Alcohol's impact: 35, dry and dying while waiting for a transplant
Chronic liver disease is now the leading cause of death of South Dakotans in their 30s. “Alcohol is particularly challenging because it's prevalent. It's relatively cheap, and it's not in any way illegal."
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. He's in excruciating pain. 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.
A nurse walks into Taylor's room asking about the barely touched breakfast tray.
“I got him to eat a couple of bites, that’s about it. He was having tummy aches, so it's not a fun time to eat,” David adds.
Taylor has good days and bad. Sometimes he’s coherent, other times Taylor hallucinates. “Last week, he was talking up a storm,” David says.
Today is a quiet day, but Taylor mumbles that he’s not really hungry. He’s nervous to hear from the doctors.
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.
Observing David, you wouldn't guess he's waiting for life or death news. He's calm, positive and tries to lift his son’s spirits. David, a lifelong veterinarian, knows enough about medical issues to ask questions. He’s Taylor’s biggest advocate.
“For what he's going through, he's doing really quite well,” David says. “When he's on a roll, he's on a good positive roll and he wants to help others, so it's beautiful.”
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.
A once strong, howling wolf tattooed on his left forearm now looks malnourished on its shrinking, yellow canvas. Taylor, a former wildland firefighter, weighed 190 pounds. Now his 6-foot-2 frame is down to about 120.
He’s feeble, using a bedpan because he can’t walk to the bathroom. The hospital staff tries. He's seen regularly by a physical therapist. The goal, someday, is to get Taylor to walk 100 feet. Today, they work on standing and taking a few side steps next to his bed. It's a process, but with the therapist holding on, Taylor stands.
"Nice job, dude. Very good," his therapist says. "Let's take a couple steps to your left, OK?"
Taylor steps forward.
"I want you to step to your left side. Yep, 'cause we're not moving forward, OK? Move that way," the therapist instructs him.
"I'm trying to." Taylor, confused and frustrated, says he has to go to the bathroom, ending what little progress he's made.
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. 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.’”
They met in high school in Rapid City when Taylor decided to live with his dad. He grew up with his mother in Ohio and visited David in the summer. When he was 15, Taylor decided to stay.
Taylor’s goofy with a great sense of humor. He's a confidant, who listens to Adam without judgement. “I don't think he ever betrayed my trust with any kind of secrets or anything that I ever told,” Adam says.
They both ended up going to the University of South Dakota. Adam left with a law degree. Taylor left a year before graduation. Follow-through is not Taylor’s strong suit.
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. 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.
Drinking and mental health
Alcohol is by far the most commonly abused substance seen by Monument Health Rapid City Hospital. And it causes the most mortality and morbidity, says Stephen Tamang, M.D., a board-certified addiction medicine physician.
“Alcohol is particularly challenging because it's prevalent. It's relatively cheap, and it's not in any way illegal. In fact, in some ways, it has a positive association,” he says.
Excessive drinking can permanently alter the brain. Alcohol becomes air, and an addict can’t get enough.
Sometimes a person gets sober after hitting rock bottom, the lowest point of their life. It’s unclear if Taylor has one. “We should’ve been there by now,” David says.
Taylor didn’t stop when his wife left, when he lost countless jobs or when his dad kicked him out of his home. He went to rehab and had short stays of sobriety. His longest: 260 days.
During that period, Taylor met Tory Long in 2021. "When I met him, he was vibrant. He was just beautiful, full of life. He was vigorous. He was sober," she says.
His loved ones suspect Taylor also struggles with mental illness. Upwards of 80% of alcoholics have struggled with mental issues, whether that’s before or because of drinking. Taylor doesn’t remember ever being diagnosed.
“I have no (expletive) clue, but no one's ever said anything of the countless doctors I’ve seen,” he says.
A family disease
At their lowest, David called the sheriff to remove Taylor from his home after he broke in and wouldn't leave. David threatened him with a restraining order and the two became estranged until this year when David got the call Taylor was hospitalized.
Addiction is a family disease. Parents try to do all they can to save their child, sometimes to their own detriment.
Kim Humphrey of Phoenix, a former police officer, and his wife watched both of their children struggle with addiction. It put a strain on their marriage and health.
“We were to the point of becoming very reclusive and not going out and such depression that, you know, we just didn't want to do anything,” he says.
Bart Pfankuch
He and his wife started attending Parents of Addicted Loved Ones (PAL) support meetings. The nonprofit offers educational resources and support for parents dealing with a child’s addiction. Kim eventually became the CEO to help other parents.
"The parent wants it so bad. They'll do anything. You know, 'Can I fix this?' And then they start realizing that they can't. And then you feel like a failure," he says
Kim learned firsthand you can’t control another person.
"The sad part of it is, what you can do is limited. And so what can you do? Well, I'm never going to stop loving my sons. And when they're ready for help, I'm there for them," he says.
