Laney Culpepper: A Kidney Transplant Recipient Living the Active Healthy Life of a Six-Year-Old

There is no denying the energy and positivity that radiates from Laney Culpepper. At six years old, she has already faced more challenging health issues than most adults, but it hasn’t dampened her spirit in the least.

“My name is Laney Jane Culpepper and I had a kidney transplant,” she boasts. “My other one wasn’t working.” She says plainly and simply and with a smile on her face. In the next second she is talking about something else.

At three, Laney was diagnosed with Membranoproliferative Glomerulonephritis (MPGN). A serious, rare and undetected genetic kidney disorder. Her diagnosis came by chance. One regular day, her mother’s intuition led them to the pediatrician and their lives changed in a flash.

“It was two or three weeks after her third birthday. She was at daycare and they noticed she wasn’t really acting right. She was acting very tired and walking like her feet were hurting or something,” explains her mother Zoey Culpepper. “We went to the pediatrician and nothing was just jumping out, so I asked her to do lab work. That same day we found she had end-stage renal disease.”

End-stage renal disease is when the loss of kidney function is advanced. Dialysis or kidney transplant is needed to stay alive.

Laney had gone from an active three-year-old to a toddler facing a life-threatening disease in a matter of hours. “The doctor told us to go straight to the hospital. We went to Children’s that night and she had blood transfusions, they started dialysis and placed the catheter in her neck, “said Zoey. For nearly the next two years, Laney would be hooked up to the artificial kidney three or more days a week.

MPGN damages kidney function when immune system attacks the glomeruli, called the tiny filtering units of the kidney where blood is cleaned. This leads to kidney failure and need for lifelong dialysis.

“MPGN causes kidney damage usually in children, although it can occur at any age” explains Anthony Sebastian, MD,

Laney’s surgeon and the Director and Chief of the Oklahoma Transplant Center at Oklahoma Children’s Hospital. “It often starts in older children or teenagers, sometimes after an infection. It is caused by problems with the immune system, which normally protects the body against disease and infection.”

Some children do not have any symptoms or signs. Lab tests can detect blood or proteins in the urine that may be an indication. Other symptoms like decreased urination, swelling or puffiness in different parts of the body such as the eyes, legs or feet and or swelling in the abdomen may sometimes appear.

In Laney’s case, it was her “ walking like a little old lady” and her loss of appetite that got her mother’s attention. By that time, her kidneys were ravaged by the disease and a transplant was the only option.

Laney’s uncle, her dad’s brother, was deemed a match and became her donor in February of 2019 in an historic surgery at Oklahoma Children’s Hospital. At four years old, her 30 year old uncle’s kidney was a bit large for her tiny frame, but made to work. Laney’s surgery was the first robot-assisted kidney transplant surgery in Oklahoma.

“The amazing part of this organ donation operation was that Laney’s donor kidney was taken from her uncle Justin using a robot,” explained Dr. Sebastian. “The robotic surgery was performed with Dr. Sanjay Patel, a Urologist at OU Medical Center and very simple and safe. “

Thanks to the efforts of Laney’s family and many other transplant families, in July 2019 Oklahoma Governor Kevin Stitt signed a law protecting healthy organ donors from losing the health insurance or being denied health coverage after organ donation. Laney’s family, including her donor uncle, and Dr. Sebastian were present for the signing.

Smart and very witty Laney has named her new kidney ‘Rocket Blaster’ because as she says “…it blasts all the pee out of me like a rocket!”

Two years post-surgery she has regular visits with Dr. Sebastian, but mostly it’s a regular six-year-old’s life of school and sometimes fighting with her sister. “Dr Sebastian is really nice and really funny. His mustache looks like a caterpillar. Doctors don’t really have superpowers, they’re just really smart.”

Laney’s focus now is staying healthy. She has some very specific ideas on how to do that, “Take medicine, eat fruits and vegetables and get lots of rest.”

“Carrots are good for your eyes. Chocolate milk isn’t that healthy. The only two things I can’t have are pomegranate and grapefruit. I can have pizza!” she rattles off. The next second Laney Jane is ready to show off how she can count by 10s – a good thing because she’s going to need those 10s to check those milestone birthdays in her very bright and healthy future.