Saskatchewan couple on the impossible choice between unbearable suffering and death

For nearly a decade, Jolene Van Alstine has been on an exhausting journey through Saskatchewan’s health-care system, in search of treatment for a rare and debilitating parathyroid disease.

What began as a search for a diagnosis, turned into a years-long wait to see an endocrinologist and an ongoing struggle to get the surgery she needs to treat her condition. After enduring years of extreme pain and nausea, and unable to get treatment, Van Alstine decided to apply for a medically assisted death.

Her story spread across social media after she appeared in the legislature to implore the government to help her get access to the surgery she needs, or else she would choose a medically assisted death.

It was Van Alstine’s understanding at the time that she had been approved for a Jan. 7 MAID appointment after a doctor assessed her. However, she learned late this week that a second doctor must sign off on any requests. The earliest she anticipates getting a MAID appointment at this point would be March, her husband, Miles Sundeen told National Post.

The couple is now hopeful Van Alstine won’t have to go through with her plan to die, as U.S. conservative commentator Glenn Beck has offered to pay for her to get surgery in the U.S. Sundeen and his wife have been in touch with Beck, who is looking for a surgeon willing to do the complex operation Van Alstine needs.

Saskatchewan’s health minister is also now helping Van Alstine find treatment in Canada.

National Post spoke with Miles Sundeen about Van Alstine’s condition and the fight to get her treatment. This conversation has been edited and condensed for clarity and length.

How would you describe Jolene’s medical journey over the past 10 years?

It’s very difficult just getting in to get a diagnosis, and then the wait times for specialists, especially in Saskatchewan, to see an endocrinologist, was extensive. After seeing an endocrinologist, to get a referral to a surgeon to remove parathyroid glands, was a long wait. It’s a long wait for surgery. She’s had three surgeries now over the last four or five years, but it’s taken a great deal of time to work through the process every time.

How optimistic are you right now?

Well, we did go before the legislature here in Saskatchewan with the NDP a couple weeks ago, and we did have a meeting with Jeremy Cockrell, the health minister. He committed to helping us find help outside of the province of Saskatchewan. There are no endocrinologists in Saskatchewan taking new patients, and there’s not surgeons able to do the surgery, especially with Jolene’s complex case, but he’s committed to try and help us now. The plan that was devised with him was to get a referral from our family doctor to three clinics across Canada. One is in Hamilton, Ont. at McMaster, one at the University of Toronto, and one in Edmonton. So, the referrals have been sent to endocrinologists and the clinics that they work at. We haven’t had any response as of yet, so we’re hoping that that would be a good thing. But in the meantime, this gentleman in the U.S., Glenn Beck, has put it on his site, and apparently he got like a million hits about Jolene’s story, and he’s offered to pay for treatment and surgery, or whatever it is, in the USA.

How would you describe Health Minister Jeremy Corkrill’s attitude and sympathy towards the situation?

In the meeting, he was kind of neutral. We didn’t really touch base on that. We didn’t confront him in that situation. Seems a little bit apathetic, but he did commit to trying to help us. So that’s all I was really looking for. Unfortunately, it was verbal. There was nothing in writing. But for his commitment, I am hoping that I can take his word for it.

How did you find out that Beck wanted to help you and what steps have been taken?

I’ve been talking to one of his producers. Jolene says that she reached out to Beck because somebody told her that she was trending on Twitter, so she reached out to him and confirmed that he was for real. Because, quite honestly, neither of us had heard of him, but his assistants and I have been in communication over the last two days both on phone and by texting. Apparently, there were two surgeons in the U.S. that were interested in helping. One of the surgeons did call from Atlanta, and I talked to him today (Dec. 10). I gave him a synopsis of Jolene’s case, and it’s complex, and he felt it perhaps was a little bit beyond his pay grade, but that’s a nice thing to say. We had previously, three or four years ago, been in touch with the Norman Parathyroid clinic in Tampa Bay, Florida, and he is working on sending a referral to them for us. Apparently, they are the ultimate parathyroid institution in the United States, especially for complex cases. So that is good news. We are optimistic about that, that this might pan out to be something that will give Jolene some help, treatment and surgery.

How would you describe the support you’ve received from friends and family?

There are some friends and family that have tried to be supportive, but when you’re ill and not leaving the house, like not leaving the house for about eight years with no social interaction, only leaving the house for hospital visits, doctor appointments and lab work. People give up on you and write you off and just don’t think about you anymore. Social interactions are important to keeping relationships alive. So it’s been very tough. She has been very lonely, depressed, anxious about being just basically a social outcast, a hermit in her own home.

What are the symptoms of this condition?

One of the worst symptoms is nausea and vomiting. She is usually up at 4:30 in the morning. She goes to bed at 6 p.m. the night before, and she is so nauseated that she vomits for possibly two to four hours before it settles. She can’t take any of her nausea medications because they’re oral until she can control the vomiting enough in order to even take them to try and assist in controlling the vomiting. The other thing is, her body overheats. Her extremities get red, her hands, her feet and her face and her whole body just feels like it’s burning, and she’s spent two and a half years of her laying on the bathroom floor at night with the cold water running in the shower, day and night sometimes, and our temperature in our house, we spent two and a half years with it at 13 to 13.5 degrees Celsius, and that might be a nice spring day, but it’s not comfortable in the house when it’s minus 20 to 30 degrees. She has osteoporosis, very badly, because this disease leaches calcium out of her bones. She had four or five bone breaks, in four year, breaks where a normal person would have fallen or hit the joint or the bone and would have just ended up with a bruise. She apparently has had bone density tests, and she has the bones of an 80-year-old woman because of this disease. The longer it goes on, the worse it gets. So delaying treatment and surgery is very important, very important. So those are some of the symptoms. There are a couple others that are bad, but those are really horrendous, the bone pain as well, because, as the calcium leaks, it causes almost like a nerve bone pain. She’s on very strong medications of hydromorphone daily to try and control it.

How would you describe the support that people have given you since your story became public?

Honestly, to me, it’s very surprising, and I don’t even know how this particular thing came about. I know that the NDP, a couple weeks ago, said they were going to post the article on social media there, and I’m assuming that Glenn Beck and his staff saw this and decided to take up the cause.

To conclude, anything else that you think should be mentioned?

I’ll tell you one very important thing, and that’s this, is that because of the time lag to get treatment, Jolene has spent very close to eight years laying on a couch because she’s too ill. I mean, she can excuse me, she can get up and use the facilities herself, but she has home care and kind of looks after bathing and stuff.  I try to help, but she has no other capabilities, as far as leaving the house, cleaning, cooking, looking after herself, basically, in any way, shape or form. What this has done in the meantime, because of being so sedentary and being so nauseated every day, she gets sick all the time. She gets pneumonia. She’s developed a condition called diverticulitis, which is caused by a very sedentary lifestyle, at least one of the major causes, and that is a condition in the bowels, where, in the meantime, she’s had to have her sigmoid colon resected because of infection. She keeps getting infections in the bowels. This is something she does even when the parathyroid is looked after. This is a condition we have to fight and will have to live with the rest of her life as well. It’s a direct result of the parathyroid not being looked after in an expeditious manner and that’s very important, and that’s a very sad situation as well.

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