(ABC News: Nancy Notzon) ABC Newcastle
April 23, 2018 07:04:01
Maree Jaloussis has been on dialysis for 12 months after 10 years of chronic kidney disease.
(ABC News: Nancy Notzon)
Breaks away impossibleTravel or holidays to help manage stress or just to have a break are out of reach for many dialysis patients and their families. The whizz and whir of the dialysis machine went on and on, its invasive tubes pierced into Maree Jaloussis’s arm pumped blood back and forth. “It’s hard to go a lot of places and it’s hard to go away for a weekend because you can’t go away for longer than two days. “I had a big birthday coming up this year and so I thought I’m going to go visit the Big Red Kidney Bus at Nelson Bay and do dialysis there!”
The mobile unit means dialysis patients can go away for holidays to places such as Nelson Bay while the vehicle is stationed there. (ABC Newcastle: Robert Virtue)
The vehicle, an idea sparked by a kidney patient in Victoria, where the only other Big Red Kidney Bus is located, is a mobile service which gives dialysis patients a rare opportunity to have a break away.”The bus is in a holiday location and they don’t have to travel an hour or two back and forth from hospital for dialysis,” said Ling Wei, the nurse unit manager of the Big Red Kidney Bus in NSW.”You have the [one-way] windows, you can look out and see the world going by instead of the grey wall in the hospital.”The bus has given them confidence that they can get away and you’re getting the same treatment as from the hospital.”
Nurse Ling Wei says she hopes with more support they will be able to get a bus for each state and territory. (ABC News: Nancy Notzon )
“This year when I got the newsletter [from Kidney Health Australia], it tells you where the Big Red Kidney Bus is going to be,” she said. Photo:
Dialysis treatment days can be long for patients. You have to come back and be connected to your machine,” Mrs Jaloussis said.”Usually you wouldn’t go away unless you could book into a hospital and they’re usually full with their own patients.” But for once, Ms Jaloussis was not receiving treatment at her home north of Sydney or local hospital.She was in the middle of the Halifax Holiday Park in the tourist town of Nelson Bay, NSW. The organisation said 90 per cent of kidney function could be lost without symptoms, while only 10 per cent of people with chronic kidney disease were actually aware they had it.The most common causes of kidney disease which requires dialysis or a transplant are diabetes, inflammation of the kidney, and high blood pressure.The bus will be at the Halifax Holiday Park until June 9 before it heads to Port Macquarie. “Most people, like myself, have to do between 15 and 20 hours a week of dialysis,” Ms Jaloussis said.”Kidneys are filtering blood 24/7 for most people, but for us, our kidneys have failed so that 15 to 20 hours is the only filtration of all the toxins, clearing all the toxins out of our blood system.”A dialysis patient is not only strapped to the life-saving machine for long, uncomfortable periods of time, they are also often strapped to their homes or treatment areas.They might make it two days without treatment, but the requisite to filter blood bears down upon them constantly. Photo:
The Big Red Kidney Bus travels to holiday destinations in NSW to give dialysis patients the opportunity to have a break away. (ABC News: Nancy Notzon )
Ms Jaloussis said the centre was a blessing.”It’s fantastic for all the dialysis patients who really are restricted in a lot of ways in their lives.”Many unaware they have kidney disease
Push for ‘opt-out’ organ donation Teenager Louie Hehir once missed out on simple things like sleepovers and swimming because he was on dialysis. A third of Australians are at increased risk of developing kidney disease, with 53 Australians dying from kidney-related disease each day, according to Kidney Health Australia. Now he is lobbying for organ donation changes.
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