Lem Butler, on top of his coffee game, struggled with a fatal disease. But a friend came through.
BY LEVI ROGERS
BARISTA MAGAZINE ONLINE
Photos courtesy of Lem Butler and Nathanael May except where noted
In 2016, Black and White Coffee co-founder Lem Butler won the U.S. Barista Championship. A previous Counter Culture Coffee barista and trainer, Lem was a five-time U.S. Southeast Regional Barista Champion who had been competing in barista championships since 2005. After taking the crown in 2016 in Atlanta, he would go on to represent the United States in the World Barista Championship in Dublin, Ireland.
He was at the pinnacle of his career and would spend the next year traveling the world—Panama, Brazil, Japan, Ethiopia, China, and South Korea. The man was on top. And yet, unbeknownst to all but his wife and mom, Lem was silently battling a fatal disease.
A Frightening Diagnosis: PKD
In 2013, while accompanying his pregnant wife on a doctor’s visit, Lem decided to get his blood pressure taken on a whim. It was abnormally high.
After some tests, doctors soon diagnosed him with hereditary polycystic kidney disease, a disorder in which cysts grow in your kidneys and eventually cause them to fail. There are two versions of PKD: adult onset and child onset. There is no cure, but there are drugs that will prolong your kidneys. “Let’s show some respect for the disease,” Lem says, “because it’s a beast.”
Lem was well aware of PKD; his mom was diagnosed with it in 2005. She spent three years on dialysis, a painful process that “destroys you physically, mentally, and spiritually,” says Lem. Dialysis takes the blood out of your body, filters it, cools it, and reinserts it. His mom finally received a kidney transplant in 2009, otherwise she would not be here today. But Lem ignored his own PKD diagnosis even after his 2016 win. “I shoved it down deep,” he says. “Ignored it.”
Things Get Serious for Lem
In 2018, that all changed. Lem woke up one morning with terrible heartburn and swollen hands. His wife, who worked in the medical field, told him, “You need to go to urgent care.”
By the time Lem walked into urgent care, he could hardly stand. “I felt like I was in a vice grip that was getting tighter and tighter,” Lem says; he credits his wife with saving his life.
One of the cysts in Lem’s kidney had grown to the size of a softball and ruptured, flooding his system with bacteria. As a result, his right lung had partially collapsed. He had congenital heart failure: bacterial infection of the aortic valve. Even in explaining his battle with the disease, the U.S. Barista Champion couldn’t help but use coffee metaphors. “Cysts are like holes in a coffee filter. They’re holding everything back and then one day they burst,” he says.
In 2019 Butler had heart surgery to replace his aortic valve and prevent an “endgame heart attack,” as he described it. Spooked during the 2020 pandemic because of all his health problems, “I spent the next three or four months isolated inside,” Lem said.
He decided to take his health into his own hands and began to cut out red meat, improve exercise, and move toward a better work/life balance.
It was too late.
In 2022, Lem was approaching end-stage kidney disease (ESKD), or renal failure, meaning nothing he could do would help his kidneys recover—the remaining options were either the painful process of dialysis or an organ transplant. As a business owner, he didn’t have time for the three to four hours multiple times a week that dialysis would take and, it’s likely it would have calcified the aortic valve he had already replaced. Out of options, Lem Butler put himself on kidney transplant waiting lists. The wait at Duke was five to seven years. John Hopkins was three to five. There was little hope. “At the rate my kidneys were declining, I wasn’t going to make it,” Lem says. “I had to make peace with it.”
And that might have been the end, if it weren’t for two people at the Specialty Coffee Expo in Boston in 2022.
Stay tuned for part two of this article, coming soon to Barista Magazine Online.
ABOUT THE AUTHOR
Levi Rogers is a writer, former coffee roaster, and dad. He’s the author of Utah! A Novel and has a blog, Levi’s Lost Thoughts.
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