Camden Park transplant recipient encourages families to speak about organ donation

Grateful: Hillie Higson is forever grateful to her donor's family for their life-saving gift. Picture: Chris Lane
Grateful: Hillie Higson is forever grateful to her donor's family for their life-saving gift. Picture: Chris Lane

Hillie Higson will never have the words to thank the family that saved her life.

The Camden Park resident was the grateful recipient of a new set of lungs two years ago, and is filled with gratitude for the family of her donor.

"I've heard from the donor family - I wrote to them and they wrote back," the 61-year-old said.

"I'm in the process of trying to write back. It's a very emotional thing.

"My donor was a woman only about five years younger than me. Her family made the decision, after she'd suffered a haemorrhage, to donate her life. And because of that I'm still here."

Ms Higson is sharing her personal transplant story to encourage everyone in the community to have a conversation with their own family about their organ and tissue donation wishes.

Ms Higson was diagnosed with a lung condition in 2004, which went downhill quickly in 2015 when she developed a rare auto-immune disease called scleroderma.

"I started to deteriorate very quickly," she said.

"I was on oxygen for about three and a half years, isolated at home. It took two years of testing before St Vincent's Hospital would accept me on the transplant waiting list. Because of my auto-immune disease, it really was extraordinary that they accepted me. I waited nine months for the transplant."

And it wasn't all smooth sailing after Ms Higson received her new lungs.

"It was a hard slog," she said.

"Firstly, it was so scary going in. But I just had no other option, I had been given a one per cent survival rate. They didn't think I would make it to Christmas that year.

"I didn't respond very well out of the surgery and I was in a coma for six weeks. I didn't come home for three months after that.

"Thank goodness for my family - the support they gave, the encouragement, made all the difference. They kept saying, 'you got a great set of lungs'."

Ms Higson went in for her transplant surgery on September 18, 2018 and couldn't believe it when she woke up more than a month later.

"I remember waking up and looking at the clock and seeing it was October, and I thought, 'what'," she said.

"It was terrifying. I was on tube feeding, a respirator and I was on dialysis.

"I needed to learn slowly how to breathe again, without oxygen, how to swallow, how to eat, how to walk."

Ms Higson said with her auto-immune disease, it was also important to keep warm at all times, as limited bloodflow to the extremities of the body creates a numbing effect, similar to frostbite.

Now that she is past the worst of her condition, she is enjoying everything she can do in life.

"Two years post-transplant and I've been doing very very well, considering my auto-immune disease," she said.

"I've got six grandchildren, and it just dawned on me on the weekend, that I could sing Happy Birthday to my granddaughter - I haven't been able to do that for years.

"My eldest grandchild said to me, we've had two years with you we never though we'd have.

"You can't live without breathing. I've defied the odds, by the grace of a donor that a family had given me that opportunity to live."

Ms Higson said it was so important for families to discuss their organ donation wishes.

"People need to know your wishes," she said.

"Registering with DonateLife is one thing, that's easy, but your family also needs to know.

"If you don't talk to your family, your next of kin can say 'no' - that's why it's so important they know what you want to do.

"Please, talk to your family about donating organs and tissue. Some people think because they're elderly, or they're not young and fit, that you can't donate, but that's just not true.

"Tissue donation now is as important as organ donation.

"You cannot underestimate what a donation can mean to another person.

"It's important that we keep this flag flying, because organ donation is on the rise, but it needs to keep increasing.

"We've got this incredible technology and wonderful medical teams. We are so lucky to be in a country where we have this opportunity."

Visit donatelife.gov.au for more information on organ and tissue donation.