When Derek Hudson was 15, his Boy Scout troop embarked on a retreat to Chief Logan State Park. Hudson went to sleep at 140 pounds; he woke up weighing a little more than 200.
His Scout mates could only stare. He got stung by something, someone guessed. Whatever it was, it shook them up for a weekend — but it signaled something far worse for Hudson.
After an initial misdiagnosis, doctors identified Hudson’s malady — focal segmental glomerulosclerosis, a very rare kidney disease that affects only tens of thousands of people. For comparison’s sake, multiple sclerosis affects about 2.8 million people — less than 1% of the world’s population.
FSGS, as Hudson’s disease is known, is terminal.
Hudson’s journey has been just as about as difficult as learning his fate. During a recent interview with the Gazette-Mail, he was preparing to face his 52nd surgery under anesthesia, this one to repair a 22-year-old synthetic graft. Doctors had used it years ago to administer dialysis and the experimental treatments which have kept him alive.
“It’ll be just another Wednesday afternoon for me,” said Hudson, a matter-of-fact person with a ZZ Top look. His beard is prominent, with a gray patch in the center. And he wears sunglasses to soften the disease’s affects to his sensitive eyes. The disease has required two kidney transplants already.
So how long does he have?
“It’s a running joke,” he says. “Each time, they tell me six months. In reality the honest answer is whenever the disease comes. It attacks so fast. You walk steady, and boom, you’re in a firefight, like in a war.”
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Hudson, 43, is a lifelong member of Bream Memorial Presbyterian Church, a West Side landmark. He runs the church’s outreach program for the homeless. About 15 social service agencies help.
He can’t work full time and isn’t paid for the three hours he puts in each day at Bream. The disease keeps him in constant pain and fatigue, but no one would ever know it. He can’t take painkillers because they would affect his already damaged kidneys.
“My doctors tell me, ‘Deal with it,’” he said. “About the best I can do is a hot jacuzzi bath.”
Some people around the Kanawha Valley may remember Hudson’s grandfather, Johnny Barker. Known as “the Voice of Laidley Field,” Barker spent decades on the stadium’s public address system, calling football games, majorette festivals and other events. His cheerful demeanor served as an example for many, including his grandson.
Barker died in 2018.
After blowing off his most recent surgery as nothing major, Hudson confided that, “My health has been struggling ... and he was always the one I turned to in times like these.”
Hudson has experienced many “times like these.” It began with treatments at Charleston Area Medical Center Women & Children’s Hospital, to flush the excess fluid his kidneys couldn’t.
“My 11th-grade year, I spent every weekend at Women & Children’s Hospital,” he said. “That was my youth, if you can call it that. You grow up fast.”
During the week attending class at Capital High, his body became increasingly bloated, a semi-repetition of that horrible Boy Scout weekend. It also made him the potential brunt of jokes.
“By the end of the week, my legs were like tree trunks,” he said. “I couldn’t fit into my shoes. My face was the size of a bowling ball. But I had a lot of good friends who wouldn’t let me get made fun of.”
The drainage treatments and blood transfusions carried him for 5 1/2 years. Then it was onto dialysis, a treatment that allowed him “to take a breath” with cleansed blood. Then it, too, turned on him, causing a wide variety of complications. He was attending graduate school.
Eventually, in 2002, it became time for a kidney transplant, at Georgetown University in Washington, D.C. Doctors initially thought the disease had abated enough to proceed with the surgery. Instead, it began devouring the new kidney as soon as it was placed inside him.
Hudson said nephrologists wanted to remove the organ. Hudson and his doctors, including Dr. Joyce Gonin, a South Africa native and kidney specialist, opted to treat the disease in an attempt to save the kidney.
“This lady says, for the rest of your life, you will never have to make an appointment with me and I will keep you alive as long as possible,” Hudson recalled. “I will be the only doctor you will ever need for the rest of your life.”
Hudson said Gonin has been true to her word. He has remained in constant contact with her over the years, even flying to Gonin’s D.C. practice to undergo plasmapheresis, a process in which plasma is separated from the blood and replaced. This enables Gonin’s treatments to work.
“[Gonin] kept that [first] kidney alive from 2002 to 2008, which is a miracle in its own right,” Hudson said.
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Hudson owns two degrees from the University of Charleston. It was there that he met fraternity brother Nick Richards.
By 2008, the first kidney he received had begun to fail. In stepped Richards, who proved to be a transplant match. He wanted to donate, despite having heard horror stories about Hudson’s first procedure.
“He’s a pretty amazing human being, if you ask me,” Hudson said, wiping tears. “Knowing that the risk is it’s not going to work. He knew it all. He didn’t care. He’s a good guy. He told me, ‘You’re somebody who ought to be here.’”
This time around, with Gonin’s guidance, the disease had been stalled long enough for the kidney to take root. Fifteen years later, it is still working.
Hudson comes from tough stock. His mother is a breast cancer survivor. His father worked for the city of Charleston and survived a gas explosion that burned much of his body. His mother keeps a running log of all his surgeries.
Hudson’s plight has been physical and psychological.
“When I was young, I was very bitter and angry,” he said. “After a while, you just accept it. What are you going to do about it? What are you going to do with your life?”
He had never been able to put his education to work. For one, he couldn’t handle the strain. What’s more, he might have to drop everything for an emergency treatment. And working for pay would negate the benefits he receives, which include Medicaid, Medicare and city insurance through his father’s previous employment.
“When you’re dying, they give you every insurance you can get,” Hudson said. “I’m blessed to have a nice family who supports me. It’s very rewarding to be able to get up and go do a job.”
Before COVID-19, Hudson’s church had been operating a food pantry. He had the idea to expand the program. He and the staff provide clothing, access to washers and dryers, showers and small snack bags. Much of the work he does online, from his couch. He spends maybe three hours a day at the building.
“I’ve accepted death is near, and I just don’t care,” he said. “I just want to do it. Before, I was only worried about sustaining and being as healthy as I could be. It was like a switch I flipped.”
He never intended to adopt homelessness as his pet cause. But he needed an outlet, after 11 straight months inside during the pandemic. The task can be stressful, trying to help people who he acknowledges can be difficult to work with. Some have substance abuse problems. Some are domestic violence victims. Some are older, who have a hard time paying utility bills.
“Nowadays, I consider half the homeless population of Charleston my friends,” he said. “Even if they’re not my friends, they’re my kids.”
Hudson said he knows what he’s up against and is no longer afraid or bitter, as he used to be.
“I really, really, really enjoy getting older,” he said.
