EVERY day still presents fresh challenges for Tamworth organ recipient Steve Gribbin, who received a life-saving liver transplant in January 2016.
A fresh lease on life from a new liver was of course a most welcome gift for Mr Gribbin since he was struck with hepatitis C in the late 1980’s, but his trials and tribulations highlight the difficulties that confront all regional organ recipients.
Mr Gribbin, an administration worker with Tamworth Council until his health deteriorated in June 2013, endured two false dawns before finally finding a successful match and receiving a transplant in January 2016.
“In 2015 got called down to Royal Prince Alfred hospital (Sydney) twice in one week. I drove down Sunday, but the liver was no good and I went home. Then on Thursday I was called in again and I went through to the anaesthetist’s table when the phone call came through, the liver was no good again,” Mr Gribbin said.
“So Christmas came and I had made funeral arrangements and said goodbyes to people. But in January I got another call, and that was the one.”
Travel time to transplant hospitals in major cities and accommodation costs, access to healthcare in recovery and the impact of it all on family and caregivers is an unwelcome, additional impost on regional transplant recipients.
“I spent 18 days in hospital and 10 weeks in Sydney all up. After that the doctors still wanted me to stay there but I wanted to come home, so I went down every two weeks for three months, then once a month and now it is less frequent,” Mr Gribbin said.
He runs a liver support group on social media, said there are more transplant recipients in regional areas than many of us realise and said funding for accommodation for major cities and healthcare support in recovery should be boosted.
“I know within three hours from me there are at least 15 people who have had transplants, it unusual at all.”
He said while some major hospitals offer accommodation to regional patients and families, it is not a universal provision. Mr Gribbin’s family's accommodation and travel costs topped $10,000 and many others struggle to meet the expense.
“My operation was during Chinese New Year and it was hard to find places. I ended up staying at the nearby university accommodation. It was hot, there was no fan or air conditioning, I had a huge wound and had be careful what I ate but there were not kitchen facilities,” he said.
Mr Gribbin said even in Tamworth, with a major regional hospital, he needed to keep in touch with surgeons and other specialists.
“We just need to have some sort of assistance for country patients beyond the status quo,” he said.
“For the first six months after the operation you worry about everything. You are on powerful immunosuppressant if you had local healthcare support, that would make it so much easier. You can call your specialists in the city, but they’re busy and they can’t always get back immediately.
“But you are stressed about making mistakes. Grapefruit juice counteracts immunosuppressants, so does the bergamot in Earl Grey tea. There are lots and lots of things like that you need to know.”
Mr Gribbin has thrown his support behind the Herd of Hope charity cattle drive, which plans to drive sponsored heifers across the Sydney Harbour Bridge on a Sunday morning to raise funds and awareness for organ donation and transplant recipient services.
“The disruption from the Herd of Hope would be nothing compared to the challenge of transplant recipient services in regional communities,” he said.
The event has stalled with the government department, Transport for NSW, which has baulked at the plans citing traffic concerns.
Event organiser and kidney and pancreas transplant recipient Megan McLoughlin, from the Barossa Valley in South Australia, and her supporters remain determined to find a way.
While significant strides have been made to increase donation rates, much more can be achieved.
The number of deceased donors has doubled since 2009 and transplant recipients have increased by 81 per cent. In 2016 1448 people received a transplant, nearly as many as the 1500 and 1600 people on the waiting list.
But Australia still sits at a lowly 22 in national rankings of organ donation rates – one of the lowest for a first world country - with just one in three people registered.
It is sobering fact, given regional residents can be thousands of kilometres from expert care and concerns remain that the transplant waiting list underestimates true demand, setting a lower standard for viable recipients than what could be the case, if more organ donors were registered.