The Timaru Herald

Patient on mission to change organ donor rules

- Rachael Comer

While she waits for a kidney donation, Jody Devine spends more than 10 hours each night hooked up to a dialysis machine, but in no way does she want to be portrayed as a victim.

Instead, she hopes her petition calling for the establishm­ent of an organ donor register in New Zealand will effect change and create awareness of the country’s donor laws – which she says need to change.

In New Zealand, the Human Tissue Act (2008) requires consent before organs or tissue can be removed from a deceased person for transplant­ation.

In addition, donation should be discussed with all families irrespecti­ve of whether the word “donor” is entered on the person’s driver’s licence.

“I didn’t know this until I was diagnosed with kidney disease two years ago,” Devine said.

“I thought, we need to start a campaign to create awareness – what’s the point of having ‘donor’ on your driver’s licence if your family cannot respect your wishes anyway? It needs to change.”

Devine was diagnosed with IgA nephropath­y, also known as Berger disease, two years ago. It’s an autoimmune disease that causes inflammati­on of the kidneys, affecting the ability to filter waste, excess water and electrolyt­es from the blood.

At the time of her diagnosis, she was told she had the kidneys of a 90-year-old.

She had to spend close to five months away from home for treatment just after she was diagnosed, meaning she was also away from her two daughters, who were aged 6 and 8 at the time.

Devine has been on dialysis for 18 months and has no idea when she will receive a transplant – she has been on the waiting list since February last year.

“I believe the average wait is between three and five years.”

Health New Zealand Te Whatu Ora’s website confirmed the number of people on the active waitlist was usually more than 400.

But for now, while she waits, every evening about 9.30pm Devine plugs into the dialysis machine, unplugging about 8am the following morning.

“It depends if my machine goes off during the night or not as to how long I am on it for.”

She said it was a lot better than manual exchange dialysis, where she was hooked up to a machine up to four times

“If the deceased person has filled in a card or was put on a donor organ register, this can spare loved ones a lot of stress and ensure that the person’s own wishes are carried out.”

Jody Devine

a day for half an hour at a time. “I feel very privileged to get a machine. It gives me freedom.”

But she does miss time with her girls when she is on the machine, she said.

Devine felt that if an organ register were to be establishe­d, it would take away stress for families at an already unsettling time.

“Doctors ask the next of kin in the hospital about the presumed wishes of the deceased person and ask them to make a decision based on these. This sort of decision at a time of mourning can be an additional stress on relatives or be too much for them” she said.

“If the deceased person has filled in a card or was put on a donor organ register, this can spare loved ones a lot of stress and ensure that the person’s own wishes are carried out.”

She said more weight should be placed on the intentions of the deceased.

“Perhaps this could be done by strengthen­ing the opt-in process by either licence, passport or a register.”

She has distribute­d paper copies of her petition and has also created an online version.

Devine said she was “not a victim” and was not seeking attention for its own sake. Rather, she was motivated to make things better for her “two beautiful girls”.

 ?? JOHN BISSET/THE TIMARU HERALD ?? Jody Devine, of Temuka, is waiting on a kidney transplant and has launched a petition to change organ donor laws. She is pictured with her two daughters, Evelyn Hodson, 8, and Madeleine Hodson, 11.
JOHN BISSET/THE TIMARU HERALD Jody Devine, of Temuka, is waiting on a kidney transplant and has launched a petition to change organ donor laws. She is pictured with her two daughters, Evelyn Hodson, 8, and Madeleine Hodson, 11.

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