The toll of living for years in a motel to get dialysis

Finding that your kidneys are failing and that you need dialysis is confronting enough, but for John Jensen his burden was added to by having to live in a motel for two and a half years to receive treatment.

John, who was an advanced care paramedic during his working life, began to realise something was wrong, his wife Shirley Jensen told RNZ’s Nine to Noon.

“He was overweight, which he also knew, but he knew his kidneys were failing. And he was really good at going back and getting tested all the time. He was very regular with the doctor visits and everything, and just gradually watched as his kidneys failed more and more.”

The toll of living for years in a motel to be able

Nine To Noon

Last month, a report from the Australian and New Zealand Dialysis and Transplant Registry showed that on average all renal services in New Zealand are operating above capacity.

When it got to the point where dialysis was the only option for John, the lack of treatment options in the South Island had a terrible impact on John and Shirley’s lives.

There was no dialysis available at the nearest hospital to them in Timaru, she says.

“So, the only thing we dealt with at Timaru really was when the specialist came down and he would go to that clinic and we'd have a discussion about where to go from here as his kidneys failed more and more.

“And then the final visit was when he was told this is it, there's no turning back now, it's inevitable, you're going to have to go on hemodialysis. And that will be in Christchurch.”

Plumbing in a dialysis unit at their home wasn’t an option, she says.

“Because of the way our plumbing is in our home in Waimate, it's all on one side of the house and it was on the wrong side of the house for a room that was suitable to put the machine in, which meant they would have had to dig up the width of our property with drainage and pipes and putting it all in. And it just wasn'tSend viable at all. It wasn't going to work.”

For a while John treated himself with peritoneal dialysis, a home-based treatment for kidney failure. But the treatment was invasive and patients are prone to infection, she says.

That meant John often ended up back at Christchurch, she says, with the hospital saying he would have to stay and have treatment there – the prospect was “terrifying” for John, she says.

“It meant that he couldn't live at home properly anymore. We were going to be basically forced to be separated because we couldn't just shut the house up and move to Christchurch.”

That wasn’t a viable economic option.

“Property values are so different between the two places. We would never have been able to buy a house without a massive mortgage. We wouldn't have been able to rent for the same reason.”

So, John stayed in Christchurch and Shirley commuted backwards and forth from Waimate to visit him. It took a huge toll on them both, she says.

“He'd have panic attacks towards the end and ring me at home. In the middle of the night, I'd calm him down and then I'd go up the next day and settle him down again. He was frightened, but there was no support there for that. It was awful.”

John was “frustrated and scared”, she says being put up in a motel, worried about things going wrong.

“I mean, if anything happened, he was very capable. He would ring and check in with dialysis and say, this is what's happened. But often things happened in the middle of the night.

“So it was like a trip to Christchurch Hospital and he'd go into A&E and then they would keep him there for ages and then admit him into the dialysis …he felt safe when he was there, but he didn't feel safe on his own in that motel unit.”

John died in April last year. He never got his wish to die at home.

“That was made very clear the whole way through that no matter what, he wanted to come home. And that didn't happen in the end.”

Apart from the emotional toll the arrangement put on the couple the costs make no sense to her, she says.

"That's the thing that's made me angry more than anything is that I'm not stupid and my calculations are completely different to the government calculations at the moment. I don't see how it's efficient, cost efficient, to keep people in a motel paying for their transport to get to their treatment.”

Investment in dialysis care at Timaru would take strain off Christchurch, she says.

“There are rooms available in Timaru. It just doesn't make sense to me that they can't retrain some girls, some of the nurses, to do a dialysis unit in Timaru Hospital and take that pressure off Christchurch.”

In a statement, Health New Zealand told RNZ it was very aware the current availability of dialysis services was not meeting the access needs, with demand for dialysis growing 4 percent each year.

It said the Renal National Clinical Network was developing a nationwide renal dialysis plan to help address the current capacity gap.

In the short term the solution will be more shifts to ensure the need is continues to be met.

Health NZ was asked separately about the cost of putting dialysis patients up in motels, but it says it doesn't break down transport and accommodation support costs.

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