‘No hope anymore’: Regina woman waiting for medical specialist considers MAID

While Jolene Van Alstine looked on, wearing a wan expression, her partner Miles Sundeen talked about her years-long battle with illness.

About six years ago, Van Alstine began getting nauseated; at first it was for just part of the day, then it became all the time. She was diagnosed with parathyroid hyperplasia, a condition that gave her nausea and frequent vomiting, abdominal pain and frequent bone fractures.

She tried to see doctors and specialists for years, but it wasn’t until 2020 when she was admitted to hospital that she saw an endocrinologist who explained to her the surgery she needed. It took 13 months of Sundeen advocating, but she was finally able to get the surgery, removing at least two of four of her parathyroid glands.

“It was miraculous. The doctor had said that she would feel better the next day and, absolutely. The day after the surgery, large incision in the neck — sore, granted — but her nausea, vomiting, bone pain, nerve pain and her unregulated body temperature absolutely went away just like that,” explained Sundeen.

However, the relief was short-lived. Within about 10 days, the symptoms had started to come back. Since then, the couple has been trying to get in to see an endocrinologist again and she can have another surgery.

Van Alstine has been waiting a year, but Sundeen said they could still have another two years to wait to see the specialist. In the meantime, the condition has eroded the couple’s quality of life.

Speaking shortly, Van Alstine said it’s taken years of life away from her.

“It’s horrific. It’s not a life anymore. It’s brutal,” said Sundeen.

He said she rarely leaves the house.

“(We’ve taken) a couple of Sunday drives in the country just to get her out of the house. She has been not out of the house more than 20 to 25 times in four years. She’s essentially stayed in the house because she’s too ill to go anywhere,” said Sundeen.

He said the house has to be kept at 13 C due to Van Alstine’s inability to regulate her body temperature. She’s in bed early before he gets home from work, because she’s up early vomiting, and he’ll wake up with her just so he can spend some time with her.

They tried to get into a surgical clinic in Florida but were told they’d need a recommendation for surgery from an endocrinologist. They’ve looked into going to another province but were told the wait lists there were about the same.

Things have got so bad for her that Van Alstine has released her medical records and put in an application for medical assistance in dying.

“She’s made that decision to go forward in that direction because she just has no hope anymore,” said Sundeen.

“We’ve done our time with six years. It’s just to a point where I’m afraid, driving home from Moose Jaw after work, that she won’t be there when I get there because the hopelessness has taken over her life.”

Sundeen said something needs to be done quickly to fix the wait lists and lack of specialists in the province. He said he’s speaking out not just for his partner, but for the others in the province who are also waiting.

“(It’s for) myself and other people who pay taxes, lived here all our lives, and the expectation there would be a reasonable amount of health care provided to us when we need it,” he said.

Van Alstine and Sundeen were invited to the Legislative Building by the Saskatchewan NDP.

NDP Health Critic Vicki Mowat said Van Alstine has been failed by the province’s system.

“People like Jolene cannot afford to keep paying for the mismanagement and mistakes of this Sask. Party government,” said Mowat.

She’s calling on the provincial government to get specialist wait times under control. Mowat wants more incentives to attract specialists to the province and better working conditions to keep the ones already here.

“We want this government to better fund and incentivize much-needed medical specialists to shorten the wait list for a diagnosis that is holding many people back from getting the procedures that they desperately need,” she explained.

Van Alstine’s case was brought up in the Legislature during Question Period.

Rural and Remote Health Minister Everett Hindley said he’s very concerned about her case and offered to meet with her after proceedings.

Hindley said his government has been working hard on the health-care issues but he admits attracting specialists is difficult, claiming it’s a problem for provinces across the country.

“It’s something that we do need to address and we’re trying to pull out all the stop when it comes to this,” explained Hindley.

He said he appreciates this kind of problem is urgent for people.

“Whether it’s a case like Jolene’s or perhaps someone who might be waiting for a hip or a knee surgery or any number of medical procedures, every day that goes by is significant,” he said.

The minister said government is putting more resources than ever before into these problems when it comes to time, effort and money.