Kidney disease steals freedom

Rebekah Jones, from Napier, with her home dialysis machine. Photo / Paul Taylor

Two Hawke's Bay women are determined not to let their kidney diseases define them.

Home dialysis patient Rebekah Jones was diagnosed with a genetic blood condition, atypical hemolytic uremic syndrome, at just four months old. She began a life of frequent hospital stays, dialysis treatment and daily doses of drugs.

Her older sister had the same condition and lost her battle at nine months old.

"It turns the blood cells into shrapnel, essentially, which is what destroyed my original kidneys," Ms Jones said.

In her late teens, she had a kidney transplant, which opened up the world to her. She became an outdoor education instructor.

"I had seven really good years, which was fabulous."

However, two years ago her blood condition came back and she almost died. "Now I'm back to a life of dialysis."

The 27-year-old is a home haemodialysis patient and her future, in her own words, is "shaky". She is unlikely to qualify for another transplant because her blood condition would probably kill the kidney. However, she remained upbeat.

Lisa Tuhi, of Flaxmere, had no idea her six cups of coffee an hour were slowly killing her kidneys. She now has three five-hour dialysis sessions a week and has been coming to the hospital for more than four years.

"It takes away your freedom, that's the hardest part," she said.

The 48-year-old had a poor diet and, while not diabetic she is hypertensive. She has had kidney problems since 2003 and still has to lose 20kg to get on the transplant waiting list.

She has given up bread, butter, sugar and salt. "I do feel better."

She is trying to channel her prognosis into prevention. "I get the young ones in here, they need to see what happens."

She has seen numerous positive changes in her whanau. Family gatherings had always been an opportunity for a "feast".

"We used to have 12 puddings and two salad options, now we have two puddings and 12 different salads to choose from."

She said the kids also had weigh-ins and had personalised fitness programmes.

Today is World Kidney Day, a global awareness campaign aimed at raising awareness of the importance of kidneys.

Of the approximately 15,000 Hawke's Bay people affected by kidney disease many don't know they have an underlying health complaint, Hawke's Bay Hospital clinical lead for renal services Colin Hutchison said.

"The Government has funded projects aiming to increase the number of kidney donors in New Zealand and this is very exciting because we know that when people receive a kidney transplant from a loved one or friend they typically have a far longer and better quality of life than if they were to remain on dialysis," he said.

Kidney facts:

* The number of patients receiving dialysis: 2678.

* The cost to the health system of dialysis for an individual ranges from $30,000 to $60,000 a year.

* The number of people with a functioning kidney transplant: 1628.

* It's estimated that 1 in 10 New Zealanders have early stage kidney disease.

* Kidney Health Helpline: 0800 KIDNEYS