HOW ONE PEDIATRIC KIDNEY PATIENT DANCES THROUGH IT ALL
By Deborah Pelaez, aakpRENALIFE Independent Writer
Genevieve is 16 years old and loves to dance. Dancing has been a constant passion in her life since she was three years old. Despite her diagnosis of end-stage renal disease, being on dialysis, and experiencing a kidney transplant loss, she has always found a way to pursue her passion for dance. Her family, Carter (mom), Chad (dad), and Olivia (older sister) say Genevieve is a positive, optimistic, and determined young lady and is always dreaming about her next performance or competition. No matter what she is going through, she pushes through and does her best. Her favorite saying is, “I got this.”
The Symptoms
Genevieve began experiencing health issues in the summer of 2020 at age 14, when she was in the Richmond Ballet’s summer intensive dance program and taking classes at her local studio, Prestige. She auditioned for a seat on the competition team for her dance studio and made it but tore her hip flexor. After attending physical therapy for weeks, her hip flexor was not healing as fast as it should have.
That fall season, she was still not fully healed from the injury and started feeling sluggish. She was rehearsing seven days a week, but this schedule was not new to her—she had danced after school and on the weekends for as long as she could remember. While visiting her pediatrician with her mom, they discovered that Genevieve was extremely low in calcium, vitamin D, and iron. Additionally, the doctor said her creatinine level was slightly elevated and should be monitored.
Genevieve continued to experience extreme fatigue and was becoming very thin. By December, her menstrual cycle had started, but it was not ending. Upon visiting the gynecologist, she was diagnosed with dysfunctional bleeding and prescribed birth control.
Despite these health issues, she continued attending school and dancing. In January 2021, she had her first competition season and did well. However, shortly after, Genevieve began having stomach aches. Eating hurt her stomach, and she often had flatulence. Her stomach was protruding, and Genevieve told her mom that she felt like her cheeks were getting fat. Her mom made an appointment with the gastroenterologist, where they did a blood panel on Genevieve to see what could be causing her stomach issues.
The Diagnosis
On March 24, 2021, the gastroenterologist called Carter at work to inform her that her daughter needed to go to the emergency room as soon as possible. Her blood work revealed that her creatinine level was very elevated. Carter rushed home to get Genevieve, where she was taking a biology test online and insisted her mom wait until she finished her exam. Carter put a few things in the car while she waited for Genevieve to finish, and then they headed to the nearest ER.
At the ER, her creatinine level came in at over 10 mg/dl*, which indicated that there was something wrong with her kidneys. The ER doctors consulted with the pediatric nephrology team at Children’s Hospital of Richmond at VCU and they requested she be transported by ambulance to their care.
In the Children’s Hospital ER, Dr. Lo, the pediatric nephrologist, performed an ultrasound with Carter and Chad present. Dr. Lo told the family she saw small and shiny kidneys—one was covered in cysts. Then, she stopped talking. Finally, she informed them that Genevieve was in complete kidney failure.
Dialysis
Genevieve was admitted to the hospital and told she would need to begin dialysis as soon as possible. However, her hemoglobin level in her blood was too low for dialysis, so she needed to have a blood transfusion first. That afternoon, Genevieve had her first dialysis treatment. She was in the hospital for several days before being released and would now need to travel to the hospital three times per week for hemodialysis.
Despite her new dialysis schedule, Genevieve did not give up dancing. She continued, but within limits. She could no longer dance with a partner due to her catheter, which was her current access for dialysis treatment. She also could not do dancing that would require floor work. But, determined to keep dancing, Genevieve accepted these new limitations with a positive outlook. Her doctors encouraged her to keep dancing and were inspired by her optimistic attitude and desire to pursue her passion.
During this time, Genevieve’s family was learning more about kidney failure and kidney transplantation, and Genevieve was placed on the kidney transplant list. Carter decided to be tested to be Genevieve’s living kidney donor and was found to be a good match. However, after a medical panel review, the transplant was denied because it was deemed not a good long-term fit for Genevieve due to antibodies that her body had developed. The doctors feared the kidney would be rejected within five years.
Transplantation
News came on August 11, 2021: the family received a call that there was a kidney match from a deceased donor. On August 12, 2021, Genevieve had transplant surgery and did amazing. About four weeks later, the family began to learn about the deceased donor. The doctors were concerned that the donor had lived in a third-world country and contracted parasites at one point. Genevieve had to
take additional medication due to this news. However, her new kidney was working great and affectionately named “Billy Bean.” Genevieve explained this is half because of Billy Jean and half because of jellybeans.
Genevieve and her family were looking forward to a life free of dialysis. They toured a new school, where they were hoping Genevieve could attend in person. Genevieve tried out for The Nutcracker Sweet, and landed the role of Snow Queen. This was a partnering role, a type of role that she had been restricted from when she was on dialysis.
However, on September 18, 2021, Genevieve fell ill and began experiencing extreme abdominal pain. She was rushed into emergency surgery. Sadly, she lost her kidney, “Billy Bean.” Genevieve and the family were devastated.
A biopsy was performed on the deceased kidney, as well as further genetic testing on Genevieve after the surgery, where it was discovered that Genevieve had Factor V Leiden, a genetic abnormality that increases the risk for blood clots. She also had warm antibodies due to the blood transfusion earlier that year. These were important learnings for both dialysis treatment and a future kidney transplant, as special precautions, medications, and planning need to be in place to ensure success.
Dialysis Again
Genevieve had a new catheter put in and, once again, started hemodialysis. She also continued dancing and was determined to proceed with her role in The Nutcracker Sweet. However, she would have to have a more limited role with no partnering but would still perform. Genevieve did not miss a practice, and her medical team supported and encouraged her enthusiasm for dance.
In December 2021, Genevieve performed in The Nutcracker Sweet as lead Mirliton, a maid, and a snowflake. Carter said she “rocked it.” Seventeen members of her healthcare team from Children’s Hospital of Richmond at VCU came to watch the performance. Carter says Genevieve has been an inspiration to everyone around her with her positive attitude and passion for dance. “Her doctors have had to rethink how they do things along the way—they’ve learned how to better treat an athletic pediatric patient,” Carter said.
Second Transplant Surgery and the Future
This past spring, Genevieve was relisted on the kidney transplant waiting list. She also received IV medications to help increase her chances of finding a good organ match and did training on nocturnal peritoneal dialysis (PD) to be able to do dialysis at night while she sleeps, allowing her more time for school and dance during the day. Carter and Genevieve also began lab work for the National Kidney Registry “swap” database.
Then, on May 18, 2022, incredible news came at 1 a.m. during a phone call from the hospital team: a deceased donor kidney was available and was a match for Genevieve. She would need to be at the hospital early the next morning to allow her to finish her dialysis that night before surgery. On the evening of May 18, 2022, Genevieve received a new kidney. Carter reports that Genevieve is doing extremely well, and her doctors are very pleased with her progress. “Genevieve is doing amazing, and her new kidney, also known as Garbonzo Filepe Riñon, is very happy and doing awesome!” Carter said.
Now a month post-surgery, Genevieve is looking forward to dancing at her studio, preparing for auditions for the upcoming dance season this August, and gearing up for this year’s The Nutcracker Sweet performance. She hopes to land the role of Snow Queen.
For Genevieve, the future looks bright. “I want to dance through everything. I want to perform and be able to compete next year. I want to be able to travel and live life,” she said. Genevieve has her driver’s permit and hopes to get her license soon. The family is looking forward to taking a family trip to the beach this summer.
This article was originally published in aakpRENALIFE, July/August 2022.
