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 transplant waiting list just over 12 months ago and has been on the lookout for the ‘miracle call’ ever since doctors to say it’s his turn.
“It’s like waiting to win the lottery,” she told FEMAIL.
The former administration worker isn’t sure how long she has left if she doesn’t get a transplant, but doctors say it could be as little as 12 months or a few years.
Her biggest fear is not getting 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 has to pass for me to receive a heart,” Cara said.
Cara Curan (left) fears she will die before marrying her fiancé Pavel Bartos (right) in June 2023 if she does not receive a critical heart transplant
The 38-year-old (pictured) has had five heart surgeries since being diagnosed at birth with pulmonary atresia, a type of heart condition, where the right valve that controls blood flow to the lungs fails to form not right, leaving the person with half a working heart
Cara (right) was not expected to live long, but when she was six months old doctors carried out a ‘corrective’ procedure which would finally give her more time.
Cara has suffered since birth from a heart condition called pulmonary atresia which required five heart surgeries.
Pulmonary atresia is a birth defect where the right valve that controls blood flow to the lungs does not form properly, leaving the person with a half functioning heart.
Doctors don’t know what causes the disease and there is no cure.
“In the 1980s the condition was rare for that time – I don’t think many doctors in Australia saw babies with it,” Cara said.
Cara (pictured as a baby after surgery) had her first heart surgery at three days old and then another at six days old
Cara had her first heart operation when she was three days old and then another when she was six days old, but doctors didn’t expect her to live any longer as she needed a transplant heart and lung.
Six months later, she was proving the doctors wrong and her mother made the life-changing decision to go ahead with a new ‘corrective’ procedure that would ultimately give her daughter more time.
Cara had an artificial valve placed on the right side of her heart – and to everyone’s surprise, it worked perfectly.
“I was blessed with a pretty normal childhood and wasn’t brought up thinking I was different from everyone else despite having a huge scar on my chest,” Cara said.
“Dad always joked that I was in a ‘zipper club,'” she said with a laugh.
Once a year her mother would drive her to a hospital in Sydney for a check-up and doctors ‘couldn’t explain’ why she was doing so well.
Cara began to fall ill again in 2005 at the age of 21 and had to undergo a fourth heart surgery to replace the pulmonary valve.
“After that I felt the best I had ever felt in my life; the artificial valve I put in as a baby hadn’t grown so I basically had a six-month-old’s valve all the time,” Cara said.
For the next 12 years she enjoyed life, traveled across 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 ‘little changes’, such as fatigue, but the symptoms swept away.
That year, she underwent a fifth surgery – a two-way Glenn shunt procedure – to “redirect blood flow to the lungs” and remove pressure from the right side of the heart.
Cara Curan has enjoyed life after surgery, traveled across America (pictured at the Grand Canyon), met her partner in Canada, lived in New Zealand, backpacked in Asia and met her fiancé’s family in the Czech Republic
The former administration worker then started having trouble keeping food down, felt increasingly tired and bloated, and her stomach was so big it “looked like she was pregnant with nine. month”.
Cara’s cardiologist says she needs a new heart and put her on the transplant waiting list 12 months ago, so never goes anywhere without a good phone signal, sleeps with her cell phone turned on and cannot miss a call
For the next 14 months, she was hospitalized and discharged with symptoms that doctors missed after never fully recovering from the fifth mammoth operation.
“I woke up in intensive care and immediately knew something was wrong, but the doctors were very happy with the result,” she said.
“I was also told not to get pregnant because it would kill me, which I found difficult to deal with and I wish they had told me sooner,” she said, adding “I would have explored options like freezing my eggs sooner.”
Cara began to struggle to keep food down, felt increasingly tired and bloated, and her belly was so big it “looked like she was nine months pregnant.”
His body was falling into heart failure. Her stomach was filled with three liters of blood because her heart wasn’t pumping it around her body.
Cara had the blood drained and she was placed in medically-induced soria with doctors saying she might also need a liver transplant.
She has been ‘stabilized’ with drugs 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 without a good phone signal, sleeps with her cellphone 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 poor reception,” Cara said, adding, “In a way, it’s a real privilege of being on a waiting 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-sided 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 lungs is thus blocked. Due to this defect, blood from the right side of the heart is prevented from reaching the lungs to pick up oxygen.
As with most congenital heart diseases, there is no known cause for pulmonary atresia.
The condition is linked to another type of congenital heart defect called persistent ductus arteriosus (PDA).
Pulmonary atresia can occur with or without a ventricular septal defect (VSD).
- If the person does not have 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. It is an extreme form of the tetralogy of Fallot.
Source: Medline Plus
Cara’s new heart needs to be the right size, shape, and type of tissue, but even then her body could reject the organ due to its excessively high antibody count.
She has not lost hope and thinks positive. She stopped working in her administrative job to focus on her health and enjoying life.
Cara hopes her story will not only raise awareness of pulmonary atresia, but hopes others will consider becoming organ donors.
“Living with a terminal illness doesn’t define you, get on with living your life,” she said.
“And before you decide to become an organ donor, talk to your family so they are aware of your wishes.”
If you would like to register to become an organ donor or would like more information, Click here.