Cara Curan needs a new heart or she may 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 since been on edge for doctors’ ‘miracle call’ to say it’s her turn.
“It’s like waiting to win the lottery,” she told FEMAIL.
The former administrative assistant isn’t sure how much time 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 that she won’t get 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 die before I can get a heart,” Cara said.
Cara Curan (left) fears she will die before marrying 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 he was diagnosed at birth with pulmonary atresia, a type of heart disease in which the right valve that controls blood flow to the lungs doesn’t form properly, leaving the person with a half-working heart.
Cara (right) wasn’t expected to live long, but when she was six months old, doctors performed a “corrective” procedure that would eventually give her more time
Since birth, Cara has suffered from a persistent heart disease called pulmonary atresia, which required five open-heart surgeries.
Pulmonary atresia is a birth defect in which the right valve that controls blood flow to the lungs does not form properly, leaving the person with a half-working heart.
Doctors aren’t sure what causes the disease and there is no cure.
“In the 1980s, the condition was rare at the time — I don’t think many doctors in Australia had seen babies with it,” Cara said.
Cara (pictured as a baby after surgery) had two open heart surgeries when she was just six days old
Cara had two open heart surgeries when she was just six days old, but doctors didn’t expect her to live much longer because she needed a heart and lung transplant.
Six months later, proving doctors wrong, her mother made the life-changing decision to go ahead with a new “corrective” procedure that would eventually give her daughter more time.
Cara had an artificial 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 brought up to think I was different from anyone else, despite having a huge scar on my chest,” Cara said.
“Daddy always joked that I was just part of a ‘zip club,'” she said with a laugh.
Once a year her mother took her to a hospital in Sydney for a check-up and the doctors ‘couldn’t explain’ why she was doing so well.
Cara started getting sick again in 2005 at age 21 and required a fourth heart surgery to replace the pulmonary valve.
“After that I felt the best I’d ever felt in my life; the artificial valve I had put in when I was a baby hadn’t grown, so I basically had a six-month-old’s valve the whole time,” Cara said.
For the next 12 years, she enjoyed life, traveling across America, meeting her partner in Canada, living in New Zealand, backpacking Asia and meeting her fiancé’s family in the Czech Republic.
Cara returned to Australia with her partner in 2017 when she started noticing ‘minor changes’ such as fatigue, but brushed off the symptoms.
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 enjoyed life after the surgeries, touring America (pictured at the Grand Canyon), meeting her partner in Canada, living in New Zealand, backpacking Asia and meeting her fiancé’s family in the Czech Republic
The former administrative assistant later began to struggle to keep food down, continued to feel 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 a transplant waiting list 12 months ago, so never goes anywhere without a good phone signal, sleeps with her cell on and can’t miss a call
For the next 14 months, she was in and out of the hospital with symptoms that doctors missed after never fully recovered from mammoth’s fifth surgery.
“I woke up in the ICU and knew right away that something wasn’t right, 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 hard to handle and I wish they had told me sooner,” she said, adding: “I would have explored options. like freezing my eggs before.’
Cara began to struggle to keep food down, kept feeling tired and bloated, and her stomach was so big it “looks like she’s nine months pregnant.”
Her body went into heart failure. Her stomach was filled with three liters of blood because her heart was not pumping it through her body.
Cara had the blood drained and she was placed in a medically induced sorose condition with doctors saying she may also need a liver transplant.
She was “stabilized” on drugs to support her organs until June 2021, but her cardiologist says she needs a heart transplant now or she will die.
Cara never goes anywhere where there is no good phone signal, sleeps with her cell phone 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’re somewhere with low reception,” Cara said, adding: “In a way, being on a waiting list is a real privilege. ‘
What Causes Pulmonary Atresia?
What is Pulmonary Atresia?
Pulmonary atresia is a form of heart disease in which the lung 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 controls blood flow from the right ventricle (right pumping chamber) to the lungs.
In pulmonary atresia, the valve leaflets are fused. This ensures that a firm sheet of tissue is formed where the valve opening should be.
This blocks normal blood flow to the lungs. Because of this defect, blood from the right side of the heart cannot reach the lungs to pick up oxygen.
As with most congenital heart disease, there is no known cause of lung atresia.
The condition is linked to another type of congenital heart defect called a patent 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. This is an extreme form of tetralogy of Fallot.
Source: Medline Plus
Cara’s new heart must be the right size, shape and tissue type, but even then her body may reject the organ because of her excessively high antibody count.
She has not lost hope and thinks positively. She stopped working in her administrative job to focus on her health and enjoy life.
Cara hopes her story will not only raise awareness about lung atresia, but hope that others will consider becoming organ donors.
“Living with a terminal condition doesn’t define you, keep living your life,” she said.
“And before you decide to become an organ donor, you should discuss this with your family so that they are aware of your wishes.”
If you would like to apply to become an organ donor or would like more information, Click here.