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(CNN) —  

Erika Zak and her family moved across the country more than a year ago to be near the Cleveland Clinic. They wanted to be ready at a moment’s notice for a liver transplant that could save her life.

She and her husband, Scott Powers, thought the move would last three months, maybe five. That she would get a new liver and begin the slow process of recovery. Instead, she’s been mired in the bureaucratic process of who gets an organ and who dies.

“We’ve been waiting and waiting and waiting,” says Erika, 39. “I’m losing hope that I will ever get a liver.”

She vomits blood. Her skin peels off. Her legs, hips and feet swell to the point it feels “like I’m carrying an extra person on me.”

Five years ago, after her initial cancer diagnosis, she wrote to her newborn daughter, Loie, that she hoped to be around “to tell you this story has a happy ending.” She survived cancer, but surgery to remove two tumors went terribly wrong and severely damaged her liver. The conversations with her daughter have grown more sobering.

“Mommy can’t do this for much longer,” she tells Loie. “There’s a chance we might go home soon to Portland.”

“But that means you won’t get a liver,” Loie responds.

“I know that,” Erika says.

“That means you’re going to die,” her 5-year-old girl says.

“That’s right. That is what will happen.”

Although Erika says she's scared of death, she says, "I'm more scared of what I leave behind."
Kristyna Wentz-Graff/Oregon Health & Science University
Although Erika says she's scared of death, she says, "I'm more scared of what I leave behind."

A social media outcry

CNN first reported on Erika’s case on Mother’s Day in 2018. Her saga then was a battle with UnitedHealthcare after the insurance giant denied her coverage for a transplant. Desperate, the young mother penned a plea directly to the CEO of UnitedHealth Group, David Wichmann.

She blasted what she called the “shockingly incompetent manner” in which the nation’s largest insurer handled her case, describing a a series of errors made in the review process. “Given that my life hangs in the balance based on this review,” she wrote, “it is unconscionable it has not been undertaken with the level of competence and professionalism anyone would expect of UHC.”

Erika says she desperately wants to get healthy to see her daughter grow up.
Family Photo
Erika says she desperately wants to get healthy to see her daughter grow up.

The insurance giant did ultimately approve her coverage – a decision that came shortly after the family informed the insurer they had turned to the media to get her story out.

A social media outcry ensued with people far and wide lending Erika their support, dumping on insurers and creating the hashtag #ErikaZak. Some went so far as to offer their own livers, although she needs a liver from a deceased donor. A family in Cleveland opened their home rent-free.

Erika, Scott and Loie picked up their belongings in Portland, Oregon, and transported their lives.

’One more push’

As the months passed, CNN readers, concerned about Erika’s health, wrote asking about her condition and implored the network to do a follow-up story.

Erika wasn’t ready to talk. She chose to remain quiet for the last 15 months, almost resolved to her fate – whatever it might be. But a recent note from a friend stirred up her fight again.

Her friend told her he was at rock bottom five years ago when he read her blog about her cancer battle. “He snapped out of it and is flourishing now,” she says.

“That kind of lit a fire under me to say, ‘OK, I’m going to do one more push. I’m going to try one more time to get the word out to try to get my liver.”

She turned to Twitter last Sunday and wrote her first tweet: “And I still wait. Time is running out.”

Family, friends and strangers alike rallied. “I feel beyond loved and supported by all of you these past couple days,” she wrote on Instagram. “I reluctantly asked for help thinking I had nothing more to lose. I am in awe of the power of community, connection and your compassion.”

She agreed to speak to CNN only by phone. She didn’t want to talk on camera or be photographed anew. “I just don’t want anyone to see me like this,” she says.

With the clock ticking, she says, it’s important to make people “more aware of how dire my situation is.” She says UnitedHealthcare has covered her care in Cleveland and that there haven’t been any new insurance issues.

Her battle now is to live. She is confined mostly to bed. Over the years, she survived 70 rounds of chemotherapy to treat colorectal cancer, multiple procedures and a microwave ablation surgery that went terribly wrong and left a fist-sized hole in her liver. Pain arcs through her body. “Liver failure is the worst thing ever,” she says. “Seeing your body evaporate is the worst.”

Erika wrote a note for her daughter  if she does not survive: "I am with you always; even if you can no longer see my face or feel my hands through your hair."
Family Photo
Erika wrote a note for her daughter if she does not survive: "I am with you always; even if you can no longer see my face or feel my hands through your hair."

Despite it all, she still has grit. She isn’t ready to die. Not yet. “I’m definitely scared of death,” she says. “But there’s more I want to do. There’s more that I want to see; more life I want to live.”

She thinks of her husband who stole her heart 19 years ago, of her 5-year-old girl who makes everyone laugh.

“I’m more scared of what I leave behind.”

The long wait for a liver

More than 13,500 Americans were on the wait list for livers in 2018. A total of 8,250 received liver transplants last year, including 7,849 transplants from deceased donors, according to the United Network for Organ Sharing, or UNOS, the nonprofit group that manages the nation’s organ transplant system.

