Erika Zak, a mom who inspired millions of people in her struggle for a liver, dies at age 39



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Her death came after the availability of a liver Thursday afternoon and her transplant team from the Cleveland Clinic rushed to prepare her for surgery, Powers said.

The news of liver availability has boosted Erika 's spirit and sparked the enthusiasm of her surgical team and her family after waiting over a year for the moment, he declared. Before being operated on, Erika was able to spend time with her 5-year-old daughter Loïe.

"Yesterday, the stars lined up briefly while we were in the hospital for an unrelated medical procedure.An organ became miraculously available for a transplant.We were so excited and rushed our daughter into the goal to spend half an hour with Erika, "said the family. in a report. She then quickly entered the operating room, but at the bottom of the operation, her body apparently could not bear some of the trauma.He died as a result of an operation.

"Although our family is devastated by the loss of our beautiful wife, mother, daughter, sister and friend, we would like to express our deepest gratitude to all those who supported Erika and our family during these very difficult weeks, months and years. Through her perseverance in life, Erika embodied hope and set an example of strength. "

& # 39; Army of Ericka & # 39; the inspired

During a phone conversation, her husband held back her tears.

"It's more than devastating," said Powers. "She loved Loïe more than anything, she desperately fought to be with her, it's just unbearable to not have spent a day, weeks or years in good health with Loïe."

He said his family was "forever grateful" for the outpouring of love received by Erika, inspired by "Erika's Army", the social media warriors who had defended his cause and spread his story off. She maintained her sense of humor and zeal for life until the end.

"She was so grateful for what happened last week," said Powers.

The family has set up a GoFundMe page for funerals and other expenses. They asked for privacy during this time.
A cancer survivor, Erika Zak, said that a liver disease was excruciating:

In her last conversation with CNN, Erika explained why she was saying, "It's like everything is a battle, and it should not be that way." It sucks because most people do not know not that they can defend themselves. "

"There is more that I want to see, more life I want to live," she says.

From death, she said, "I'm more afraid of what I leave behind me."

"I spend a lot of time dreaming about what I would like to do with Loie and Scott if I were in good health and where I would like to go," she said.

She wanted to go with them to an isolated place with a blue lagoon and a waterfall. "When I say that I dream a lot, I say to myself:" My God, I would never take a moment for granted. I would have liked to have done everything that I was always afraid to do. "

Commentary from the American Liver Foundation

Thomas Nealon, President and CEO of the American Liver Foundation, said that Erika 's fight to get the best care possible and his willingness to survive galvanized the entire liver community. a way that he had never seen before, with thousands of people asking for help.

He said that "the thoughts and prayers of the entire community of the American Liver Foundation are going to Erika and her family."

Erika said that her desire to live was motivated by her daughter, Loïe.

"I have just heard the incredibly sad news about the death of Erika," he said. "She was such a powerful voice for liver patients facing the uncertainty associated with liver transplantation.For so many people, the expectation and inability to control their treatment and their fate cause pain and distress to patients and their families. "

"I hope that all those who have been touched by his story will devote themselves to that there is no longer Erika Zaks."

In the last few weeks, as her condition was deteriorating, she vomited blood, her skin peeled and she said her legs, feet and hip were so swollen that I had "I wear another person on me".

"You can not understand the real suffering – even if you witness it – unless you cross it," she said. "You can describe it to your friends and family, they can look at it, but they obviously do not know what's going on with your morale, your body and everything else."

"The real suffering," she said, "it's the next level."

Couple met in college

Erika and Scott Powers met in 1998 when he was at Brown University and Rhode Island School of Design, both in Providence.

Both were polar opposites. He was the most valuable player of Brown's football team and specialized in economics. She was in the arts and specialized in textile design. He was originally from the east coast, tightly coiled, and from the west coast coasting.

A love is born. He made her laugh and felt beautiful. Erika saw in him some one of kind and devoted; in it, he found the woman he had always sought, with a sense of captivating humor and a sailor's mouth.

They partied at Halloween in 2009.

No matter what was thrown at them, their bond became stronger. "Liver failure is the worst thing," she said.

Erika and Scott Powers met at the university while they were both at school in Rhode Island.

For the past five years, Erika has survived 70 cycles of chemotherapy to treat colorectal cancer, multiple procedures and a microwave ablation that went terribly wrong and left a hole in her liver. About a year and a half ago, his health insurance company, UnitedHealthcare, refused him coverage for the transplant.

"Time is counted"

Desperate, the young mother has appealed directly to UnitedHealth Group CEO David Wichmann. She criticized what she called the "outrageously incompetent manner" in which the country's largest insurer handled her case, describing a series of mistakes made during the review process.

"Since my life depends on this article," she wrote, "it is unacceptable that this has not been undertaken with the level of skill and professionalism that one would expect from the CSU ".

The insurance giant has finally approved its 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 face more paperwork. His score "MELD" – the ranking used to determine who gets an organ – has reached a peak of 30, the average score at which most people undergo a transplant. But a national policy change this spring brought her score back to 23, said her family, almost exactly where she was a year ago.

Exhausted, she joined Twitter two weeks ago. "And I'm still waiting, time is running out," she says.

Even as her health deteriorated, she urged people to sign up to become organ donors in order to save the lives of others. "We are overwhelmed with love and this incredible community of people – friends and strangers," she wrote on Instagram. "I cross my fingers so that we can make a difference for me and for many like me."
In one of her latest articles, she included the words of a poem on Emily Dickinson's grief:

"I measure every grief I meet
With analytical eyes;
I wonder if it weighs like mine,
Or has an easier size.
I wonder if they have been wearing it for a long time,
Or did he just start?
I could not tell the date of my
It's so old a pain.

I wonder if it hurts to live,
And if they have to try,
And if, could they choose between,
They would not die rather.

I wonder if, when years have accumulated –
A few thousand – on the cause
From early evil, if such an error
Could give them a break. "

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