Doctors said she would be dead by 21, but a miracle gift saved her

Julia Furey needed a kidney transplant. Photo / Supplied

Most teenagers feel as if they have their entire lives ahead of them, but for Julia Furey it was a different story.

The Sydney resident was diagnosed with focal segmental glomerulosclerosis (FSGS) when she was just eight years old and by the time she was 15, her kidneys had started to fail.

"The normal diagnosis for FSGS is that you fall ill in middle age but we all fell ill before the age of 30," Ms Furey told news.com.au.

Ms Furey and two of her three siblings all have the rare genetic disease, which causes kidney failure.

"A normal kidney will take toxic waste out of the body but ours was effectively poisoning our bodies," she said.

At the time she first started getting sick, she just felt like she had the flu but the symptoms gradually got worse.

"I had swelling in my face, my neck, my back and legs. I couldn't fit my feet in my shoes and sometimes I couldn't open my eyes in the morning, I looked like a werewolf."

Doctors tried treating her with anti-rejection drugs to stop or delay the organ failure, she also had a steroid blast but nothing worked.

Her kidney function plummeted from about 80 per cent to under 20 per cent.

Ms Furey began peritoneal dialysis, which involved getting a tube attached to her stomach that took the toxins out of the peritoneum and replaced it with clean fluid.

"I had to have dialysis either four times a day, or I could do it continuously for up to 12 hours at night," she said.

The once-fit athlete who enjoyed cross country running and netball, transformed into someone who could not walk, and had to use calipers and a wheelchair to get around.

"I was hooked up to dialysis for eight to 12 hours a day, I couldn't walk, I couldn't work and at one point I didn't even want to look at myself in the mirror," she said.

"I was not having a good quality of life, I was very frail and I'd lost so much weight."

When Ms Furey turned 18, she decided to go on the waiting list for an organ donation. But even though she would have been at the top of the list because of her age and good health before she got sick, she was still waiting for a kidney a year later and time was running out.

Julia Furey (left) with her sister Carla who also needed a kidney transplant. Photo / Facebook

"The doctors didn't think I would make it to my 21st (birthday)," she said.

"I thought I was going to die waiting and I can't deny we even started thinking about whether we could get an organ somewhere else — on the black market — even though it was illegal and unethical. We were that desperate."

Luckily for Ms Furey, two of her uncles and a cousin volunteered to do the testing to see if they were a match.

Doctors didn't want Ms Furey's immediate family to donate because they weren't sure if there would be complications due to the genetic history. At the time, donors also had to have the same blood type, which made it harder to find a match (this is no longer necessary).

Ms Furey's uncle was found to be a match and agreed to donate one of his kidneys.

"I'm so lucky and it's thanks to my uncle," Ms Furey said. "He is such a legend. He's the hero of the story without a doubt."

Donating a kidney is a difficult and painful operation and Ms Furey describes it as a "truly altruistic" gift that has changed her life.

After six months in rehab where she learned how to walk again, she finished university and found a full-time job. Now aged in her early 30s, Ms Furey said the transplant has allowed her to live a full life.

"I went back to playing netball, to socialising and dating. It's been incredible and it's thanks to my uncle," she said. "I've got a 63-year-old kidney in my body and I'm so lucky."

Incredibly, her two siblings were also able to find donor matches among their friends.

After going through so many transplants themselves, Ms Furey said her entire family were big supporters of organ donation and were all signed up to be organ donors.

"It's really had to think about your own mortality but please think about it and know your gift is not in vain," she said.

"It will be cherished and live on in another person. It will allow them to live a life they never thought they would live."