On bad days, Ksenia Borodin gets exhausted just getting out of bed and walking the few metres to her kitchen.
She avoids stairs as much as she can and sometimes even talking leaves her breathless.
At just 22, doctors have told her a heart and double-lung transplant is her only option for long-term survival.
But the part-time Brisbane law student, who was born with complex heart problems, says she has never felt like giving up amid a lifetime of "near-death experiences".
"I just kind of go along with my day," she said.
"I just think, if it's meant to be, it'll be, and, if I'm going to go, I'll go — none of us makes it out of here alive.
Mater cardiologist Mugur Nicolae said Ms Borodin was born with a large hole in the centre of her heart and problems with the valves that control blood flow — a condition known medically as a complete atrioventricular canal defect.
"Instead of having a four-chamber heart, she essentially has a two-chamber heart," Dr Nicolae said.
The condition results in extra blood flow to the lungs, forcing the heart and lungs to work harder than usual.
Breathless all the time
As a 19-month-old baby, Ms Borodin had surgery to place a band around her pulmonary artery, diminishing the blood flow to her lungs.
"The band is still there and, unfortunately, she's outgrown the band," Dr Nicolae said.
"That band has become so tight now that it's causing severe narrowing of the pulmonary artery."
At the same time, her heart has enlarged and she experiences frequent abnormal heart rhythms.
"She's breathless all the time. Her lung function is very poor," Dr Nicolae said.
Not all patients are deemed suitable for a transplant, but after rigorous assessments at the Prince Charles Hospital in Brisbane — home of Queensland's only heart-lung transplant centre — Dr Nicolae is hopeful Ms Borodin will be placed on the waiting list for donor organs some time this year.
Because of her petite size and her O-negative blood type — only found in about 9 per cent of the population — she may have to wait up to two years for a suitable match.
"Hopefully, we'll be able to get her through this next two years until she gets her transplant," Dr Nicolae said.
But there are no guarantees.
'Dicey times'
Earlier this year, Ms Borodin was admitted to the Mater Private Hospital's intensive care unit, with her heart specialist admitting he feared for her life.
"A couple of times were dicey times — she was very, very sick," Dr Nicolae said.
Until she receives the call that matching donor organs have been found, Ms Borodin has a lot to live for.
Her older sister, Rebecca, is due to give birth in August and she is excited to meet her niece or nephew.
She has tickets to a Yungblud concert in July and is hopeful of catching up with the British singer again after meeting him when he was last in Brisbane in 2019.
"I've been to a lot of concerts and any time one of my favourite artists is coming, I'm always like: 'I'm going to buy tickets. I could be dead tomorrow'," she said.
Invisible disabilities
Long-term, the part-time worker at a Brisbane law firm hopes to finish her law degree.
She is also passionate about fighting for the rights of people with invisible disabilities after being verbally abused herself when parking in disabled car spaces.
"I have a disability pass and I genuinely have disabilities," she said.
"I will park in a disabled spot … and just get verbally assaulted.
"People will be like, 'You're not even disabled, you can't park there.' I'll try to explain things to them and I just get scoffed at.
"That's really difficult and I feel like there's a lot of ignorance around it.
"I'm kind of, I guess, wanting to talk about it a bit more because I feel like I have nothing to lose now."
'Don't assume'
Her message to people when they see someone who is not in a wheelchair using a disabled car space or a disabled toilet is: "Don't assume."
"Only 4.4 per cent of people with a disability are actually in a wheelchair," she said.
As a teenager who was bullied at school, Ms Borodin tried to conceal her illness behind makeup, using lipstick and nail polish to mask the deep blue of her lips and blue finger nails caused by much-lower-than-normal oxygen levels in her blood.
These days, she only occasionally wears lipstick, no longer wishing to cover up evidence of her heart disease.
But people will often compliment her on the colour of her lips, without realising it's a sign of ill health.
"People are like, 'I love your lipstick, which one are you wearing?'" she said.
"I'm like, 'It's natural. I'm sorry I can't give you an exact colour.'"
The 'forgotten' group with heart defects
Ms Borodin is one of about 650 people cared for by the Mater's Congenital Cardiology Service.
The number is growing as more children with heart defects survive into adulthood.
Dr Nicolae described young adults with cardiac defects as a "forgotten" group, with the focus usually on much older heart-attack patients.
"There are at least 60-70,000 adult congenital heart disease patients in Australia and they require long-term care and follow-up with specialist cardiologists, nurses, psychologists and surgeons," he said.
Mater cardiology clinical nurse consultant Wendy Senior said young people with congenital heart problems faced issues most others their age would never have to confront, such as whether they would ever have children.
"That's a very tricky thing to navigate sometimes for them," Ms Senior said.
"I'm sure that question comes up for Ksenia as well. It's probably not feasible at the moment, but looking into the future, we would love to be able to support her if that's what she wants."
For now, Dr Nicolae has ruled that out.
"She's been asking me repeatedly if she can have kids," he said.
"I've said, 'No, it's going to be exceedingly high risk for you.'
"Obviously, that's distressing to tell that to a young girl but, with a heart and lung transplant, potentially, that's a possibility."
Whatever happens moving forward, even the chance of having a heart-lung transplant has given Ms Borodin a priceless gift.
