A Teen’s Life-Changing Diagnosis: ANCA Vasculitis, Dialysis, and a Kidney Transplant

A few days after Reggie’s routine checkup, her family got a call they never expected.

“The lab results showed that Reggie’s kidneys were stressed,” Leah, Reggie’s mom, said. “At first, her doctor thought she might be dehydrated. They asked her to drink more water and come back in a week to repeat the labs.”

But the next set of results came back worse. Reggie went straight to the children’s hospital and was admitted.

“After days of testing, doctors discovered that Reggie wasn’t just dealing with kidney disease,” said Leah. “She had ANCA vasculitis, a rare autoimmune disease that causes blood vessel inflammation.”

The condition had already damaged Reggie’s kidneys and caused bleeding in her lungs.

“It was scary, but it also went by so fast. I feel like I’m still processing what happened,” Reggie said. “My mom and dad were so great, though. The nurses and doctors, too.” 

Doctors worked quickly to try to save Reggie’s kidneys, but within a few weeks, they failed.

Learn more about kidney disease in adolescents. 

Reggie did hemodialysis for a month while she and her parents trained for peritoneal dialysis (PD), a type of home dialysis. 

“Training for PD was scary,” David, Reggie’s dad, said. “You have to do everything exactly right, because your child’s life depends on it.”

As Reggie’s bedroom filled with dialysis supplies and medical equipment, reality set in. But that wasn’t the hardest part. 

“2024 was going to be my year, but nothing happened the way it was supposed to,” Reggie said. “I wanted to improve in competitive dancing. I could dance on dialysis, but not as much. My friends and I were excited to start junior high together, but I couldn’t go on the first day. I missed out on a lot.”

Luckily, Reggie had a great support group to help her through it. 

“I was very open with my friends about what I was going through. I know some people hide it, but it’s easier when they know,” said Reggie. “If I couldn’t eat something or had to sit out because I didn’t feel good, they knew why.” 

Slowly but surely, they found a routine.

Take our quiz to learn if home dialysis is right for you or your child. 

As a year of home dialysis approached, Reggie and her family began to struggle with the weight of treatment. 

But neither of her parents could donate a kidney due to medical reasons. 

“We started the @resilient.reggie channel to share her story on social media,” Leah said. “We hoped it would reach the right person.”

And it did!

“A woman saw it and felt called to become Reggie’s living kidney donor,” Leah said. “Our team let us know Reggie had a match with someone very persistent in being the one to donate. They decided to go with her. We were thrilled.”

But the road to transplant wasn’t easy. The scheduled surgery was canceled at the last minute because an organ donor passed away. The medical team needed to move fast to ensure their gift of life would not be lost. Reggie’s surgery would have to wait.

“It was heartbreaking to see Reggie get upset,” David said. “But we talked about how those organs were saving someone else’s life. That helped us get through it.”

Three weeks later, they got another call. This time, it was Reggie’s turn.

“I was so scared going into surgery, but it was actually really easy compared to everything else,” Reggie said. “The anti-rejection medications are hard, and I’m nervous about rejection, but I feel better and have so much more energy.”

Reggie’s donor also recovered well. They’ve since had the honor of having her over to thank her in person. 

“We are forever grateful to Reggie’s donor,” David said. “We just want them to know how much she means to our family.”

Learn more about living kidney donation from real donors.

Reggie’s parents coped in different ways. Leah researched everything she could. David focused on staying positive and trusting the medical team. Some days were harder than others, but they leaned on each other.

One thing that made a big difference was connecting with other parents.

“Talking to other moms whose kids were on dialysis or post-transplant helped so much,” Leah said. “It helped me see that there was light at the end of the tunnel.”

They were also grateful for Reggie’s care team.

“It was a hard situation, but they saved her and helped us through it,” David said. “We’ll always be thankful for that.”

Join NKF’s online community for parents or children with kidney disease.

Reggie knows how hard this journey can be. Her advice to other kids and families facing kidney disease is simple but powerful.

“Stay positive. I know that it is really hard sometimes. I know dialysis is challenging, but the machine kept me alive until I could get a transplant,” she said. “Try to remember you’re loved. You’re awesome. And you’re going to make it.”

Now, Reggie is back doing what she loves–dancing, spending time with friends, going to school, and enjoying life with her new transplant.

Learn more about life after transplant.

No family should have to face kidney disease alone. That’s why NKF offers free support and trusted education.

• NKF Peers: Connect one-on-one with a trained mentor who understands what it is like to care for someone with kidney disease.
• NKF Cares: Call 855.653.2273 toll-free to get your questions answered by a professional.
• Kidney Walk: Meet other families in your area affected by kidney disease while helping raise funds for a better future in kidney care.