‘I felt like Frankenstein’: What it’s like to wait for an organ donation

Clare Duggan was spending hours a day on dialysis and giving up on life when she received a precious gift from a stranger.

At the age of six, Clare Duggan was diagnosed with type 1 diabetes.

A string of serious illnesses followed including rheumatoid arthritis, an underactive thyroid, and medical-induced lupus.

In 2011, Clare was devastated when she experienced kidney failure and dialysis became her lifeline.

“Being so ill as I was growing up, I always felt older than my years,” says Clare, 34, of Perth in Western Australia.

“After I left school, my world imploded. I rebelled and didn’t take care of myself and I became sicker and physically broken down.”

The worst was yet to come

In 2010, during a holiday in Thailand, Clare developed the first of a series of serious urinary tract infections and ended up in hospital.

After a year or so of infections, Clare was referred to a kidney specialist.

“He told me I had kidney failure, I had to start dialysis and I would need a kidney transplant,” recalls Clare.

“That came out of the blue for me. I had to dig my fingernails into my leg to try and stay calm. The room turned upside down and I left his room and broke down in tears.”

Clare struggled with dialysis and chose peritoneal dialysis via a long tube from her stomach. She was on dialysis for 10 hours a night.

clare duggan
Clare Duggan

‘I found the dialysis unsightly – I felt like Frankenstein’

“I couldn’t wear tight clothes because you’d see the tube,” says Claire.

“I had to be in bed by a certain time each night to do the dialysis and if the machine broke down, I felt awful.

“My life was on hold. I couldn’t make plans, even for the short term. I couldn’t go on holiday and I tried to date but that never worked out.

“On a day when I felt well, I could go to the local shopping centre and have a sandwich. I felt very isolated.”

Clare lived in limbo, knowing her future depended on a stranger – an organ donor.

A life-changing phone call

In 2016, that gift arrived when Clare had a pancreas and kidney transplant because, by then, her pancreas was damaged by diabetes.

“My phone rang at three o’clock one morning. Then mum’s phone rang and then mine rang again,” says Clare.

“It was the transplant team telling me they had a donor and I had to be in Sydney within a few hours.

“As soon as I hung up, I vomited with nerves.”

Clare’s six-hour operation went smoothly. Very quickly she began to feel more energetic and her diabetes disappeared.

She was able to study and work again and is now studying nursing as a way of honouring her donor and their family.

“I feel happy about my life now, but I also feel sad that someone lost their life. For a long time, I didn’t feel worthy of such a gift,” says Clare.

“If someone hadn’t become a donor for me, I probably wouldn’t be alive today. I am thankful every day.”

clare duggan
Clare Duggan after her transplant

The facts about organ donation

  • 7 million Australians aged 16 plus are registered organ donors.
  • There are more than 1400 Australians waiting for a life-saving transplant.
  • One organ and tissue donor can save and transform the lives of many people.
  • Last year, 1782 lives were transformed by 554 deceased and 238 living organ donors. A further 10,500 Australians benefited from eye and tissue transplants.
  • Since the national organ donor program began in 2009, more than 11,000 Australians’ lives have been saved by an organ transplant.

DonateLife Week is from July 28 to August 4. Show your support by registering as an organ and tissue donor and then talking about your decision with your family and friends.

More personal stories:

Written by Sarah Marinos.