolis, 25, is taking on the Three Peaks Challenge to raise money for the charity. You can donate here.
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