David says he knew his son would get to this point. He just thought Taylor would be older. “Seriously, I did."
On his kitchen island, you’ll usually find David's Bible open with highlighted passages and notes in the margins. It's how he copes, compartmentalizing and through his strong faith and "God's healing miracles, strength and love."
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.
“There’s no communication,” David says, thinking it isn’t good news. He doesn’t let Taylor in on his suspicions.
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.”
Bart Pfankuch
Since his kidneys aren't working properly, Taylor needs dialysis to rid his blood of waste and extra fluid that builds up.
He's wheeled out of the room in his bed.
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.
"There's not much difference between the two. It's just a choice of what we decide to put in our bodies," she says.
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?"
There are no federally set guidelines for considering potential transplant candidates and it varies by transplant center. Some will not accept patients who are less than six months sober. A patient rejected by one hospital might be accepted by another. David’s not giving up and contacts a friend at another facility.
He decides not to tell his son the bad news yet. He doesn’t want Taylor to give up.
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.
So far he’s been sober as long as he’s been hospitalized: three months and 17 days.
In early June, he’s well enough to come home and live in the Black Hills with David, who becomes his caretaker. “I don't exactly enjoy cleaning up poop for an hour, but there's no other option, so I just do it.” At 72, he didn’t think he’d be taking care of his 35-year-old son. “I thought maybe the other way around.”
David doesn’t think Taylor’s drinking, but he’s not completely following doctor’s orders either.
On a July afternoon, Taylor and David decide to go fishing. It’s been years since Taylor fly fished, something his dad does weekly.
Taylor drives his dad’s Honda SUV to the edge of the pond on David’s property. He still can’t walk unassisted.
On his passenger seat is his bill from Nebraska Medical Center. The total for his four-week stay: $219,980. Taylor only has to cover his Medicaid copay of $50.
He finds it funny. “It’s pretty cool because they were like money grabbers.”
Nebraska Medical Center discounted the bill by more than half, with South Dakota Medicaid paying $97,000.
Taylor’s tired today. Against his father’s advice, Taylor spends the night in his car in nearby Deadwood, South Dakota, after hanging out with friends. “I think he thinks I drank last night, but I did not.”
David’s ready to fish. Taylor needs to eat.
He grabs a take-out bag stacked on top of the car’s backseat and digs into leftover shrimp fettuccine Alfredo from the night before. “Oh God, this smells so good.”
It’s been sitting in his car since dinner and Alfredo isn’t on his low sodium doctor-prescribed diet, which he says he’s been following. “Except for this.” Pointing to the creamy pasta. “I don’t give a (expletive).”
Taylor won’t say the word but when asked if he’s an alcoholic, he nods yes. It’s something he has yet to acknowledge to his dad, even after all these years. Taylor has struggled throughout his life to take accountability.
David focuses on tying a fly to his line, hoping to catch three large brown trout that have been eating smaller fish.
Taylor leans his head back in the green camping chair and closes his eyes. “Honestly, this is so nice.” A clear fishing pond, with the Black Hills forest in the background is pretty serene.
Taylor loves the outdoors. He floods his Instagram with nature landscapes sprinkled in with a few foodie pics.
While Taylor relaxes, David continues to fish, casting back and forth, back and forth. “I think my goal for Taylor has changed,” he says, quietly enough for Taylor not to hear.
Earlier this year, David hoped Taylor would get healthy and back to being a functional adult. “That seems to be far off, right now. Like way far off.”
Taylor starts to fly fish, but he’s a few inches short of reaching the water, so all he catches are weeds. Taylor has a goal too: “Take care of him,” he says, pointing to David.
Dark clouds start rolling in accompanied by thunder.
“Let’s get out of here before we get fried,” David says
“I second that,” Taylor replies, a small sign that he still wants to live.
Wearing his hospital socks, he struggles to get out of the camping chair and into the car. His old sweatpants fall down, showing his diaper.
Bart Pfankuch
“I lost quite a bit of dignity in the hospital.” Being poked, naked, using a bed pan, Taylor’s willing to share it all for one reason.
“If it could help save one person, that’s enough, right?”
'I have not been drinking a drop'
Three days later, Taylor travels 45 minutes to Spearfish, South Dakota, to get dialysis but changes his mind. He 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, trying to negotiate them down. “Not even $50,” he texts. “$10” two hours later. 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.
While he speaks coherently, Taylor’s not always living in reality. He hangs around Walmart, saying he’s looking for a job. He admittedly misses some dialysis appointments but isn’t worried. Even though he can barely take two steps from his wheelchair, he buys hiking boots off of Facebook Marketplace.
Lawrence County Sheriff's Deputy Megan Merwin met Taylor during one of his ambulance calls. He's the youngest cirrhosis patient she's met in her decade in law enforcement. Off-duty they became friends.
"I think he knew that he was nearing the end of his life," she says. "He seemed to be doing as much as he could in the little bit of time that he had left."
