Updated: 07:55, Saturday April 14, 2012

Kidney waiting list guidelines need to be overhauled to address the low number of Australian patients signed up for transplants, experts say.

Australia bucks the trend of other western countries when it comes to the proportion of dialysis patients who are on a transplant waiting list.

Only 18 per cent of Australian dialysis patients aged under 65 are on a waiting list for a transplant, compared to 48 per cent in the United Kingdom, 49 per cent in France and 33 per cent in the United States.

Professor Bruce Pussell from Sydney's Prince of Wales Hospital says there is a very low proportion of Australian dialysis patients on the transplant waiting list across all age groups.

The number of people listed as waiting has also fallen over the past five years, despite the rising number of people on dialysis.

This is also despite the fact transplant recipients experience lower mortality rates compared to those left on dialysis, in every age group, he says.

Professor Pussell has authored a study, published in the April edition of the Internal Medicine Journal of the Royal Australasian College of Physicians, calling for a shift in the way patients are considered for the kidney transplant waiting list.

The study also shows a wide variation in the percentage of people on waiting lists in different states and territories.

Professor Pussell said an independent review is needed to find out why people aren't signing up for kidney transplants and why the figures vary so much across the country.

'Is it that the local kidney doctors are determining who should be on it and who shouldn't be on it and that determination varies from state to state according to their own judgments, rather than looking at the possibility that everyone can benefit from a transplant?' he said.

Of just over 10,000 Australians on dialysis as at December, 2009, only about 11 per cent were on the transplant waiting list.

Under current national transplant waiting list guidelines, a person must have an 80 per cent chance of surviving at least five years after a transplant to be considered.

But Professor Pussell said the guidelines are too vague.

'The reasons that are being applied at the moment are unknown and loose. It needs to be uniform across the country and there ought to be a review of those guidelines by an independent body and community involvement so that we all know exactly where we stand in terms of putting people on the waiting list,' he said.

'Surely as a nation we should have some common approach so we're treated fairly no matter where we live.'

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Garry is one of 10 people starting dialysis this week at the local Le Mars Area Dialysis Services (LADS) Center, recently opened for all patients.

The Le Mars man's first local dialysis appointment is today (Friday), and for the first time in his life, going to dialysis doesn't mean a half-hour car ride each way.

"Now I can walk there," he said.

Garry had to begin dialysis in August 2008 after his kidneys started failing.

Since then, his Monday and Friday afternoons have been claimed by dialysis, a necessity for life.

Now that he won't be driving to Sioux City for his appointments, Garry will have two extra hours of free time each week.

He's excited, too, because he'll be able to get his Monday and Friday dialysis appointments done in the morning instead of the afternoon.

The morning appointments in Sioux City were too early for him and Barbara to get to, he said. That meant every Monday and Friday was dominated by the several-hour appointment carved out of the afternoon.

"With this being so close, I'll start at 6 a.m.," Garry said of the local dialysis center. "If I get done in the morning, I'll have the afternoon to do my stuff."

He writes aviation history books and articles at his home, and this will give him two more afternoons a week to get more accomplished, he said.

"Maybe I could get something done on time," Garry said with a laugh.

The local dialysis center's opening will change his wife's life, too.

"I get to stay home," she said, smiling.

Barbara usually drove Garry to Sioux City every Monday and Friday in case he didn't feel well enough to drive after dialysis.

That meant the hour of driving, plus waiting during Garry's five-hour appointments.

"It's four hours on the dialysis machine, plus prep time and then one-half hour after it's over," Garry explained.

The change to local dialysis will mean 10 extra hours at home for Barbara each week.

"I'll have to remember what it was like before dialysis and remember what I did with all my time," Barbara said with a smile.

Before gas prices were as high as they are now, at times Barbara would drive Garry to his Sioux City appointment, then drive back to Le Mars to take care of things she needed to do at home.

