But Darwin sisters Kate Cheong-Wing and Emma Pollard, who inherited the same genetic disorder and have had to undergo kidney transplants, said they were never that worried for themselves.

Rather, each instead held concern for the other.

“I’m more worried for your upcoming transplant than for my own well being,” said Emma to her older sister, who will soon be undergoing transplant number four.

Having both undergone dialysis and kidney transplants, Kate said it’s made them and their parents really close.

“She’s my best friend,” Kate said.

“I can just ring up Emma and go, ‘I’m having a crap day today because of this’.

Dialysis during school lunch break

Emma still remembers the day 34 years ago she got her diagnosis at seven years old.

But more because she thought her mum had found out she was playing a banned game of marbles at school.

Emma was put on peritoneal dialysis which helps remove waste products from the blood as her kidney had very little function left.

“At school, mum used to come in and help me dialyse during lunch break,” she said.

“Being in Darwin, I thought I was the lucky kid to get to come into the airconditioning at lunchtime.

“I think it was just a good age and I had amazing parents and a support network around me to normalise it.”

At the time their parents Tricia and Jeff got tested to see if they were a match as a kidney donor for Emma, but both were ruled out.

Thankfully 18 months later, the family got the call that a good match for Emma from a deceased donor had been found.

Emma went for the operation and the transformation was immediate; her skin’s jaundiced tone disappearing.

“You could actually see the transformation,” Tricia said.

“It’s incredible; the colour comes back, she had a sparkle in the eye and new energy kicked in within 24 hours.”

That was 32 years ago, and Emma said she was very fortunate the kidney was such a good match and it adapted well to her body.

“Before, my body was unwell,” she said.

“Then the transplant happened and I had this beautiful new lease of life.”

A stomach bug in Alice Springs spelled the end for Kate’s transplant

For Kate, her story was very different.

When her health started to decline in her teens, she was tested and found to have the same disease as Emma.

She went on peritoneal dialysis for about 18 months before getting a deceased donor transplant at 14.

Unfortunately for Kate, it was not the last time she would need a new kidney.

Nine years later, she and her now husband Matt were visiting Alice Springs for a volleyball tournament when they picked up a stomach bug.

Matt was sick for three days but Kate ended up spending six weeks in hospital.

“It was just one of those combinations of bad luck,” she said.

“We had an instance where I was no longer getting immunosuppressant effectively so my immune system became active and kicked the kidney out.”

She ended up losing the transplant, was moved onto haemodialysis and ended up having a lot of problems, at one point ending up in a wheelchair.

“I think that was probably my hardest time,” she said.

“I got a little bit depressed for a while with all the issues that were going on and at that point, I didn’t have a transplant booked in and so there was a little bit of that no light at the end of the tunnel feeling.”

Transplant a rollercoaster of gratitude and grief

Kate eventually had another transplant, but two years after the new kidney began having issues, and six years later it failed.

It was at this time Kate and her dad, who were in different blood groups, considered seeing if they could be a match for a transplant.

After undergoing rigorous testing, it was found they were a good match but “not great” so they decided to go into the paired kidney exchange.

The program is when there are two people, one in need of a transplant and one willing to donate a kidney, enter and then are matched with other people around Australia to see if there are any compatible swaps.

“It’s pretty amazing,” Kate said.

“We had a three way swap in my chain.”

Kate has been living with her third transplant for seven and a half years, but unfortunately it recently failed.

Emma’s is also slowly starting to fail, due to its age.

Kate has been back on dialysis since January and is hoping to do another kidney swap, this time with her husband Matt.

Kate said they often get asked if it feels strange to be living with someone else’s organ.

“The only way I think about it myself is just thankful for a family for making that choice,” she said.

“You feel really sorry for the family that had to go through that … but then you’re incredibly grateful that they did, or incredibly grateful for someone like my dad who did it.”

Careers spanning NT Police forensics and global conservationist

Despite generally feeling a “touch unwell” at all times, Kate and Emma have not let this stop them from pursuing their careers.

Emma has travelled and worked as a conservationist around the globe, spending five years in Cambodia at a Wildlife Rehab Center, and also carrying out government contracts in Australia between travels.

Any trip Emma carries out always has to be well planned and her suitcase is always full with medication, and a doctor’s note.

Every year she tries to travel to a different country to celebrate her birthday and transplant anniversary.

“I have to plan taking medication with me and having emergencies in place if I get super dehydrated or I get an illness,” she said.

Kate has been working with NT Police as a forensic biologist for 22 years.

Her love of science comes in handy as she examines DNA from crime scenes, DNA profiles and give evidence in court.

She said her family culture and her parents’ approach has also helped.

“I think naturally we’re both very positive and resilient people and we’ve had that instilled from Mum and Dad,” she said.

“But also as a family, we have always talked about things so a topic doesn’t seem off limits.

“As a result I do talk a lot, but that’s a positive thing, because it means I can help deal with things.

“The police have quite good wellbeing services as well and have been very supportive.”

DonateLife week

Emma and Kate wanted to share their stories during DonateLife Week running from Sunday July 27 to Sunday August 3.

With 1,800 people on a waitlist for an organ transplant across Australia and around 900 people in the NT on dialysis, the campaign aims to raise awareness for organ and tissue donation.

In Australia, residents have to opt-in to be an organ donor.

The family said there were still ways to contribute while people are still here.

Between Tricia and Jeff, they have donated bags of blood and plasma over the years even before their daughters were diagnosed.

“Donating a kidney was not that much different,” said Jeff.

“You can live quite well on one kidney as the girls have proven, mine was eight years ago.

“If you’re thinking about live donation just register and do it.”

For organ donor registration, he urged people to speak to their families.

Megan Newman from DonateLife said having those hard conversations ahead of time with family and taking time to register can save lives.

“On average, we lose one person every week waiting for an organ transplant, and one organ donor can save the lives of up to seven people.

To register as an organ and tissue donor, visit donatelife.gov.au or register through Medicare.