By Bronwyn Hastings

Horsham woman Nicole Wood, now 31, was an active and seemingly healthy girl, until the age of 12, when she was suddenly diagnosed with auto-immune hepatitis and had only days to live – unless a donor liver was found.

Ms Wood’s mother Judy Wood said she and husband Deane noticed few symptoms in the lead-up to the their daughter’s diagnosis.

“Nicole had abdominal pain, so we took her to the GP in Horsham,” she said.

“They knew something wasn’t right, but they weren’t sure what, so we took her to the emergency department. 

“They thought it was appendicitis, so they took her appendix out and we went home.”

Although Ms Wood was recovering well, she still ‘didn’t look right’, so Mrs Wood, a nurse, took her back to the emergency department.

“They thought it may have been a blood disease, so we had pathology done and we went home,” she said. 

“She was still in too much pain, so we went back to the hospital where she stayed for the night.”

The family, including son Stuart, who was about 10 years old at the time, went to Ballarat the following day, where they stayed the night. They then went on to Melbourne to the Royal Children’s Hospital.

“It was maybe the Friday when they worked out what was wrong – the doctors said without a transplant, by Sunday she would be dead,” Mrs Wood said.

“So, they put out a call for an organ. 

“I got the phone call about 11pm. Deane was across the road with Stuart, I couldn’t call him – I was so relieved but so distressed. I had to get our nurse to call him for me.

“They put you in touch with organ co-ordinators and I remember my first thought and saying to them, ‘what about all the other people who are waiting for organs?’ They told me we didn’t have time to wait, it didn’t matter. 

“The co-ordinator said it’s not jumping the list, it’s working on priority and assisting the individual.

“So that was Friday, and I remember that night, the head of the transplant team rang me at the hospital and said they’d found a donor, and that he would go and do the retrieval, and they’d do the surgery the next day.

“It’s bittersweet because you know someone’s family is mourning. 

“She got the transplant about three days after we got to Melbourne.

“The stars and the planets aligned – the blood types and tissue matched. It was just pure luck.”

The auto-immune disease in Ms Wood’s liver had gone unnoticed for a considerable amount of time, causing irreparable damage, but she remembers little of the experience.

“Honestly, I don’t remember a lot, it was quite sudden,” she said.

“I wasn’t a sick child.”

Ms Wood’s body recovered quite well – her spleen and other organs making up for her failing liver.

“Looking back, I can see I couldn’t do certain things – I remember we were climbing up Mt William, and I just couldn’t go any further, so I just stopped in the middle of the road. It all makes sense now.”

Post-transplant, Ms Wood still has the underlying condition auto-immune hepatitis, and with that comes symptoms including chronic fatigue, nausea and headaches.

“I’m limited in what I can and can’t do,” she said.

“I’ve been on medication since the transplant – quite a lot of it, and that took five or six years to get right. 

“One medication I was taking to help with anti-rejection was destroying my kidneys, and another one was destroying my bone marrow. 

“I was seeing lots of different doctors and going to consultations.

“We went to a hormone specialist, and I had a kidney doctor for a long time, you go anywhere and everywhere while you’re getting sorted out. 

“I can’t work full-time, it just becomes too much. 

“I get tired and run-down, I’m more susceptible to colds and common illnesses, and the symptoms will flare up if I get run-down and tired. It’s not a fun time.”

Ms Wood’s medication increases her risk of skin cancer, prompting annual skin checks, and increases the risk of osteoporosis, for which she has a bone scan every couple of years. 

“I have to accept the limitations and know I can’t do as much as I’d like,” she said.

“It gets frustrating, but it’s worth it, compared to the other outcome of not being here.

“It feels like such a long time ago now, I don’t remember a lot leading up to it, moreso after it in the hospital, and after we got back to the ward more than in intensive care, which is probably a blessing.”

Ms Wood’s immediate family are all registered organ and tissue donors.

Mrs Wood said without the ‘greatest gift’ given by a stranger, her daughter would not have survived.
“It’s good to have that conversation of organ and tissue donation with your family and other people,” Mrs Wood said.

“It’s so traumatic when people are faced with the decision in a difficult situation, and unless you know someone’s wishes, it’s hard.” 

Ms Wood said organ donation was often not something considered.

“Unless you know of someone who is sick, it’s not something you think about,” she said.

“A lot of people just don’t get around to registering, and some people may not be aware of how to do it.”

Ms Wood has worked at the Horsham hospital for about 10 years, and is now a clerk at Oxley ward. 

Mrs Wood is co-nurse unit manager at Oxley, which includes the hospital’s intensive care unit. 

When the hospital became Grampians Health in 2021, it introduced access to a donation specialist nurse, who provides oversight and support to the Horsham campus. 

The integrated model of care has given Grampians Health the potential to look at offering organ and tissue donation at Grampians Health Horsham because, like Ballarat, it has an intensive care unit.

DonateLife is promoting the 13th annual DonateLife Week, from July 28 to August 4, with the theme ‘be the reason someone else gets a second chance at life’. 

Anne Webster: Join the organ donation register

In Victoria last year...

The Australian Organ Donor Register last year shows –

• 40,454 people registered as organ and tissue donors on the Australian Organ Donor Register;

• 142 people died and became organ donors – down one per cent on the previous year;

• 361 people received organ transplants – down two per cent;

• 1800 people are on the organ waitlist;

• 14,000 people are on dialysis for kidney failure;

• 50 people died last year while on the transplant waitlist;

• Four in five Australians say they support donation, but only 36 per cent are registered.  

If an extra three million Australians were to register, about 100 more people would receive a life-saving organ transplant every year.

Currently, 2460 people in Ararat’s Local Government area have registered as organ and tissue donors; with 1155 people in Hindmarsh registered; 3982 in Horsham; 2581 in Northern Grampians; 894 in West Wimmera; and 1384 in Yarriambiack. 

People aged 16 years and older wanting to register as organ and tissue donors can register at donatelife.gov.au.

The entire July 31, 2024 edition of The Weekly Advertiser is available online. READ IT HERE!