Renal nightmare

Thursday, 13 March 2008200803131203
Renal nightmare

Kidney failure has stunted Glen Soper's life. He tells health reporter JANINE RANKIN that more needs to be done to prevent and manage kidney problems early so people don't have to live as he does.

After four kidney transplants and nearly quarter of a century on dialysis, Glen Soper loathes needles and hospitals and can't stand pain.

Two things keep him going. One is the prospect of setting a new record as New Zealand's longest-surviving dialysis patient. The other is his mum, Fran Hunter, the woman who donated one of her own kidneys when he was a teenager. The transplant worked perfectly for three hours, then failed.

Growing up in Invercargill, Mr Soper has only hazy memories of being well as a child.

"I must have stopped peeing at some stage, and my mother could see me getting so sick I had trouble getting to school. The doctor didn't do anything until she slammed her fist on the table. Then they did every test known to man at Kew Hospital.

"Then there was one more test. They said there was only a one in 50,000 chance it would be positive, and they'd already had one that week."

But a positive result it was. The 12-year-old had reflux nephthropathy - a congenital fault that meant the duct between kidneys and bladder didn't close properly and urine could backwash, damaging the kidneys.

The damage was so bad by the time he was diagnosed he was a couple of weeks from death.

The bright boy who started his secondary education at 11 never got back to school in Invercargill. He and his mother moved to Christchurch, where he spent months in the hospital's renal unit.

At 13 he had his first transplant. His mum was the only family member who was a match. He still stumbles with emotion as he thinks back.

"Mothers say they would die for their children. Three or four hours after surgery she was there to see me - she didn't want me to know her pain."

But they shared the grief when the transplanted kidney stopped working after three hours, and Mr Soper was back on dialysis.

A second transplant, this time from a cadaver, was more successful.

"It worked like a charm. I knew what it was like to have a pee.

"People take it as a God-given right to be able to pee. They just don't get it, that you can't take it for granted."

Released from dialysis, Mr Soper started running, training, and going to the gym. He was full of energy. He even grew, at last.

It stayed that way for two years and 10 months.

"I suppose I started getting a bit slack. Like other teenagers, I thought I was bullet-proof. I took my tablets irregularly, and my body started rejecting the kidney. By the time we worked out what was happening, it was too late."

Since then, like 2000 other New Zealanders, he's been dependent on the machine to clean his blood.

There have been two further transplant attempts, which both failed, and various other surgeries.

He's ended up in intensive care, he nearly lost his leg through an arterial blockage, he's acquired infections and his heart has stopped on the operating table.

"I have actually died nine or 10 times. But something doesn't want me to go from life yet."

He says he's not going back on any transplant lists now. His best hope is that dialysis will keep him alive long enough for medical researchers to come up with a better option. He follows debates about cloning and stem-cell research as his life depends on it.

"I'm on this earth to be there when that happens.

"The problem is, the people who make decisions for sick people have not been sick a day in their lives.

Meantime, he manages as best he can. He does his own dialysis at home, usually at nights or in the evenings. He has to inject drugs sub-cutaneously into his abdomen to stimulate red blood cell production. He plays PlayStation games, "keeps his brain active" on the internet, he's done a few courses, and gets some casual work.

And he goes fishing.

His idea of a holiday is to go to Palmerston North Hospital's renal unit once a month so they can take blood tests while he's on dialysis - it's just one needle too many for him to handle.

* Thursday, March 13 is World Kidney Day. Palmerston North renal nurse Bobbie Kitchen will be visiting local pharmacies offering free blood pressure checks as a simple, easy screening test that suggests when kidneys might not be working properly.

PHOTO: JONATHAN CAMERON/Manawatu Standard

DON'T TAKE PEEING FOR GRANTED: Artery grafted on to vein creates Glen Soper's own-grown throbbing, buzzing fistula. It provides access for the needle and tube needed to pump his blood through a dialysis machine for up to seven hours, three times a week.