'I thought I was run down with pneumonia. Then doctors looked at my heart.'

Lauren Norton is stuck in limbo.

The mother-of-three lives each day anxiously waiting for her phone to ring hoping to hear one sentence: "We've found you a heart".

"I lie awake because I'm on the transplant list and I could get a call at any time," she tells Mamamia.

"If I get my call today, am I ready? I don't know."

Lauren was diagnosed Tricuspid Artesia, a congenital heart disease that limits the blood flow through the heart, as a baby, and it has controlled her life ever since.

At four months old, Lauren underwent open heart surgery. Then again at nine and 20 years old.

Now, at 42, a heart transplant is her "one saving grace".

"Mum and Dad were always told when I was little a heart transplant was on the cards, but I've defied all of the odds continually throughout my life," she said.

"I'm facing their ultimate fear that this would one day become a reality. I'm on 'the list'."

Currently, about 1,800 Australians are on a waiting list for an organ transplant and another 14,000 people are on dialysis — many of whom could benefit from a kidney transplant, according to Donate Life.

Yet only two per cent of people who die in hospital each year can be considered for organ donation.

"There's people who have been on the list a day, a week. There's people who have been on the list for six years," Lauren said.

It means when there finally is a match, you can't miss that opportunity.

Watch: Mum-of-three waiting for a heart transplant. Post continues below.

In the two decades since her last open heart surgery, Lauren avoided other major heart problems.

"I was working full-time, running my three kids around at school… I ran businesses," she said.

That all came to a head in April, when Lauren woke up one morning with a chesty cough.

The Nelson Bay resident went to her GP, who "took one look" at her and rushed her to John Hunter Hospital in Newcastle.

She was diagnosed with pneumonia and a more sinister cause was revealed: her heart was in 50 per cent failure.

Lauren's condition only deteriorated from there.

Simple tasks such as buying groceries became too difficult.

"I got a pacemaker in May to regulate my heartbeat, and that seemed to work but it didn't fix the heart failure," Lauren said.

"I sat down with my cardiologist and they said there's no other alternative at this point."

Lauren's heart transplant surgery is expected to take at least 10 hours, followed by an extensive recovery.

"The total time from getting the call for my heart transplant to getting home is three to four months and that's without seeing my kids," Lauren said.

"I'm scared. I'm just terrified.

"Navigating this is enough for me as a 42-year-old woman, let alone helping them navigate it as best as I can without scaring them."

Her children, aged 10 to 14, are always at the front of her mind.

The concerned mother packed up their lives to move 2.5 hours away to Lake Cathai near Port Macquarie to be closer to family.

"When I get my call I literally have to just get up and leave the children and go and I wanted to have them settled in a new school, home, where they felt comfortable in their environment," Lauren said.

"They're my world."

She hopes to find another parent who has navigated a heart transplant with children to know she's not alone.

Mother-of-three Lauren Norton has been in and out of hospital as she waits for a heart transplant. Image: Supplied.

"A shell of a person"

Congenital heart disease is all Lauren has ever known.

She has never been able to play team sports or go to the gym and even had to resit a year of school after missing too many days.

Now, it's the mundane tasks that she struggles with most.

"I can't make the bed, I can't do general housework… I'm exhausted at the thought of doing anything but getting out of bed and getting the kids off to school," she said.

"I'm on 12 medications a day, twice daily just to keep my heart working at a capacity that's not going to hospitalise me.

"It's quite debilitating."

The 42-year-old had to stop work and relies on Centrelink payments to get by.

"I'm a shell of a person that I once was in April and that wasn't even that long ago. I struggle most days."

Lauren is not afraid to admit she is terrified of what is to come, but she believes the transplant will give her a "new lease on life".

In the meantime, she says: "You just have to live your life as best you can within the circumstances."

A fundraiser has been started to support Lauren and her family. You can contribute here.

Feature image: Supplied.