Another 5,121 people have undergone liver transplants so far this year, according to UNOS statistics. The sad reality, the organization says, there are more people in need of organs than donors. In 2018, 1,170 people died while waiting for livers, UNOS said.

“Our hearts break for Erika and her family and the many others like her who continue to wait for a transplant,” UNOS said in a written statement to CNN.

Most frustrating for Erika, her “MELD” score – the ranking that is used to prioritize who gets an organ – reached a high of 30, the average score at which most people undergo a transplant. But a national policy change knocked her score back to 23, almost exactly where she was more than a year ago. Her doctors have continued to appeal for “exception” points to reflect Erika’s urgency and raise her MELD score.

Erika and Scott Powers met in college while they were both in school in Rhode Island.
Family Photo
Erika and Scott Powers met in college while they were both in school in Rhode Island.

“We just wish her doctors’ opinions in a situation like this would be most important,” her husband says.

In its statement to CNN, UNOS said the policy change “was meant to make the exception scoring process more fair across the United States and help as many people as possible while making the system more equitable.”

“We are acutely aware that this can feel otherwise when a patient or a loved one is on the waitlist and their program’s request for a specific score is declined,” UNOS said. “Our goal is to make the system equitable and save as many lives as possible by getting the right organ to the right person at the right time. We strive every day to reduce the number of the people who die waiting for an organ despite the fact that the need for them far exceeds the available supply.”

UNOS then made a direct appeal for people to sign up to become organ donors at registerme.org, saying, “This single act of generosity can help Erika, others on the waitlist, and those who will be on the waitlist at some future date.”

On Twitter, Erika ripped UNOS for not fixing its “unintentional flaws in new policy” and for using “low organ donation rates as scapegoat for my critical situation (& others).”

The tattoo on Erika's right rist reads, "Be brave."
Wayne Drash/CNN
The tattoo on Erika's right rist reads, "Be brave."

Dr. Andrew Cameron, the chief of transplant surgery at Johns Hopkins and the surgical director of its liver transplant program, is not part of Erika’s team and not affiliated with UNOS. But he has followed Erika’s ordeal.

He says her story is heartbreaking and unfortunately “far too common in the United States.”

“Her situation pulls at our heart strings,” he says. “But I am still pulling for her lottery ticket to come through.”

“I am hopeful that she’ll get a transplant in time. I am very sympathetic with how hard it is to wait,” he says. “Living your life in liver failure is a terrible proposition and the uncertainty of not knowing when a transplant will come can make it almost impossible for a patient and their family.”

Erika says her fight is bigger than herself. She hopes her story raises awareness of the need for more organ donors and the “insane” process for those who wait.

“I’m just angry,” she says. “Sometimes I don’t know if it’s an imbalance in my brain or me being completely fed up with the whole situation.”

“I’m angry my MELD score was lowered. I’m angry that my independence is completely gone.”

Saving Erika

For her loved ones, the red tape has added to the pain of seeing her suffer. Her twin sister, Jenna Zak, posted a photograph on Instagram of Erika sprawled on a hospital bed, tubes and IVs hooked up to her seemingly everywhere.

“This is the photo I took of my sister after she almost bled to death due to her liver failure,” Jenna wrote Wednesday, tagging UNOS public relations in the post. “Do you take this into account when you deny her points? Do you factor in she coughs up cups of blood because her liver is failing?”

Jenna has begun tagging anyone with UNOS she can find on social media – a scorched Earth strategy to fight for her sister to the very end. “Their policy change, they were trying to do the right thing. But they didn’t consider people like my sister,” she says. “We don’t think they’re bad people, but they’re not doing the right thing here. They’re not saving my sister.”

“I don’t want her to be in pain anymore,” she adds. “The only way that can happen is if she dies or if she gets this transplant.”

As a twin, Jenna’s emotions are a complex feeling of helplessness and guilt mixed with determination to save Erika. Over the last five years, as Erika fought for her life, Jenna got married, had a child and succeeded at work. “There’s guilt involved in that,” she says. “A lot of times I don’t know what to do or what to say to Erika. I wish I could take the pain away, but I can’t.”

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She wonders: “Why has she had all these health issues and not me?”

She plans to help Scott raise Loie as best she can, though she would prefer her sister get the transplant and flourish. “It’s just not fair,” she says. “I’ve literally never seen somebody fight so hard to live.”

In Cleveland, Erika offers this wisdom for people in good health: When she closes her eyes and daydreams, she thinks, “God I wish I never took a moment for granted. I wish I had done all the things I was always scared to do.”

“You can’t understand real suffering – even if you’re witnessing it – unless you’re going through it,” she says. “You can describe it to your friends and family. They can watch it, but they obviously don’t know what’s happening to your morale, your body and everything else.”

“True suffering,” she says, “it’s next level.”