That includes fishing. Megan takes Taylor to Orman Dam near Belle Fourche, South Dakota, multiple times to catch catfish.
On Thursday evening, July 25, Taylor’s on a mission and mad. He wants a ride to Belle Fourche, 18 minutes north. “Spearfish sucks. I get the cops called on me every day for no reason.”
There’s usually a reason. Emergency services are called sometimes by strangers, many times by Taylor himself. One time he called for an ambulance because he needed help sitting up in the motel bed.
Taylor maintains he's sober. "I have not been drinking a drop."
His dad arranges for a hospice bed, if he’s willing to go. “I'm not in bad health. I just want to get out of here.” Denial is a strong demon.
Taylor never makes it to Belle Fourche.
The next morning, he's found unresponsive and rushed to Monument Health Spearfish Hospital.
Taylor never wakes up.
“He’s finally at peace,” David says.
Places to go for help
If you or someone you love struggles with alcohol addiction, here are some places to go for help:
- SAMHSA’s National Helpline is a free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders. 1-800-662-HELP (4357)
• Alcoholics Anonymous (aa.org)
• Parents of Addicted Loved Ones (PAL) support group palgroup.org
Behind the story
Megan Luther is a freelance journalist for South Dakota News Watch, based in Mitchell, South Dakota. She has been in recovery for four years. Luther stays at a cabin next to David Nielsen in the Black Hills and started speaking with him and Taylor Nielsen earlier this year about sharing his story. She traveled to Omaha, Nebraska, and spent time in Taylor’s hospital room. She was with the family when they received the news that Taylor did not meet the criteria to become a transplant candidate. She also traveled to Rapid City to visit Taylor in the hospital and Lead to join David and Taylor on their fishing trip. Over several months, she was in mostly constant contact with David and Taylor through phone calls and texts including during weekends and nights. Luther spoke with Taylor hours before he was found unconscious in Spearfish. She conducted additional interviews with medical personnel, nationwide experts and other sources as well as Taylor's friends to fact-check each interview. Freelance journalist Cody Winchester from Spearfish, South Dakota, requested data from the United Network for Organ Sharing Data (UNOS) for the period October 1987-June 2024. It included several data sets with anonymized details on organ transplants in the United States. The data were provided by the UNOS as the contractor for the Organ Procurement and Transplantation Network. The interpretation and reporting of these data are the responsibility of Winchester and in no way should be seen as an official policy of or interpretation by the OPTN or the U.S. Government. Winchester analyzed hundreds of thousands of records for this report and contacted UNOS several times to confirm his findings. South Dakota News Watch CEO Carson Walker provided editorial and ethical guidance.
References
- Taylor Nielsen and his father, David Nielsen, were interviewed several times, together and separately, over the past five months, starting on March 27, 2024. Taylor's last interview was the night before he died.
- Alcohol-associated liver disease death data, CDC Wonder.
- Leading cause of death in 30-39-year-olds, 2018-2022, South Dakota Department of Health Vital Statistics 2022. The oldest electronic data go back to 1960.
- Adam Bradsky, Taylor's friend, interviewed July 15 and 31, 2024.
- Inflation and seasonally adjusted liquor store sales data provided by Dakota Institute, a nonprofit economic research organization.
- Stephen Tamang, board-certified addiction medicine physician at Monument Health Rapid City Hospital, interviewed June 3, 2024.
- Tory Long interviewed on July 20 and 31, 2024.
- Shivani R, Goldsmith RJ, Anthenelli RM. Alcoholism and Psychiatric Disorders: Diagnostic Challenges. Alcohol Res Health. 2002;26(2):90–8. PMCID: PMC6683829.
- Kim Humphrey, CEO of Parents of Addicted Loved Ones (PAL) interviewed on July 17 and 31, 2024.
- South Dakota News Watch analysis of United Network for Organ Sharing Data (UNOS) for the period January 1994-June 2024. Click here for more details on how we crunched the numbers.
- Health Resources & Services Administration, Organ Donation and Transplantation Data, Jan. 1, 2018-Sept. 30, 2023.
- Code of Federal Regulations for Transplant Program Process Requirements.
- Organ Procurement and Transplantation Network, General Considerations in Assessment for Transplant Candidacy.
- Jenn Jones, founder of Sober Livers, interviewed on July 16, 2024.
- Nebraska Medical Center invoice.
Editor's note: As part of its ethics policy requiring South Dakota News Watch to disclose potential conflicts of interest, Monument Health Rapid City Hospital's public relations manager, Stephany Chalberg, also serves on its board of directors.
This story was produced by South Dakota News Watch, an independent, nonprofit news organization. Read more in-depth stories at sdnewswatch.org and sign up for an email every few days to get stories as soon as they're published. Contact freelance journalist Megan Luther at megan.luther@sdnewswatch.org. Freelance journalist Cody Winchester contributed to this report.
