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‘My disability is invisible, but the truth is I’m dying’: Aussie uni student’s pain laid bare

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After pulling into an accessible parking spot, 22-year-old Ksenia Borodin steps out of her car – only to be verbally confronted.

The Brisbane university student is frequently the target of contemptuous comments such as “You’re not disabled” and “Where’s your wheelchair?”

WATCH THE VIDEO ABOVE: Ksenia’s life with congenital heart disease

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Outwardly, Ksenia appears to be a healthy young woman.

“But the truth is, I am dying,” she tells 7Life.

“My disability is invisible, but my reality is that I am in heart failure.”

Ksenia is sharing her story so others living with invisible disabilities know they aren’t alone. Credit: Ksenia Borodin

The part-time law student was born with a lengthy list of cardiac issues: complex cyanotic congenital heart disease and five heart defects.

She has recently been given the heartbreaking news that – due to the rarity of her condition – even a heart and double lung transplant would not be medically feasible.

Put bluntly, she is out of options.

“I have had to accept my own mortality,” she bravely reveals.

“I am dying but I am thriving.

“I have always been told I would die young. I mean, I am scared of dying but not because of me – because of the people around me.”

Born to die

Ksenia was born with a hole in her heart’s upper chambers, an unusual connection between her lower chambers, abnormal blood flow through the heart and pulmonary hypertension.

“My body isn’t like a normal person’s. The plumbing of my heart is just completely different,” she explains.

Ksenia was born with a complex cyanotic congenital heart disease and five heart defects. Credit: Ksenia Borodin

Her parents were told their little girl wouldn’t make it past the age of two.

In order to survive, Ksenia needed an extremely high-risk surgery – with just 30 per cent chance of success.

With no other choice, her parents agreed for their 19-month-old daughter to undergo the dangerous heart operation.

It was to be the first of many surgical “wins”.

At 16, Ksenia had her bowel removed and an ileostomy bag fitted.

She also had various other successful surgeries to improve her quality of life.

A giant scar, spanning from the middle of her back to her armpit, is testament to one such operation.

At 19 months old Ksenia underwent invasive heart surgery and survived. Credit: Ksenia Borodin

The incredible woman explains that her various heart defects often leave her breathless and her skin tinged blue from low oxygen levels.

Exercise is out of the question.

Talking – and even sitting for long periods of time – can leave her bed bound for days later.

“One time I was at my friend’s party and I was sitting down the whole time, but for the next two days I physically couldn’t walk,” she recalls.

‘What now’

Devastatingly, the heart surgery that saved her life as a toddler is now causing her lungs to die.

“A band was put on my pulmonary artery but it is now too tight because I’ve obviously grown and it’s now restricting blood flow to my lungs,” she explains.

With the pressure growing in her organs, the young woman had 1.5 litres of fluid drained from her lungs just to keep her breathing.

Now 22, Ksenia has been told a heart and double lung transplant is most likely too risky. Credit: Ksenia Borodin

Specialists had been considering a heart and double lung transplant in a bid to give Ksenia the gift of extending her life.

But she quickly received shattering news.

“I am not great on the cardiac side of things,” she says, revealing medical experts are no longer recommending the organ surgery.

“A transplant was my only option. If not then, what now?”

As she tries to process the news, her life is in “limbo”.

The university student has been in and out of hospital since she was born. Credit: Ksenia Borodin

“I can feel how irregular my heartbeat is,” she says, touching on her ticking mortality.

“But I have decided I am going to live everyday and not worry about having this hanging over me.

“Like, f*** it, I could be dead tomorrow.”

Invisible illnesses

Despite not knowing if she will wake up the next day, Ksenia has decided to try to live with a smile on her face.

“I hear my friends talking about their futures and four-year plans,” she says.

“It’s weird because I don’t even think four weeks or four months ahead because I don’t know how long I have.”

Ksenia is using her precious time to promote the importance of invisible illnesses.

The 22-year-old is living every day in the now. Credit: Ksenia Borodin

For a start, she wants people to stop avoiding the word disability.

“Disabled isn’t a bad word. I’m disabled,” she says.

“I guess it’s pretty invisible though.”

Sadly, she is frequently the subject of comments that she is not “sick enough” to use an accessible toilet or parking spot.

“Just because someone isn’t in a wheelchair doesn’t mean they aren’t disabled,” she says.

For now, the brave woman is taking every day as it comes.

“People ask me how I am, and I answer them seriously and nobody knows how to react – everyone is scared of death,” she adds.

“My mum always tells me that out of everyone, I have a reason to cry and I don’t have to pretend that I am okay.

“I spend a lot of my time making jokes about it.

“It is getting more and more difficult.

“But if I don’t laugh, I’ll cry.”

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Source: 7News