"But when gas prices went so high, that just wasn't feasible," Barbara said. "I'd only do it if there was something important I had to do."

Now she plans to have time to catch up around the house, plant her flowers and maybe dive back into the volunteer work she did before Garry started dialysis.

"I'm just going to take it easy," she said.

Having Garry's dialysis in Le Mars also means she won't be spending as much in Sioux City -- often she'd fill the wait time with trips to different Sioux City stores.

After this change, she will be in Sioux City much less.

"Now I feel like I can do a lot more here," Barbara said. "It will give me the option to shop locally. It will be nice to go to our local shops."

The Papes have learned to live -- and even travel -- with dialysis.

Now, if they want to go on a trip or visit family in another state, they simply arrange to have Garry's dialysis at centers along their travel route or in their destination town.

"That really freed us up," Garry said.

And that means people traveling to Le Mars will have that option at the LADS center, too.

For the Papes, having the option of local dialysis also means they won't have to dread winter as much.

Dialysis appointments are crucial for patients' lives. They are never supposed to skip an appointment, even if it's a blizzard.

"That was the worst part -- having to get there in a particularly bad storm," Barbara said. "We've done some sliding. Over the last three winters, we had some really bad drives."

Garry and Barbara's daughter, Christine Osterbuhr, of Le Mars, said having a local dialysis center will be "a big stress relief."

"The biggest thing is not having to worry about all those long, winter drives," Osterbuhr said.

She remembers stories her mom told of spinning 360 degrees on icy roads, and even one time having to stop for several hours at a friend's house halfway to Sioux City so they could wait out the worst of the weather.

"Regardless of ice or snow, they couldn't miss it. It's his life; he has to go," Osterbuhr said. "This way, it's just a few blocks away."

Osterbuhr thinks the opening of the local LADS Center is positive for her family and the community.

With gas prices high, traveling to dialysis appointments had become quite an expense for her parents, she said.

Now more of those dollars will stay in Le Mars, and not just from her parents.

"It'll mean income coming into our local community," Osterbuhr said.

In the long run, Garry's family is hopeful for a life-transforming kidney transplant.

"He's on the list," Osterbuhr said. "And my son is starting the process to see if he can donate."

In the meantime, though, they are grateful Garry and Barbara will get to stay close to home for dialysis.

"This way it's just a few blocks away," Osterbuhr said.

At the corner of Central Avenue and First Street Southwest, the LADS Center is now humming with life, serving patients in a morning and afternoon shift Monday, Wednesday and Friday, according to Mike Donlin, LADS board member.

"There was no reason to delay," Donlin said.

After much waiting, the Iowa Department of Inspections and Appeals (DIA) completed a three-day re-inspection in late March and it was successful, Donlin said.

"The inspection report had zero deficiencies," Donlin said.

An initial inspection last fall identified 22 deficiencies at the facility. They have since been corrected.

Donlin said LADS officials are already planning to add a nurse to the dialysis center's staff, which currently includes the manager and one nurse.

The estimated pool of dialysis patients has run from 14-28 people, Donlin said.

That list is in a constant flux -- there are patients whose kidneys are nearing the point at which they'll need dialysis, but there are also about half a dozen patients that have died since last fall, he explained.

As patients begin dialysis at the center, LADS leaders are starting to watch the financial side come to life.

"We'll have to see how the numbers look in the first quarter," Donlin said. "Sometime this summer we'll be able to see what the financial picture is going to look like."

The center's business plan is good, and it showed a break-even point under 20 patients, he noted.

For now, 10 patients is a good start, Donlin said.

"Do I want the 10 to be about the halfway point of its growth? Yes," he said. "When I stopped in to touch base last Wednesday and I saw five people in those chairs in the morning with others coming in the afternoon, it was a good sight."

And patients and families, like Garry and Barbara Pape, are saying they are pleased with the convenience, safety and personal time the local dialysis center will add to their lives.

"It's just a wonderful thing," Barbara said.

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