Erika Zak, the mother who inspired millions through her resilience to fight for a liver transplant, died early Friday during surgery, her husband, Scott Powers, told CNN. She was 39.
Her death came after a liver became available Thursday afternoon, and her transplant team at the Cleveland Clinic hustled to prepare her for surgery, Powers said.
The news of the available liver buoyed Erika’s spirits and spread excitement among her surgical team and family after waiting more than a year for this moment, he said. Before going into surgery, he said, Erika was able to spend time with the couple’s 5-year-old daughter, Loïe.
“Late yesterday the stars briefly aligned while we were at the hospital for an unrelated medical procedure and an organ miraculously became available right then for transplant. We were so excited and rushed our daughter in to spend a half hour with Erika,” the family said in a statement. “She then quickly went into the OR, but deep into the surgery, her body couldn’t handle some of the trauma apparently. She died in surgery.
“While our family is devastated by the loss of our beautiful wife, mother, daughter, sister and friend, we do want to express our deepest gratitude to all of those who have supported Erika and our family through these very difficult weeks, months and years. Through her perseverance in life, Erika embodied hope and set an example of strength.”
‘Erika’s Army’ inspired her
In a phone conversation, her husband fought back tears.
“It’s beyond devastating,” Powers said. “She loved Loïe more than anything, she fought desperately to be with her. It’s just excruciating that she didn’t get to spend a day or weeks or years healthy with Loïe.”
He said the family was “forever grateful” for the outpouring of love Erika received – that she drew inspiration from “Erika’s Army,” the social media warriors who took up her cause and spread her story far and wide. She maintained her sense of humor and zeal for life to the end.
“She was so appreciative of what happened the past week,” Powers said.
The family has set up a GoFundMe page for her funeral and other expenses. They have asked for privacy during this time to grieve.
In her final conversation with CNN, Erika described why she was speaking up: “It just feels like everything is a battle, and it shouldn’t be that way. It sucks because most people don’t know that they can fight back.”
“There’s more that I want to see; more life I want to live,” she said.
Of death, she said, “I’m more scared of what I leave behind.”
“I basically spend a lot of time daydreaming about what I would want to do with Loie and Scott if I was healthy and where I would want to go,” she said.
She longed to go with them to a remote place with a blue lagoon and waterfall. “When I say I daydream a lot, it’s like: ‘God I wish I never took a moment for granted. I wish I had done all the things I was always scared to do.’”
Comment from American Liver Foundation
Thomas Nealon, the president and CEO of the American Liver Foundation, said Erika’s fight to get the best possible care and her will to survive galvanized the entire liver community in a way he’s never seen before, with thousands of people reaching out to help.
He said the “thoughts and prayers from the entire American Liver Foundation community go out to Erika and her family.”
“I just heard the incredibly sad news about the passing of Erika,” he said. “She was such a powerful voice for liver patients facing the uncertainty of liver transplantation. For so many people, the waiting and inability to have control over their treatment and destiny puts patients and their families through incredible pain and distress.”
“It is my hope that all of those who have been touched by her story dedicate themselves to make sure there are no more Erika Zaks.”
In recent weeks, as her condition deteriorated, she vomited blood, her skin peeled off and she said her legs, feet and hip grew so swollen it felt “like I’m carrying an extra person on me.”
“You can’t understand real suffering – even if you’re witnessing it – unless you’re going through it,” she said. “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 said, “it’s next level.”
Couple met during college
Erika and Scott Powers met in 1998 when he was at Brown University and she was at the Rhode Island School of Design, both in Providence.
The two were polar opposites. He was the MVP of Brown’s soccer team and majored in economics. She was into the arts and majored in textile design. He was from the tightly wound East Coast, she from the free-wheeling West Coast.
A love was born. He made her laugh and feel beautiful. Erika saw in him someone who was kind and devoted; in her, he found the woman who he’d always searched for, with a captivating sense of humor and a sailor’s mouth.
They tied the knot on Halloween in 2009.
No matter what was thrown at them – their bond grew stronger. “Liver failure is the worst thing ever,” she said.
Over the last five years, Erika 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. About a year and a half ago, her heath insurance company, UnitedHealthcare, denied her coverage for the transplant.
‘Time is running out’
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 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.”
The insurance giant did ultimately approve her coverage after a four-month delay. Erika, Scott and Loie picked up their belongings in Portland, Oregon, and transported their lives to Cleveland.
But she would run into more red tape. 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 this spring knocked her score back to 23, her family said, almost exactly where she was a year ago.
Exhausted, she took to Twitter two weeks ago. “And I still wait. Time is running out,” she said.
Even as her health worsened, she urged people to sign up to become organ donors to save the lives of others. “We are overwhelmed with love and this amazing community of people – friends and strangers,” she wrote on Instagram. “Fingers crossed that we can make a difference for me and so many like me.”
In one of her final posts, she included the words to a poem on grief by Emily Dickinson:
“I measure every Grief I meet
With analytic eyes;
I wonder if It weighs like mine,
Or has an easier size.
I wonder if they bore it long,
Or did it just begin?
I could not tell the date of mine
It feels so old a pain.
I wonder if it hurts to live,
And if they have to try,
And whether, could they choose between,
They would not rather die.
I wonder if when years have piled –
Some thousands – on the cause
Of early hurt, if such a lapse
Could give them any pause.”