Kayleigh Cuthbert.
Kayleigh Cuthbert.

Awful diagnosis after ‘normal’ check-up

Most people remember their 18th and 21st birthdays for being celebrations with friends and family but not Kayleigh Cuthbert.

Instead of feeling anticipation for the future as she embarked on her adult life, Kayleigh faced uncertainty at what lay ahead.

The day before her 18th birthday, Kayleigh was given news that many teenagers would find overwhelming and led her to have four surgeries in six days.

"I basically went to the doctor for a normal check-up and they realised I had high blood pressure," she told news.com.au.

"They sent my bloods away for testing and noticed my kidney levels weren't that fantastic.

"After more tests and a biopsy, they confirmed I had kidney failure.

"It was pretty shocking, as nothing like that had gone through my family. I was the first one, and I was wondering how this happened."

Ironically, when she turned 18 years old, Kayleigh was able to stop taking medication for liver failure diagnosed when she was five years old. She hadn't needed a liver transplant and managed the condition with medication.

Now Kayleigh was facing a much more serious problem.

"I was quite shocked because I had just finished high school," she said.

"I was quite fine for a while and I didn't think of the worst, of needing a transplant so soon."

Despite Kayleigh's kidney diagnosis, doctors didn't expect her to require a transplant for 10 to 20 years. Unfortunately they turned out to be wrong.

"About one-and-a-half years later I got quite unwell and got end-stage renal failure," Kayleigh said.

Kayleigh Cuthbert was diagnosed with end-stage kidney failure at age 19.
Kayleigh Cuthbert was diagnosed with end-stage kidney failure at age 19.

Both Kayleigh's parents ended up having to donate their kidneys because of issues with her first transplant.

Kayleigh wasn't compatible with either of her parent's kidneys so they joined the Australian Kidney Exchange (AKX) program.

Even though finding a match on the exchange can be difficult, Kayleigh was able to find a compatible kidney with someone whose partner was also a match for her mother's kidney.

However, their excitement turned to horror when about four days after the transplant in 2017 a blood clot appeared in Kayleigh's leg.

"I still can't find the words to describe how I felt, even over a year later," she said.

"I had to be operated on (to remove the clot) and then the day after I went for some scans to see if there were more clots. Unfortunately, the worst happened and there was another one.

"I had to go into emergency surgery to remove the second clot but unfortunately that stopped the blood going to the kidney, so it technically died.

"I had four surgeries within six days. It was definitely one of the hardest times for myself and that my family has been through.

"Especially afterwards I had to go on haemodialysis, so I was in hospital three times a week nearly all day. It was my new normality that I had to get used to."

Kayleigh’s mum donated her kidney to someone on the Australian Kidney Exchange so that Kayleigh could get a matching organ.
Kayleigh’s mum donated her kidney to someone on the Australian Kidney Exchange so that Kayleigh could get a matching organ.

Kayleigh spent about eight months on dialysis before another kidney match was found for her. This time it was her dad who would go under the knife to give his daughter another chance at life.

Kayleigh had the surgery in December 2018, just two days after her 21st birthday.

"It was amazing and also came right before Christmas," she said.

Just over seven months later and Kayleigh is back working in aged care and also plans to study a diploma of nursing after being inspired by her experience.

"I would like to be a dialysis nurse," she said. "I'm looking forward to being able to help people in similar situations that I've been through.

"I'm extremely lucky, and I'm even more lucky that I got a match so quickly from the first transplant to the second transplant."

Kayleigh said many people her age didn't think about becoming an organ donor.

"It's not a common topic that gets brought up, and only 62 per cent of people surveyed who are willing to be organ donors have talked to their family about it," she said.

In Australia people can register to be organ donors from the age of 16 years old.

But just 8.1 per cent of those aged 16-25 are currently on the Australian Organ Donor Register.

"This latest research suggests there could be around one million young Australians who are keen to register but haven't," Organ and Tissue Authority chief executive officer Lucinda Barry said.

News.com.au is supporting DonateLife week again after last year's Take a Minute, Save a Life campaign contributed to a huge increase in organ donations and transplants in 2018.

RELATED: Sign up to be an organ donor

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Kayleigh Cuthbert finally had a successful transplant in 2018.
Kayleigh Cuthbert finally had a successful transplant in 2018.

Research done by YouGov Galaxy found about 30 per cent of young Australians aged 18-25 had not considered whether they wanted to and another third didn't know how to go about it. The others had been put off by common organ and tissue donation myths.

"One of the most common myths about organ donation is people thinking they can't donate because of their lifestyle choices, are too old or sick to become a donor," Ms Barry said.

"People who smoke, drink or don't have the healthiest lifestyle can still donate. You don't have to be in perfect health to save lives.

"We encourage you to register and let a doctor make the decision if you would be a suitable donor when the time comes."

Are you an organ donor? Why or why not? Comment below.

 

 

 

Kayleigh’s dad also donated his kidney.
Kayleigh’s dad also donated his kidney.