Kidney Disease at 13: Finding Hope and Inspiring Others on TikTok

At just thirteen, Chandler's life took a turn most kids can't imagine. He was diagnosed with kidney disease. Instead of letting this challenge define him, Chandler turned his story into something powerful. Today, he's a TikTok influencer called Chandler the Kidney Guy. He educates others about kidney disease and dialysis. His journey shows that strength, community, and hope can help you overcome anything, no matter how tough life gets.

Before May 2017, Chandler was an energetic, healthy teenager. Then came odd symptoms. His legs swelled up. He had strange eye pain and flu-like symptoms for a week.

"Two months later, my legs and feet swelled up again. My mom took me to the ER. They said it was just puberty," Chandler said. "She didn't like that answer and took me to my primary care doctor for a more thorough checkup."

What Chandler's doctor said changed everything–these were likely symptoms of worsening kidney function. He went to a kidney doctor who confirmed his kidneys weren't working properly.

"I was diagnosed with nephrotic syndrome, a childhood kidney condition that usually affects kids between 2 and 9 years old," Chandler said. "That's when I realized my life would never be the same."

Since Chandler was older than the general range for nephrotic syndrome, his doctor sent him for a biopsy to confirm the diagnosis.

"My diagnosis changed to a rare kidney condition called membranoproliferative glomerulonephritis (MPGN). MPGN occurs when the immune system attacks the kidneys' filters. My doctor told my mom I wouldn't live past 18," Chandler said. "She didn't tell me and took me to another hospital for a second opinion."

There, doctors diagnosed Chandler with yet something else–lupus, a different autoimmune disorder. While still life-changing, it didn't carry the same grim prognosis as MPGN. Chandler began taking prednisone, a steroid used to calm the immune system.

"My swollen feet and legs hurt, but the worst part was my swollen face," Chandler said. "Middle school is already tough without health issues. The prednisone made my face puffier. I got bullied because I looked different."

The teasing was hard to handle. "I used to cry after school," Chandler said. "But I kept reminding myself that I was doing this to survive. My mom and sister were always there to lift me up."

Then, his medicine stopped working.

"Every other day, my mom drove me two and a half hours to the hospital to have fluid drained. It was exhausting for my whole family," Chandler said. "My sister was only 8. She missed a lot of time with me and mom."

Doctors tried an infusion treatment that worked for a while, but it eventually failed, too. The next option was chemotherapy.

"It was one of the hardest things I've ever been through," Chandler said. "I needed a wheelchair because I was so swollen. My face broke out, and my hair started falling out. I was in denial about my hair until my barber, a family friend, said we needed to shave it."

As his barber shaved his head, Chandler felt defeated. But his family and medical team kept him going.

"My mom has always taught me to have an outlet. We found activities we enjoyed which helped me forget about the pain," Chandler said. "A strong support system and finding an outlet you love are key to surviving tough times."

Chandler then started Rituximab, a medicine that targets specific immune cells to treat immune diseases and some cancers.

"It worked! After two long years, I finally went into remission," Chandler said. "I felt like everything would be OK."

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While remission gave Chandler a much-needed break, 70% of his kidney function was lost. He was told he’d likely need dialysis or a transplant in the future but decided to focus on the present.

"I was in remission for almost five years. I graduated high school and started college. When COVID-19 happened, I focused on protecting myself," Chandler said. "In 2023, just before my sophomore year, I started throwing up uncontrollably."

Chandler hoped to rule out kidney issues as the cause. He went to his nephrologist, who gave him the news he'd been dreading—his kidneys were failing.

"I knew deep down this day was coming but I never let myself believe it," Chandler said. "I had two options—peritoneal dialysis (PD) or in-center hemodialysis."

Chandler chose PD, a home dialysis option that uses the stomach's lining and a special fluid to filter the blood.

"The waitlist for a kidney transplant in my area is five to eight years," Chandler said. "I didn't want to wait that long, so I also started looking for a living donor."

Unfortunately, his father, cousin, and a family friend were all denied due to various health issues. That's when Chandler's mom suggested making a video.

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Chandler posted a video about his journey and kidney donor search on TikTok.

"It just blew up with over 150,000 views. I was surprised by all the positive messages," Chandler said. "Over 33,000 people followed me. They’re all interested in kidney disease and my dialysis journey."

The response inspired him to do more.

@chandlerthekidneyguy Come spend the day with me as we go to the new children’s hospital#kidneydisease #hospital #childrenshospital #dialysis #spendthedaywithme #disease ♬ luther - Kendrick Lamar & SZA

"What started as a personal search for a donor turned into something bigger," Chandler said. "People started asking questions—how do I manage treatment and stay motivated? They said my videos were helping them. So I continued."

Now, Chandler uses his platform to raise awareness about kidney disease and build community.

But sharing online hasn't always been easy.

"A follower said they went through the donor evaluation process for me. I was so hopeful," Chandler said. "Then I called my living donor team. They said no one had recently signed up or completed it. I asked the person about it, and they blocked me."

That betrayal nearly broke Chandler's resolve.

"I felt like giving up. I was ready to stop treatment, which meant dying," said Chandler. "It was the first time I truly felt like I couldn't go on."

His family once again rallied behind him, giving him the strength to fight another day.

"It's OK to have bad days. It’s OK to feel nothing or cry until there are no tears left. Just don't stay in that emotion forever. If I had let that feeling overwhelm me, I wouldn’t be here today sharing my story. I wouldn’t be able to inspire others not to give up,” said Chandler. “You matter. Your fight is worth it. Don't give up."

Chandler is taking his advice. He will continue to hold on to hope while searching for a living donor.

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