Kerryn Barnett is hopeful that the pioneering surgery she had last month to implant a gastric pacemaker will save her from having to have her entire stomach removed.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
That was the only other option available to the Towradgi mother of three after she was struck down last year with a rare condition that paralysed her stomach muscles and forced her onto a liquid diet.
By March this year she had lost 15 kilograms from her already slight frame, had not been able to eat a solid meal since Christmas Day and suffered constant nausea and vomiting.
Sadly, while surgery to remove her stomach would have been covered by her health insurer Bupa, it has refused to cover the cost of the gastric pacemaker.
That's despite a massive community campaign to get Bupa to pay up, which includes an online petition which has so far garnered nearly 50,000 signatures.
For Mrs Barnett, the removal of her stomach and a life of being tube-fed was too horrible to contemplate, so she and husband Jeremy looked to a method called electrical pacing.
The surgery involves the implantation of a gastric pacemaker, or neurostimulator, which connects to the stomach via two leads, providing a mild electrical impulse to help the stomach muscles contract and move food along the gut.
Twenty-two Australians have had this surgery with an 80 per cent success rate - and that was good enough for Mrs Barnett.
The couple took out a loan for around $35,000 to pay for the device and leads and on April 17 Mrs Barnett underwent the surgery in Brisbane under leading gastrointestinal surgeon Dr Leslie Nathanson.
Nearly four weeks later the pain is starting to subside, and there are some positive signs of success.
"When I had the surgery I was just 44.2 kilograms but now I'm 46.5 kilograms and any increase in weight is great," she said.
"My bowel is starting to function a lot better - although I had a setback last weekend when I ended up in Wollongong Hospital with a bowel obstruction.
"But apart from that, the signs have all been good. I'm not feeling as fatigued, the nausea is much better and the vomiting has decreased."
It will be a slow process back to solid meals for Mrs Barnett, with the gastric pacemaker on the lowest of five settings.
"The surgery was more complicated than the doctor had thought - usually the pacemaker is implanted into the abdominal wall but because I had lost so much weight they had to cut through the muscles themselves to create a pocket to put the device in," she said.
"It will be a slow process over the next few months during which the device settings will be increased and food gradually reintroduced so my stomach is allowed time to heal.
"But the hope is that one day I might be able to have one to two solid meals a day and live as normal a life as possible.
"If my stomach was removed I would never be able to eat or drink anything ever again - not even water."
Bupa covered Mrs Barnett's theatre costs and hospital stay, but the device itself was not covered.
"Bupa played god here - my health was in their hands and they let me down," she said.
"If no insurer covered this I would accept it, but other private insurers are covering this device for this exact purpose."
The Illawarra community has rallied around the family, with a benefit night to be held at Fairy Meadow's Fraternity Club on May 22.
Supporters of Kerryn Barnett are calling on health insurer Bupa to refund the cost of her pacemaker after discovering the device is on the Department of Health's prostheses list.
When the Mercury first told Mrs Barnett's story in March, a Bupa spokeswoman claimed the pacemaker or neurostimulator was not covered as it was not on that list.
However, the Barnetts' friend, David Finlay, said once the family received the item number for the device, they were able to cross-reference that with the prostheses list.
The Medtronic Australasia InterStim Neurostimulator Model 3023 - item number MC719 - was clearly listed.
Mr Finlay, who launched a petition on change.org to plead with Bupa to cover the device, said Bupa had run out of excuses.
"Kerryn was told by Bupa that it wasn't covered because the surgery was experimental and because the device wasn't on the prostheses list," he said.
"But this surgery has been performed in Australia since 2000. It's rare - only one or two people have the surgery each year - but it's been proven to have a high level of success.
"And the exact device is on the list - it might be in the urogenital section rather than the gastrointestinal section but it's a device that has been approved.
"Other private insurers cover the cost of it - why won't Bupa fund it?"
Mr Finlay said while the cardiac pacemaker - which is covered by health insurers - was the most well-known, electrical pacing was now used for a range of conditions.
"It's not like this device is an unknown," he said.
However, this week a Bupa spokeswoman maintained the device was covered for some surgeries, but not others.
"Whilst privacy prevents us from talking about any member's particular circumstance, we can share that even though the neurostimulator is on the Department of Health's prostheses list for the treatment of other conditions, it is not on the list for the treatment of gastroparesis," the spokeswoman said.
"For safety reasons Bupa funds medical prostheses which are on the Department of Health prostheses list, and have therefore shown they comply with clinical safety standards, rather than experimental devices."
A spokeperson for the Department of Health confirmed the model of neurostimulator was on the prostheses list but in the urogenital category, meaning its use was limited to the management of faecal incontinence.
"Private health insurers may offer ex-gratia payments for the use of certain devices and technology for patients who have appropriate insurance cover, but there is no requirement for them to pay for experimental or unproven surgery," the spokesperson said.
"Individuals requiring this treatment option are encouraged to discuss what reimbursement options may be available with their insurer."
Mr Finlay is now calling on state and federal health ministers to "close the loopholes to stop insurers backing out of claims".
"We heard from a Melbourne mother recently whose 13-year-old son also has severe gastroparesis and will need this surgery, so we're campaigning not just for Kerryn but for the next people who will encounter this situation."