Bobby Sims was 22 and working as a shearer in the back country when he was diagnosed with incurable polycystic kidney disease. His doctor’s advice was to go and enjoy life.
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Eleven years later he started dialysis. He had both kidneys removed at 36. Had a kidney transplant at 45. That failed. He’s now 55.
Every day of his life for the past 33 years Bobby’s had to watch what he eats and drinks and every other day he has to manually remove the waste from his body.
He’s pretty much done it all; the trips to Canberra that sometimes took two days to return from, he’s self managed at home, he’s used manual bags. He’s also seen the quiet deterioration of other patients who have been on the same journey. Some of them are now dead.
Nowadays Bobby spends up to six hours three days a week holed up at Young’s self managed renal unit located at the western edge of the Young District Hospital compound - his right arm and leg have pronounced gortex loops that allow him to insert large needles that remove the waste from his body at a rate of 500 ml per hour.
The self managed unit was funded through a $120,000 community fundraising effort and $75,000 from NSW Health, opening to patients in November 2011.
At the time Bobby was the only patient using it and he said it allowed him to spend more time with his family. He said his life was halfway to normal.
Now, life isn’t so normal. His health’s deterioriating and his body is starting to wear out.
He’s had a couple of scares where he’s been choppered over to Canberra - the last time his lungs were full of fluid and he couldn’t breathe.
“I called 000, ran the blood back into my body and then blacked out - three hours later I woke up in emergency in Canberra Hospital,” he said.
Bobby thinks he’ll soon have to join the other patients who leave Young by bus at 4.30am three days a week to journey to Canberra for dialysis.
But it means he can have four litres of fluid removed in four hours.
He says the trips to Canberra take their toll.
“It’s hard on them,” he said, “they start out all chirpy and by the end of 12 months they have aged considerably.
“I’ve been on that bus and even have saved a few patients who passed out because they’ve had too much fluid taken out of their body,” he said.
The recent reversal of the decision to house a managed renal unit in Young has been, to Bobby, like a kick in the guts.
“There was a meeting four years ago and we were promised a unit, so I feel like we’ve been stabbed in the back - they may as well line us up and shoot us now,” he said.
“I’ve got no problems with Cowra getting a unit but why should those helping us go over the boundary fence and help others,” he asked.
He was the first to raise the alarm in Young. He tried to speak to Nationals Senator Fiona Nash and said the first person he encountered tried to rip down everything he said.
“But two days later Senator Nash called back and said she would be sending a letter to Katrina Hodgkinson and the state health minister on my behalf,” he said.
“I’ve written to a lot of politicians in my time and it’s the first time I’ve got an answer,” he said.
He cannot understand why every town in Victoria has a renal unit and are funding a Big Red Kidney Bus to allow dialysis patients to take holidays.
“The state government supports them better than us,” he said.
He doesn’t mince words either. He’d be more than happy to see the person who decided not to allow Young a managed renal unit to suffer kidney failure and live life hooked up to a dialysis machine.
“That’s what I want,” he said.
And he hopes the Young community gets behind the petition circulating around town.
“I think it’s a great thing to have this support for our cause and I want to thank the council for getting behind it and all the local people in town for helping us out,” he said.
He was particularly thankful to Mark Sheridan and Frank Baker for all they have done to get support for renal patients in Young. And he’s disappointed all their efforts of late have come to naught.
“We were told we were getting it by the people running the show and we were waiting for the final ok - even people in Canberra are telling us we need a renal unit - and this happens,” he said.
“I wish the powers that be would get their act together and they would listen to us and give us what we need,” Bobby said.
