Cara Curan needs a new heart or she might not live long enough to marry the man who stole hers.
The 38-year-old from Coffs Harbour, NSW, joined the waiting list for a transplant just over 12 months ago and has been on edge ever since for the ‘miracle call’ from doctors to say it is her turn.
‘It’s like waiting to win the lottery,’ she told FEMAIL.
The former administration worker isn’t sure exactly how much time she has left if she doesn’t receive a transplant but doctors say it could be as little as 12 months or a few years.
Her biggest fear is not receiving a new heart in time to walk down the aisle and marry the love of her life, Pavel Bartos, in June.
‘It’s a difficult situation because someone’s loved one needs to pass away in order for me to receive a heart,’ Cara said.
Cara Curan (left) fears she will die before she marries her fiancé Pavel Bartos (right) in June, 2023 if she doesn’t receive a critical heart transplant
The 38-year-old (pictured) has had five open heart surgeries since being diagnosed at birth with pulmonary atresia, a type of heart disease, where the right valve which controls blood flow to the lungs doesn’t form properly leaving the person with half a working heart
Cara (right) wasn’t expected to live long but when she was six months old doctors did a ‘corrective’ procedure that would ultimately give her more time
Cara has been suffering with an ongoing heart disease called pulmonary atresia since birth which has required five open heart surgeries.
Pulmonary atresia is a birth defect where the right valve which controls blood flow to the lungs doesn’t form properly leaving the person with half a working heart.
Doctors aren’t sure what causes the disease and there’s no cure.
‘In the 80s the condition was rare for the time – I don’t think many doctors in Australia had seen babies with it,’ Cara said.
Cara (pictured as a baby after surgery) underwent two open heart operations when she was just six days old
Cara underwent two open heart surgeries when she was just six days old but doctors didn’t expect her to live much longer as she needed a heart and lung transplant.
Six months later she was proving physicians wrong and her mum made the life-changing decision to go ahead with a new ‘corrective’ procedure that would ultimately give her daughter more time.
Cara had a manmade valve placed on the right side of the heart – and to everyone’s surprise, it worked perfectly.
‘I was blessed with a pretty normal childhood and wasn’t raised thinking I was different from anyone else despite having a huge scar down my chest,’ Cara said.
‘Dad always made the joke that I was just part of a “zipper club”,’ she said with a laugh.
Once a year, her mum would drive her to a Sydney hospital for a check-up and doctors ‘couldn’t explain’ why she was doing so well.
Cara began falling ill again in 2005 at age 21 and required a fourth heart surgery to replace the pulmonary valve.
‘After that I felt the best I had ever felt in my life; the manmade valve I had inserted when I was a baby hadn’t grown so I basically had the valve of a six-month-old the whole time,’ Cara said.
For the next 12 years she enjoyed life, travelled around America, met her partner in Canada, lived in New Zealand, backpacked around Asia and met her fiancé’s family in the Czech Republic.
Cara returned to Australia with her partner in 2017 when she started noticing ‘small changes’, such as tiredness, but brushed off the symptoms.
That year she had a fifth surgery – a bidirectional glenn shunt procedure – to ‘redirected blood flow to lungs’ and remove pressure from the right side of the heart.
Cara Curan enjoyed life after the surgeries, travelled around America (pictured at the Grand Canyon), met her partner in Canada, lived in New Zealand, backpacked around Asia and met her fiancé’s family in the Czech Republic
The former administration worker later started to struggle to keep food down, felt increasingly tired and bloated, and her stomach was so large it ‘looked like she was nine months pregnant’
Cara’s cardiologist says she needs a new heart and put her on the transplant waiting list 12 months ago so never goes anywhere that doesn’t have proper phone signal, sleeps with her mobile on and can’t miss a call
For the next 14 months she was in and out of hospital with symptoms the doctors missed after never fully recovering from the mammoth fifth operation.
‘I woke up in ICU and knew straight away something wasn’t right, but doctors were very happy with the outcome,’ she said.
‘I was also told to not fall pregnant because it would kill me, which I found hard to process and wish they had told me earlier,’ she said, adding: ‘I would’ve explored options like freezing my eggs earlier.’
Cara started to struggle to keep food down, felt increasingly tired and bloated, and her stomach was so large it ‘looked like she was nine months pregnant’.
Her body was going into heart failure. Her stomach was filled with three litres of blood because her the heart wasn’t pumping it around her body.
Cara had the blood drained and she was put into a medically-induced sorosis with doctors saying she may also need a liver transplant.
She was ‘stabilised’ with medication to support her organs until June 2021 but her cardiologist says she now needs a heart transplant or she will die.
Cara never goes anywhere that doesn’t have proper phone signal, sleeps with her mobile on and can’t miss a call.
‘We plan ahead and let the hospital know if we’re going away for a weekend or if we’ll be somewhere with low reception,’ Cara said, adding: ‘In a way it’s a real privilege to be on a wait list.’
What causes pulmonary atresia?
What is pulmonary atresia?
Pulmonary atresia is a form of heart disease in which the pulmonary valve does not form properly. It is present from birth (congenital heart disease).
The pulmonary valve is an opening on the right side of the heart that regulates blood flow from the right ventricle (right side pumping chamber) to the lungs.
In pulmonary atresia, the valve leaflets are fused. This causes a solid sheet of tissue to form where the valve opening should be.
Normal blood flow to the lung is blocked as a result. Because of this defect, blood from the right side of the heart is restricted from reaching the lungs to pick up oxygen.
As with most congenital heart diseases, there is no known cause of pulmonary atresia.
The condition is linked with another type of congenital heart defect called a patent ductus arteriosus (PDA).
Pulmonary atresia may occur with or without a ventricular septal defect (VSD).
- If the person does not have a VSD, the condition is called pulmonary atresia with intact ventricular septum (PA/IVS).
- If the person has both problems, the condition is called pulmonary atresia with VSD. This is an extreme form of tetralogy of Fallot.
Source: Medline Plus
Cara new heart needs to be the right size, shape, and tissue type but even then her body could reject the organ because of her excessively high count of antibodies.
She has not lost hope and thinks positive. She stopped working in her administration job to focus on her health and enjoy life.
Cara hopes her story will not only raise awareness about pulmonary atresia but hopes others will consider becoming organ donors.
‘Living with a terminal condition doesn’t define you, continue to live your life,’ she said.
‘And before deciding to become an organ donor, speak to your family about it so they are aware of your wishes.’
If you’d like to register to become an organ donor or are interested in finding more information, click here.
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