Organ donor system called ‘horrible’

Regina couple says online registry would boost provincial numbers

REGINA Brandy Hehn needs a kidney transplant and she’s considering moving out of province to better her chances of getting one.

Frustrated by low donor rates in Saskatchewan, Hehn and her husband Taylor Eichhorst are taking note of other provinces they believe are doing a better job of promoting and making organ donor registration easy.

“When I went to school in Winnipeg they had a cool system where you could literally sign up online and that wish of yours was saved digitally,” said Hehn.

Similar online registries are in place in other province, including Ontario, Alberta and B.C.

“Not only do we not have that, but we’re just given this piece of paper that you only get when your health card renewal goes out,” said Hehn. “You can request them, but half the people don’t keep them in their wallet and ... it can still be overridden by your family’s wishes.”

“It’s a horrible system,” she said. Earlier this week, Taylor took to the Reddit online community to share his frustrations.

He had just returned from a brief trip to B.C. where he learned through a radio ad that residents could simply register online.

“Why does it always seem like this province (is) so far behind in everything we do?” read the post.

The post also mentioned Hehn’s past experience on the transplant list. At age 17, Hehn was diagnosed with autoimmune hepatitis, a disease that attacks the liver.

At age 25, she had a liver transplant after living with liver failure for two years. It was that process that depleted her kidneys to 26 per cent of their normal function and Hehn was told she would eventually need a kidney transplant.

That was 10 years ago. Hehn has been undergoing dialysis three times a week for almost three years, and Eichhorst just wants to see his wife get a kidney and live a normal life.

“She’s too young to have to spend 12 hours per week getting her blood cleaned,” he wrote. “You wouldn’t know it if you saw her, but man it’s hard on her.”

His trip to B.C. was eye-opening, Eichhorst said in an interview Saturday.

“Talking to my relatives down there, sharing stories and whatnot, I found out it was a lot easier for people to become donors,” he said.

It’s always been the couple’s dream to move to B.C., but the plan has always been to do so after the transplant so she can be near her family in Regina.

“My parents are here, my whole support system outside of Taylor is all here so I’d be going out there and wouldn’t have my mom and my dad to help me along the way,” she said.

She said they are also not financially stable enough yet to move to B.C. where they would need to be close to the transplant centre in Vancouver.

“It’s just a nightmare to think about,” Hehn said.

Hehn and Eichhorst would like to see Saskatchewan institute an online organ donor registry to make it easier for people to sign up, with the hope it leads to increased organ donation rates.

Hehn would also like to see more campaigning done on popular social media platforms like Snapchat to engage a younger generation.

“In reality, a lot of millennials and younger kids, they are the ones that are wanting to help the world and change the world and they see it for the beautiful place that it is,” said Hehn.

“Those people are always online.”

An app developer and a graphic designer, Eichhorst and Hehn even mocked up an app to give easy access to organ donation information. Eichhorst said he sent emails to provincial officials about the idea, but never heard back.

“Obviously I’m quite aware (of the need for more organ donors) and usually as soon as I become aware of something in the world I see a lot more of it, but I never see or hear anything about organ donation,” Eichhorst said.

According to the Government of Saskatchewan website, there are typically 60 people waiting for a kidney in the province, but only enough donations for about 30 transplants each year.

For Hehn, whose previous transplant created antibodies that will result in her body rejecting 50 per cent of potential donors, increasing donor rates is even more important.

“The odds are just forever against you,” she said.

Hehn said she was told dialysis patients have a quality of life around four to 10 years.

“They say around year four is when you start to really not feel great and if you have been working up until that point, it’s likely that you will either have to cut back or quit completely.”

Currently working full time, but nearing that four-year mark, Hehn is hoping she will get the call soon. In the meantime, she tries to remain optimistic.

“I try not to dwell on it a lot,” said Hehn. “I do believe I’m on my path and it will all work out.”