Battling kidney failure at 29, actress Johanna McGinley finds new identity as a documentarian

This past March was a memorable month for 29-year-old actress Johanna McGinley. She had a recurring role on WGN America's TV show “Outsiders,” which was airing new episodes. She was also working behind-the-scenes on two movies filming in Cleveland: “Acts of Violence,” starring Bruce Willis, and “White Boy Rick,” featuring Matthew McConaughey. And, on March 29, she filmed a starring role in the video for Columbus band Starset's song “Telepathic.”

The rigorous schedule was normal for McGinley, who has been working in the local film industry since 2013. “I'm a busy bee,” said the energetic actress in a mid-July interview on the back porch of her mother's home in Westerville. “I love to run around … and have structure and control over my life.”

McGinley was also used to being sick. She was slightly anemic, endured headaches and, for the last five years, frequent vomiting. “The last year it's been three times a week,” she said. “I'm used to puking and getting on with my day.”

But the bruises that suddenly appeared all over her thighs about a week before the Starset video shoot were new. As they intensified, McGinley grew concerned and was instructed by an on-set medic to see a doctor. On March 30, she and her mother went to an urgent-care facility and were directed to go to the hospital immediately. They arrived at Mount Carmel St. Ann's, where McGinley's systolic blood pressure measured at about 200. (A medical emergency occurs when systolic blood pressure climbs higher than 180.)

McGinley was immediately admitted to the ICU. She was diagnosed with end stage renal disease (ESRD), or kidney failure, that night, and began dialysis, a blood-cleaning treatment, the next day.

“I was kind of shocked,” McGinley said. “I was like, ‘Dialysis? Isn't that for old people?'”

Dialysis patients are often older, especially given that people with diabetes and hypertension are at a high risk for kidney failure. But McGinley developed the disease due to the size of her organs.

“My kidneys are abnormally small,” she said. “So they just never grew up and they can't process my body weight.”

McGinley was released from the hospital after nine days. About two months later, in June, she began filming a documentary, ?In a Dialysis Daize,” capturing her experience from her diagnosis through her kidney transplant, which she is still waiting to receive. The idea to film the documentary was born in the hospital, but, as she battled depression and uncertainty, she was hesitant to move forward.

“I started thinking, ‘Well, I'm Johanna the actress. I'm Johanna the filmmaker,'” McGinley said. “‘I'm not Johanna the dialysis patient.' I wasn't really sure I wanted to be that. I wasn't sure that I wanted to be known as the kidney girl.”

Acting has been a part of McGinley's identity since her childhood in Wilton, Connecticut.

“I've always had the dream of [being] an actor,” said McGinley, who was enamored with the show “I Love Lucy.” “I remember impersonating [Lucy] and Ricky Ricardo for my mom. I think Lucy was my inspiration.”

“[Johanna] always had an interest in expressing herself and acting from the get-go,” said McGinley's mother, Sherry Romohr, who moved the family to Columbus after her divorce from McGinley's father. Romohr paid for McGinley to work with talent agencies like the Modeling Association of America International (MAAI). When McGinley was 16 years old, she participated in a MAAI showcase in New York and won a scholarship to the New York Conservatory for Dramatic Arts, where she studied two years later.

“I watched her do that audition in front of all these strange people at the Waldorf [Astoria] and I went, ‘She's got whatever it is that it takes to do that,'” Romohr said. “‘She has “it.”'”

McGinley graduated from the school and returned to Columbus after her New York apartment was burglarized (everything was stolen but her bed and her cat, Bowser). She experienced a period of depression due to the lack of acting opportunities. But Romohr encouraged McGinley to keep pursuing her dream.

“I said, ‘Johanna, I will do anything I can to help you,'” Romohr said. “So many people go through their lives not being able to express their passion. … There wasn't anything that I was not going to do to encourage her.”

That meant watching McGinley's dogs or lending her car to her daughter to go to auditions for productions that started coming to the Midwest. Since 2013, McGinley has been cast as an extra in “Captain America: The Winter Soldier,” which filmed in Cleveland; in a supporting role in “The Shoes,” which filmed in Dayton; and as a waitress in “Dog Eat Dog,” which also filmed in Cleveland, to name just a few examples.

But she has also gained extensive experience in less glamorous areas behind the camera, including production, casting and craft services.

“A lot of actors don't do that sort of thing,” said McGinley, who once worked as a production assistant on the “Dance Moms” reality show and drove the Candy Apple's Dance Center students from Canton to a competition in New York. “I'll take any job. I just want to learn and be on set and network and meet people.”

“I slept in my car a lot because I would do jobs that are so low on the chain that they wouldn't put me in a hotel,” McGinley continued. “But I wanted to work.”

“[Johanna's] a go-getter,” said Nathan Bielski, a partner at local production company Elevate Pictures, which is executive-producing “In a Dialysis Daize.” Bielski has worked with McGinley in the past, hiring her for jobs like second assistant director on “Welcome to Grandville,” a pilot series that filmed in Granville.

“She just has been around so much that her knowledge base is well beyond what people see her as,” he said. “She's so much more than a PA [production assistant]. She could be a producer. She could be a director. She could be anything she wants to be because of her skillset.”

“She networks like nobody I've ever seen,” said Tisha Hanley, a friend and fellow actress who met McGinley on the set of an independent film. “She is a wizard with social media. … She's built this reputation as such a hard worker in the film community.”

