LA CRESCENT, Minn. — For the first 32 years of her life, Sarah Wantoch was the picture of health.
For the past 12 months, she has suffered one ailment after another, leaving her hospitalized for days on end and, at times, barely clinging to life.
Wantoch, 34, of La Crescent was still coping with the death of her day-old daughter, born prematurely in May 2016 at just 23 weeks, when she developed severe jaundice in August. Her bilirubin levels were elevated and her body was beginning to shut down, but her doctors were at a loss for a cause.
“There were tests and biopsies and pokes and prods of all kinds,” Wantoch recalled, sitting in the La Crosse living room of her mother, Lois Becker. “With my mom’s help, love and support and kindness, and her drive, I finally got to Rochester.”
It was at Mayo Clinic that Wantoch received a diagnosis: alpha-1 antitrypsin deficiency. In addition to the incurable genetic disease, which can lead to liver or lung disease, Wantoch had contracted hepatitis A, a liver infection usually spread through contaminated food or water.
“The doctor said it was like a perfect storm,” Becker said.
Suffering liver failure and a host of associated health problems, including a hernia and a recent near-fatal failing of her kidneys, Wantoch has drained her bank account and her wedding fund to pay for the medical costs her Cobra insurance and MinnesotaCare will not cover.
Though hesitant to share her struggle with those beyond her inner circle, family, friends and community members have stepped up to help, and are hosting a benefit, Sunshine For Sarah, from noon to 4 p.m. Sunday at Moxie’s, 1835 Rose St., La Crosse. Dozens have reached out to Becker to contribute in some way.
“Sarah is like one of those bright and shiny objects that every once in awhile you find on the beach and you’re so happy that you found it,” said family friend and event co-organizer Kirsten Scheller. “She has a personality that draws you to her. She is someone who makes you smile when you see her coming in the door. She’s genuine, she’s open-hearted.”
More than 10 individuals are on the event planning committee, and numerous businesses and community members have contributed silent auction items, including a trip to Las Vegas, a luxury yacht cruise and Wisconsin Badgers tickets. The event will also feature live music from Bri and the Boys, food and raffles and a silent auction with big ticket items. Wantoch hopes to attend, pending her health.
“It’s very humbling,” Wantoch said. “People are so gracious. I’m lucky to live here and to have the friends and family I do. It puts a smile on my face.”
Wantoch’s optimism has been tested often during the past year. In January, having already missed work weeks at time for hospitalizations, Wantoch left her job at Wis-Pak and relies on her fiance, John Doering, to do housework and her mother to drive her to appointments. Her day-to-day health is unpredictable, ranging from extreme fatigue to fluid retention so severe she is unable to bend her legs.
Suffering from Ascites, fluid accumulation in the abdomen, Wantoch undergoes weekly therapeutic paracentesis for drainage.
The extreme buildup of fluid pushes on the lungs and ribs, leaving breathing and eating painful and difficult. Wantoch takes up to 40 pills a day, including diuretics. Her hemoglobin levels are low, her potassium levels fluctuate, and she is anemic, receiving regular blood transfusions. Elevated ammonia levels bring on her most frightening symptoms — confusion, memory loss, slurring of speech and delirium.
“There was a day she thought someone was chasing her and she stumbled outside in the snow, barefoot,” Becker recalled. “She was all black and blue.”
Wantoch, who will need a new liver, has worked through a lengthy organ transplant checklist and met with specialists in Rochester.
Her older brother, Tony, is a match and has offered to donate half his liver — liver cells regenerate to near full size within two months — but must undergo “a whole gamut of testing,” both physical and psychological.
Wantoch’s younger brother Tim is also willing to be a donor, but she will still need to be on the recipient list before she can undergo the transplant, should the procedure go wrong and a full liver be needed.
Becker describes the transplant requirements as a catch-22 — Wantoch must be sick enough to move to the top of the list, but healthy enough for her body to recover.
“The longer you wait, the sicker she gets. She’s weaker, she’s frail,” Becker said.
The stress of Wantoch’s condition weighs on Becker. Employed by Wettstein’s until the store closed last month, she was on call constantly, ready to leave work at the drop of a hat when her daughter would call in need of urgent care.
“It’s probably one of the hardest things I’ve had to go through in life,” Becker said. “You stay awake at night, you don’t sleep well, you’re scared. Obviously, one of the worst fears in your life is take have something wrong with your child or to lose your child.”
Wantoch’s doctors are unable to give her a timetable for either her transplant or her life expectancy. While she was “a little bitter at first thinking about my mortality,” she is comforted by her family and friends.
“I have my days that are more difficult than others, but I have so many people I can call and say, ‘Hey, I’m having a bad day,’ and they make me feel better,” Wantoch said.
Wantoch looks forward to marrying Doering once her health is more stable, and hopefully having children. She is grateful for the well wishes and support.
“This whole area is full of people who care,” Wantoch said.
Scheller says Wantoch is well deserving of love and support.
“She’s worth every effort that we’ve all put in, as she such a great person,” Scheller said. “I’m so happy to know her.”
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