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Awaiting kidney removal, Missy Deyo finds a cause — and hope — through hockey

Neate Sager
Buzzing The Net

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Deyo, 25, is having her right kidney removed in December (photo courtesy Missy Deyo)

Missy Deyo, who lives on the Internet, is also fighting to live a full life.

Now the way 25-year-old who is the social media co-ordinator for her hometown Kingston Frontenacs has combined those two themes of her life will likely extend untold lives throughout North America. Deyo is awaiting surgery on Dec. 14 to remove her right kidney — which was actually her better one — in hope of relieving lifelong health problems.

Despair would be the easy way out for someone who thrived on working "13-hour days" as a retail store manager before being waylaid by illness 23 months ago. Having more than 8,250 Twitter followers (@miss_deyo), Deyo realized she has a platform. On Wednesday, she launched the So, So Much Hope Campaign, intended to increase blood and organ donation in Canada and the United States. Her goal is to get 1,000 people people to become blood or organ donors by Christmas 2013. That might have be upped: in barely three days, 59 people registered with the Be A Donor Campaign. All told, thanks to Deyo's prompt, 115 people have at least made an appointment to give blood and/or explore being an organ donor.

It speaks to the fast-forming bonds that grow between people just through the love of hockey.

"I feel like the hockey community, so much, takes care of its own," Deyo says. "It's just crazy to see some of the people who have been tweeting me. You would think they wouldn't have time, I'm just a nobody. But they've been stepping up to make calls and get more media exposure for this. It's something that no one has to be taking the time to do, but it's like, 'oh, she works in hockey' or 'she likes sports too.' It's just that instant connection. It's a bond that cannot be broken. Everyone takes care of each other. It's just amazing to see."

Deyo, who confesses she "was always too shy" to ever play hockey, got her inroad into working into the sport entirely as an outsider, writing and Tweeting about the sport. That's come while she's been trying to keep her hopes up while her health has been failing. She endured a painful surgery in August that she thought would save her right kidney but it was unsuccessful. On the phone, though, she's very chipper, even on a day when she's been offline while feeling a bit sick.

"It's been quite a journey," she says. "This will be that 19th surgery that is coming up in December, since May 2011. That is a very short time. It's been very, very difficult. There's been a lot of heartache along the way. I've been trying to keep going and turn things around and be positive.

"I feel like this [the So, So Much Hope Campaign] has been in the making for a really long time. It's hard but at the same time but I'm still able to keep smiling and I've met so many people online."

'Use my talents'

This summer, the Frontenacs sought Deyo, who co-owns BabesDigBalls.com, for tips on how to improve their social media presence. That spun off into her working for the OHL team part-time, writing promotional material, updating their Facebook page and live-tweeting during home games from the team's social media lounge — while concealing a nephrostomy bag that drains urine from the body under a team jersey.

It's filled a void.

"I wasn't able to work for about nine months, which was incredibly frustrating," she says. "I lost my apartment, all my stuff is in storage, I had to move back in with my parents, I love my parents, but I'm also 25. Getting this job [with the Frontenacs] has been so positive because I feel I can be useful and use my talents and get out of the house."

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Missy Deyo swollen after surgery in August 2012 (photo courtesy Missy Deyo)

Deyo is not glossing over the effects of her illness, but it staying to stay upbeat. She has been sick throughout her life; she was 15 when the problems were traced to her kidneys. Her right kidney, the one being taken out, was actually the healthier of two prior to 2011.

"Before that it was all just my left kidney," she says. "So it's kind like this was my good kidney but my ureter, just from passing stones on the right side, managed to be really, really messed up. And then it was just beyond saving ... they can't fix it.

"It's crazy. Before this, I was a retail manager, I had been at the same store for three years. I was working 13 hours a day. I was a real workaholic and extremely social.

"Now it's very rare that I get out bed. I'm working now but I manage to do it a lot of from home. It's such a 180 from the person I used to be. It's hard because I'm a single, young woman and I'd like to be out and doing things."

The sports blogosphere — the site she co-owns grew from being started from scratch to having as many as 16 contributors — has been a solace. When she was cooped up 24/7 by kidney complications, one of Deyo's escapes was reruns of the 1980s sitcom The Golden Girls.

"That might sound funny but it reminds me of my grandmothers, how I would want to talk to them about this if they were there," she says.

It will not be known until after surgery whether Deyo will require a transplant, which is part of why she's shared her story with the media. She is very much in uncharted territory, but seems clear-eyed about what could happen after Dec. 14. On the phone, though, she was already scanning the OHL schedule, mentioning the Frontenacs have a big run of weekend homestands in the first six weeks of 2013.

"Once they take my kidney out, I'll either be doing really well with just one kidney or a lot of other complications could come up and I could need other surgery and go back to the hospital. It's possible I may not be home for Christmas, stuff like that, but we really won't know until it happens."

She's already started something larger than herself. Meantime, take it from Missy Deyo: being digitally dialed in can sustain someone in difficult times. It cannot fully fill in for the active life every organ recipient dreams of regaining.

"I've been a bit of a recluse, but I'm looking forward to rejoining the physical world," she says.

Neate Sager is a writer for Yahoo! Canada Sports. Contact him at neatesager@yahoo.ca and follow him on Twitter @neatebuzzthenet.

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