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I never knew my maternal grandfather, who died of cirrhosis of the liver before I was born.
This latest story from South Dakota News Watch reminds me of this unfilled space in my childhood.
Alcohol's impact: 35, dry and dying
By Megan LutherChronic liver disease is now the leading cause of death of South Dakotans in their 30s.
OMAHA, Neb. – Taylor Nielsen rests in a room with a view. The wall-to-wall windows feature midtown on an overcast afternoon in late March. The natural light makes the hospital room more tolerable but exposes just how yellow Taylor’s skin is.
He drifts in and out of sleep. His dad, David Nielsen, hovers over his only child, places his right hand on Taylor’s swollen belly. Fluid has bloated Taylor, pooling around his barely functioning liver.
David, 72, hopes his son’s suffering isn’t in vain. He encourages Taylor to share his experiences. “So we can help at least one to maybe thousands of people avoid going through this, right?”
Taylor nods.
Years of drinking have caught up with the 35-year-old. His liver has given out as have his kidneys. Taylor is dying.
All that can save him now is a liver transplant. He was flown from Monument Health Rapid City Hospital in South Dakota to Nebraska Medical Center in hopes of being approved.
Taylor’s gone through extensive testing, including blood work and a psychological evaluation. The transplant team will decide whether he’s a candidate for a new liver. Taylor and David expect to hear the answer today.
Alcohol-disease deaths skew younger
I met Taylor once before. Two years ago, we had dinner at his dad’s, my neighbor in South Dakota's Black Hills.
Taylor has aged decades since then: hair thinning, face gaunt, body skinny. A tube snakes into his nose for nutrition.
Historically, most alcohol-associated liver disease deaths occurred in men in their 50s and older. But deaths are skewing younger.
For the first time, chronic liver disease is the leading cause of death of 30- to 39-year-old South Dakotans, according to the state Department of Health. Nearly all were caused by alcohol.
The beginning
Taylor wasn’t always a drinker. Growing up, he watched his mother struggle with alcohol and drugs, something he wanted to steer clear of.
But image is important to Taylor and he wanted to fit in. At summer house parties, he’d take a sip of beer, leave it and grab a second, wasting alcohol and annoying his best friend, Adam Bradsky.
“I remember talking to him like, ‘Taylor, it's fine if you don't drink. Just don't waste the beer.’”
It was after college when his friends and family grew concerned about his drinking. Adam vividly remembers the day he realized it was a problem. He stopped by Taylor’s place in rural Lead, South Dakota, on a random Wednesday. Taylor was on a tractor, haying, drunk. It was noon.
Taylor remembers his downward spiral starting in 2017 after his mother took her own life. “I had to pick up my mom's ashes. And it really triggered me.”
He reached for vodka.
South Dakota saw record liquor store sales during the pandemic, with $126 million in 2021 sales when adjusted for inflation and seasons, according to the Dakota Institute. The numbers don’t account for sales at grocery stores, bars or restaurants.
While they’ve declined the past few years, sales have yet to go down to pre-pandemic levels. Last year, liquor sales were still up 20% from a decade ago.
The news
It’s another March morning at Nebraska Medical Center. Taylor is quiet.
He and David expected the decision yesterday but haven’t heard from the doctors.
Most patients who need a liver aren't this young: Last year, the average age of a person listed for a potential transplant was 56.
Determining who receives a donated liver – or even gets on the waiting list – is a complex process. Many factors influence a candidate's chances, including their blood type, underlying diagnosis and medical urgency. Over the years, roughly 2 out of 3 candidates ultimately received a liver.
A hospital staffer walks into Taylor's room: “Hello. Hi. I'm with transport. We're going to be taking you down to dialysis.”
David waves goodbye. “Make your kidneys better, bud.”
Minutes later, David gets a phone call – the phone call. After niceties are exchanged, the doctor says Taylor doesn’t meet the criteria.
“I almost said, ‘Oh, they just gave him a death sentence,’ but I didn't do that,” David says.
The stigma and shame
The Nebraska Medical Center declined to answer questions about Taylor’s case or liver transplants in general. It’s one of the biggest liver transplant centers in the region, recording just over 600 transplants in almost six years, behind Mayo Clinic in Minnesota.
People like Taylor represent a growing share of liver transplant candidates. Thirty years ago, about a quarter of the candidates were listed with an alcohol-related liver disease. Last year, they represented nearly half. The majority of these patients ended up with a liver.
There's a stigma, of course, but Jenn Jones of Aurora, Colorado, who almost died from alcohol-associated liver disease, is working to minimize that. She points out that doctors also approve new livers for those who suffer from overeating.
The shame patients go through is so overwhelming that Jenn founded Sober Livers, an organization to support those suffering from alcohol-associated liver disease, pre- and post-transplant patients.
She hopes the general public will provide empathy. "As long as the person is willing to get help, stop drinking ... why would we not want that person a part of our society?"
David’s not giving up and contacts a friend at another facility.
Father becomes caretaker
After multiple phone calls and networking, it’s clear to David that Taylor needs to get healthier and log more sober days before doctors will consider him for a transplant.
In early June, Taylor’s well enough to come home and live in the Black Hills with David. At 72, he didn’t think he’d be taking care of his 35-year-old son. “I thought maybe the other way around.”
In July, after one routine 45-minute trip to Spearfish, South Dakota, for dialysis, Taylor decides to stay, and a friend gets him a motel room.
Over the next two weeks Taylor reaches out to a lot of contacts, asking for a ride or money. He may sound like a desperate man trying to buy a drink, but when he talks on the phone, Taylor's words don't slur.
Friends and family also don't believe he's drinking.
His dad arranges for a hospice bed, if he’s willing to go. “I'm not in bad health,” Taylor says. Denial is a strong demon.
One morning, he's found unresponsive and rushed to Monument Health Spearfish Hospital.
Taylor never wakes up.
“He’s finally at peace,” David says.
Editor's note: Monument Health Rapid City Hospital's public relations manager, Stephany Chalberg, also serves on the board of directors of South Dakota News Watch.
This story was produced by South Dakota News Watch, an independent, nonprofit news organization. Megan Luther is a freelance journalist for South Dakota News Watch, based in Mitchell, South Dakota. She has been in recovery for four years. Contact her at [email protected]. Freelance journalist Cody Winchester contributed to this report.
Reprinted with permission.
Photo: David Nielsen of Lead, S.D., checks the bloated stomach of his son, Taylor Nielsen, on March 27, 2024, at Nebraska Medical Center in Omaha, Neb. His liver is so damaged that fluid builds in his abdomen. (Photo: Megan Luther/ South Dakota News Watch).
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