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CanadaWhiteway woman's mysterious illness baffling doctors, frustrating family

18:28  14 august  2019
18:28  14 august  2019 Source:   cbc.ca

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A Newfoundland woman with a mysterious illness is living out a real-life version of a television medical drama — except she doesn't know if a doctor will have a flash of inspiration and diagnose her in the nick of time.

Suzanne Whalen, 45, of Whiteway, N.L., has a complicated condition physicians can't crack.

Her symptoms don't line up. According to her family, all of the different tests she's had come back clean. But she has what looks like severe allergic reactions, and doctors can't figure out what's triggering them.

"This summer has been worse than last summer. This week is worse than last week," Suzanne's husband, Craig Whalen, told CBC on Tuesday.

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"It's actually wearing her down. Doctors tell her that the more her body is fighting this reaction the more tired it gets … and the more this reaction builds."

The reactions have been happening for more than a year now. Before that, she was completely healthy.

The family traces it back to wisdom tooth surgery in 2017; that's when they say things started going downhill. But no one really knows if the surgery has anything to do with what's happening now.

'She's afraid'

Suzanne is in limbo at St. Clare's Mercy Hospital in St. John's. Her husband says she's on about 160 pills a week to try to keep flare-ups under control but they still come out of nowhere.

At one point, she required the equivalent of 16 EpiPens in three days, according to her family, who say doctors aren't trying anything new anymore but are just trying to keep her stable.

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Doctors said out of the hundreds of tests, Turner only came back positive for one – Factor V Leiden. Her husband echoed those sentiments on Tuesday. “Please everyone know how thankful she and John Preston and I and everyone in the family are for the overwhelming outpouring of love and support.

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Whiteway woman's mysterious illness baffling doctors, frustrating family© Submitted by Craig Whalen Suzanne Whalen, left, with her husband, Craig, and daughter, has been having what look like severe allergic reactions, but doctors can't figure out what's causing them.

"They're afraid they might disturb something in her that might cause her to react and have something to the point where they're basically going to lose her," said Craig Whalen.

He said doctors have told the family that if anyone can figure it out, it's an immunologist at St. Michael's Hospital in Toronto.

The Whalens have an appointment scheduled with him on Aug 30, and they say a medevac has already been approved to bring them there because Suzanne is too volatile to fly commercially.

The problem

But the immunologist the family feels is their best shot doesn't have admitting privileges.

According to the family, the medevac won't fly if it a patient doesn't have someone to sign them into hospital when they land, and St. Michael's hasn't found another doctor to admit Suzanne on behalf of her immunologist.

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"My wife is a very strong person," said Craig, who's speaking on behalf of his wife because he says she's too sick to be interviewed.

Whiteway woman's mysterious illness baffling doctors, frustrating family© Submitted by Craig Whalen This is what Suzanne Whalen looks like after more than a year of reactions.

"For the first time now, especially in the last couple of months, she's actually frightened. She's afraid. She's afraid something is going to happen to her and the medications aren't going to work."

St. Michael's Hospital didn't respond to CBC's questions about its admittance protocol.

Eastern Health said it couldn't speak to specific cases but gave a general statement about patient transfers.

"In any case where there are complicating factors in making the necessary arrangements for a patient to transfer from one facility to another to receive the care they require, our staff work one-on-one with the patient, their care team, and family to ensure a transfer is made in a timely manner to maintain appropriate continuation of care."

'End of our rope'

Craig Whalen said more communication is needed to get his wife healthy again. He said until Tuesday, the family wasn't being told much.

Now he's in touch with an Eastern Health official and feels the case is being looked at.

"I'm not saying the health-care system here has failed us … I just think we've ran the end of our rope here and the doctors have ran what they can do. They've told us that already," he said.

"Toronto is the place that she needs to be and the doctor in Toronto is the man she needs to see."

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