“And if she knows that there's a project coming up, she's always kind enough to share that information for people that may want to get in on it,” Hanley added.

Of course, McGinley's big break was getting hired as regular cast member Annalivia Farrell on the Pittsburgh-based TV show “Outsiders,” though she didn't have lines (her character had taken a vow of silence). The show ran for two seasons before being canceled when new management took over the WGN America network.

“It was a great experience,” McGinley said. “We had a huge fan base. It was just about politics and money and the direction [of the network], and no one picked [the show] up.”

To make matters worse, McGinley learned of the cancelation after her ESRD diagnosis. “It was just like one thing after another,” she said.

“I felt incredible sadness for Johanna,” Romohr said, referring to her daughter's condition. “She's worked so hard and it was just all snatched away — or it seemed to be.”

McGinley's gift for acting was evident as she described her hospital stay with animated facial expressions, dramatic gestures, impressions and a touch of humor. For example, one time, experiencing something like diabetic shock, she was instructed to chug juice, which reminded her of Julia Roberts' diabetic character in the movie “Steel Magnolias.” “That's all I could think when I was doing this,” she recalled. “I was like, ‘Oh my God, I'm Julia Roberts!'”

There was also a time when, having a bad day, she used profanity and a nurse not assigned to her asked her to watch her language given they were “in a hospital.”

“I was like, ‘Whoa. You don't think I know we're in a hospital, sir? Do you know what I'm dealing with, sir? Are you hooked up to a machine for four hours, sir?'” said McGinley, whose personal nurse eventually calmed her down. “He got Xanax for me right away,” she said.

Anti-depressants helped McGinley cope with her predicament, which proved challenging both mentally and physically. For instance, she was initially treated with hemodialysis, which required a chest catheter. “It's a weird thought to be hooked up to something and have your blood taken out [and cleaned] and pumped back in,” she said. “It made me cringe at times. But it [also] made me really sick.”

Confined to a small corridor in the hospital, McGinley occupied her time by watching Netflix or logging on social media, which proved to be a mistake; she had been forced to quit her production jobs, but was reminded of the fun she was missing by her colleagues' photos on Facebook and Snapchat.

“I was just so depressed,” she said. “I would cry uncontrollably.”

Eventually, she reached a point of acceptance.

“I'm really grateful that this is what is wrong with me, though, because it could've been cancer,” she said. “I'm on Medicare. There are so many diseases that are not recognized … by the government. … It's manageable. I'm not necessarily going to die because I have dialysis.”

There is also the option of getting a kidney transplant, which would eliminate the need for dialysis. McGinley is currently undergoing rigorous medical testing to be cleared to get on the kidney transplant list. Unfortunately, her small group of family members are not ideal matches.

“My sister has late-stage Lyme disease,” she said. “My mom is in her 70s. My dad's in his 80s. My grandma's in her 90s.”

“Thankfully, I have a big network,” she continued. “So I've had a handful of people offer to see if they're a match.”

Acceptance of her disease also allowed her to return to the idea of making a documentary. “I got OK with the fact that I'm the kidney girl,” she said. “So I started filming myself crying.”

In addition to her emotional diaries, viewers can expect to see how McGinley manages peritoneal dialysis, a home treatment that requires a belly catheter. Patients can either manually attach a plastic bag of cleansing fluid to the tube or hook themselves to a machine for automatic cleansing.

“I used to have to do it manually four times throughout the day,” McGinley said. “I remember going to Cleveland for a wrap party for one of those movies that I had to quit and I had to dialyze in the car on the way there. I had to dialyze before going into the party. I had to dialyze on the way out.

“And I had to do a test at that point where I was collecting my urine for 24 hours. So I had a cooler in my car that I was filling up, running out of the party with my urine. It was very awkward. I filmed it.”

Now, she dialyzes with the machine while sleeping at night.

McGinley is capturing these day-to-day experiences using mobile devices and GoPro cameras, while Elevate Pictures films major events like doctor appointments and a visit to the National Kidney Foundation in July.

“We're still in the beginning stages of this and we're a couple months into starting collection of data,” Bielski said. “Hopefully we will start to get permissions from OSU and the transplant team to actually go in and film.”

A release date for the documentary will be determined after McGinley receives word about a transplant. In the meantime, McGinley is sharing her journey via her blog on johannamcginley.com.

“It's unbelievable how strong a person can be when facing a life-threatening situation,” Bielski said. “In Johanna's case, she's taking her story and this horrible, negative thing that she's experiencing and turning it around into something that she can own.”

“I want to raise awareness by showing a younger person's story,” said McGinley, who also admits the project helps keep her mind busy and allows her to satisfy her “craving” for film, since she can no longer work as much as she used to. “A lot of it is to [maintain] my mental health and [keep] me feeling like I'm still in my world.”

While McGinley is uncertain about the status of her film career following her transplant, she knows she wants to approach life differently.

“I don't know if I'll go back to working the way I did,” said McGinley, who shared plans to sell her condo and buy a camper van so she can travel more. “I'm happy when I'm working, but that's not what life is about and it's kind of what I'm realizing now. I want to experience [things] before I can't anymore.

“People always say, ‘Oh, I'll do it one day. I'll do it someday.' Well, when you're older, more health problems happen, so you might not be able to. We've got to do it now while we're young and healthy. So now all I want to do is get that transplant so I can go see places before it's too late.”