I was so tired I had to nap all the time but doctors discovered I had 20% chance of survival
TEENAGERS are often accused of being a little bit lazy and Charlotte Carney was no different.
Charlotte, who lives in Northwich, Cheshire would constantly need a nap and it wasn’t until she moved away to university that she thought something could be seriously wrong.
In 2015 she moved to Liverpool to study forensic psychology and criminal justice at Liverpool John Moores University.
But soon after, she started to struggle to walk even five minutes into campus.
Despite being active, Charlotte missed the majority of her classes in her first year at the university.
She explained: "I did ballet and later I went to the gym. I just thought I loved to sleep, which I still do today.
"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."
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She also started to have chest pains and was too tired to go out, which made her feel lazy as she was unable to commit to the classes she had signed up for.
But Charlotte had still been going to the gym, so struggled to understand why she was struggling to get up the hill.
This difficulty to even just walk meant that Charlotte was unable to bond with anyone at university as she was unable to walk and follow her peers to class.
Plagued by the symptoms of breathlessness, Charlotte went to see her GP who said that it was likely her symptoms were down to the stress of her course work.
But the reality was much worse and soon after, Charlotte was diagnosed with an 'incredibly rare' heart condition, Restrictive Cardiomyopathy, which would mean she had just a 20 per cent chance of survival.
Before her diagnosis in the Summer of 2016 Charlotte and her boyfriend Ciaran went on holiday to Barcelona.
What is Cardiomyopathy?
Cardiomyopathy is a disease of the heart muscle.
There are three main types:- dilated cardiomyopathy, where the heart muscle becomes thin and stretched- hypertrophic cardiomyopathy, where the heart muscle thickens- restrictive cardiomyopathy, where the heart muscle stiffens.
Common symptoms of heart failure, include:
– a cough
– breathing problems, particularly at night or when lying down
– loss of appetite
– swelling of the abdomen
– swelling of the feet and ankles
– uneven or rapid pulse
Less common signs include:
– chest pain
– inability to concentrate
– low urine output
– a need to pee at night (in adults)
Are there treatments?
Few treatments are known to work for restrictive cardiomyopathy.
Drugs to thin the blood, chemotherapy and medication to prevent or control an abnormal heart beat are all options. But, a heart transplant may be considered in severe cases.
What's the prognosis?
People diagnosed with the condition often develop heart failure that gets worse.
Typically, survival after diagnosis is poor, unless a successful transplant is performed.
Charlotte still struggled and was having to nap a lot and it was then she said she knew something was "seriously wrong".
By chance, back home, her friend Debbie Dixon was running a charity screening on behalf of Cardiac Risk in the Young (CRY), not far from their home, where she had a check-up which immediately raised concerns.
Charlotte 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."
It was October 2016 when she had an echocardiogram (ECG) to monitor her heart, as well as CT scans, x-rays, MRIs, and more than 100 blood tests.
And she was barely able to process her diagnosis when cardiologists told her that she had the "incredibly rare" condition.
Affecting around 7,000 people in the UK, according to the charity Cardiomyopathy UK, it means the heart cannot fill up properly with blood.
'MY OWN LITTLE WORLD'
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.
Overwhelmed, she said: "At the time I was in my own little world, I was just focused on my exams.
"But in the background, I would be getting taxis to hospital.
"I just tried to get on with it in a logical manner and pretend it wasn’t really happening.
"The first time it really hit me that it was bad was when the doctor rang me while I was in uni and told me I had a clot and needed to buy blood thinners from Boots."
Because of her condition she decided to move home to Cheshire.
In January 2017 Charlotte was told that there was no cure for her condition, the terrifying reality of her situation hit her.
She said: "It was all a bit hard to navigate at 20.
"I remember having an appointment in January and they told me it was restrictive cardiomyopathy, which has no cure."
Months later in August 2017 Charlotte was asked to go to Wythenshawe Hospital – one of five heart transplant hospitals in the UK.
Charlotte had a range of tests which looked at how well her heart could pump blood and she was told she would need a life-saving operation rather than treatment.
Medics told her that there were complications from transplants and that even if she had one, her quality of life might not be great.
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
By February 2018 she was on the heart transplant list and this took a huge mental toll on her.
Just days after making a televised appeal to encourage more transplants, Charlotte went under the knife on February 28.
Charlotte spent seven days in a coma before she slowly started to regain consciousness.
She said: "My first memory was on day 7 but it’s still blurry. My dad just told me what day it was.
"I think it was a Tuesday when I went in, and he told me it was Monday, so I was so confused."
A few months after the operation, Charlotte moved in with Ciaran, while she says she was still experiencing pain, she had never felt so free.
"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", she said.
In September 2018 Charlotte went back to university and graduated with a 2:1.
After graduating, Charlotte and Ciaran spent some time today in Greece and in July 2019 Ciaran proposed to Charlotte.
She said yes and the couple will be getting married in Tuscany this summer.
Charlotte 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.
So far the two friends have raised £250 of there £800 goal.
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