A Batemans Bay man who weighs about 50kg and is constantly hungry has been told he is too heavy to receive a vital nutritional drip to help him put on weight.
Last week the health department pulled the plug on Gary Humpherston’s total parenteral nutrition (TPN) drip, which he receives when he becomes severely underweight, and told him he needs to lose another six kilos to be eligible.
Mr Humpherston suffers from pancreatitis and diabetes, and his partner - Jane Boege - said receiving TPN was the only way he could put on weight.
Mr Humpherston survives off fruit poppers and a liquid form of food that feeds into his intestines through a tube to keep his daily kilojoule count up. Eating causes him severe pain and his condition means he is always malnourished and starving hungry.
“If I had hair, I’d be pulling it out,” Mr Humpherston said. “I’m starving.”
When he’s severely underweight, Hospital in the Home feeds him a TPN drip, used to help patients put on weight, but last month the couple was told the service would stop his TPN treatment.
A doctor said it was a funding issue and Mr Humpherston didn’t need it - but he would if he lost six kilos, which would take his weight to 44kg.
Mr Humpherston said all he wanted was to get to 65kg.
“I want to be able to get a transplant,” he said. “But I’ve got to fight with what I’ve got.”
Ms Boege said a transplant wasn’t an option because his body was not strong enough. The couple just wants answers and to know where they stand.
“We feel like we’re lost in the medical system down here,” Ms Boege said.
“This government has so much to answer for. If I did that to a dog I’d be locked up.
“I don’t see why he has to get worse before he gets better.
“He doesn’t want to die, he’s not ready. He’s only 48. I’d like to keep him alive.”
Ms Boege said she’d be willing to pay for the vital TPN, but she simply can’t afford to - each bag costs about $70.
Despite the troubles, Ms Boege said the hospital service and doctors weren’t to blame.
“The hospital has been absolutely brilliant, they’ve bent over backwards to help him,” she said. “But I just need to take it further to keep him alive.”
She can’t understand why money seems to come before people’s lives.
“It just amazes me we can spend all this money overseas but yet our health system is falling to bits.”
The couple travels the four hours to Sydney every six weeks for pain management because specialists aren’t available in the area.
“We have been doing this for about eight years,” Ms Boege said. “It takes so much out of him, it takes quite a few days to recover.”
When he was diagnosed, Mr Humpherston was given three months to live. Eleven years later, he is still fighting.
“He’s always hungry, he’s starving the whole time,” Ms Boege said.
But eating is out of the question.
Ms Boege described the extreme pain as being “like childbirth”.
“Sometimes when it [the starvation] gets so bad he eats something, but then he says ‘why did I do that’.
“He doesn’t eat anything at all. He hasn’t eaten for three years now because of the pain it causes.
“It’s been a battle the whole way through.”
Despite the problems they constantly face, Mr Humpherston “soldiers on”.
“He doesn’t want to give up,” Ms Boege said.
The Bay Post/Moruya Examiner sought comment from the Southern NSW Local Health District about Mr Humpherston’s situation.
A spokesman said: “Access to Total Parenteral Nutrition in the Eurobodalla is excellent, and the decision not to provide TPN at the moment is a clinical decision, taking into account the significant risk of the procedure.
“This decision is reviewed regularly for this patient as TPN can be started again when the benefit outweighs the risk.”