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One evening at summer camp, Lexi Paris experienced symptoms of a supraventricular tachycardia (SVT) episode, a condition she was diagnosed with five years earlier that causes an irregular heartbeat. Usually, an SVT episode can be stopped, but this time Lexi’s heart continued to beat at 160 beats per minute for over 14 hours, which is twice the normal heart rate for her age. After Lexi’s mom, Renae, picked her up at camp to take her to the doctor, what they thought was a normal SVT episode ended up being kidney failure.
Renae took Lexi to the closest hospital; however, her critical condition required the care of the pediatric specialists at Children’s Hospital Colorado. The specialists at Children’s Colorado performed a biopsy to check her kidney function, but the biopsy was inconclusive due to atrophy (shrinkage) of the kidneys. The cause of Lexi's kidney failure was unknown, and the only option was dialysis and eventually a kidney transplant.
Lexi’s family was shocked because they hadn’t known Lexi was sick. Renae noticed that Lexi was a bit tired and pale, but had chalked it up to teenage behavior. “She was a normal 14-year-old – she would stay up too late and get up too early for school,” Renae said. But looking back, she recalls that Lexi was having trouble remembering dance routines from tap class and was struggling a bit in school.
“When kidneys don’t work, toxins and body fluids are not removed or cleaned properly, which affects the brain and can cause cloudy thinking. It can also cause anemia and high blood pressure. Lexi experienced all of these leading up to her diagnosis,” said Dr. Wachs, Lexi's transplant surgeon.
Learn more about how kidneys work.
After three days in the Intensive Care Unit, Lexi was put on dialysis (an artificial kidney machine that removes waste from the blood). Dr. Ford in the Kidney Center recommended that the family get trained to give Lexi dialysis at home – and after one month and a lot of education, the family left Children’s Colorado in Aurora and returned home to Colorado Springs.
“We were very well-prepared after training,” said Renae, who could call the Kidney Center and ask for help if something went wrong with the dialysis machine. “Without the support from Children’s Colorado, she wouldn’t be alive. Everyone was very helpful. They were always saying, ‘you can do this.’ We felt a lot of support.”
Months went by as Lexi and her family waited for a kidney transplant. Lexi completed school online and spent her free time drawing and painting. At night, she spent 10 hours on dialysis while she slept. Meanwhile, Renae’s heart skipped each time she saw a call from Children’s Colorado on her phone: “Every call you get from the hospital, you think it might be a kidney.”
A few months later, Renae was tested as a potential kidney donor for her daughter and found out she was a match. “I felt awesome…but still fearful,” Renae said. “I thought – what if it doesn’t work? What if something happens? [But] you want your child to feel better and have longevity. So, you just do it.”
A few months later, Renae moved forward with the process of donating her kidney to her daughter.
Kidneys are the most commonly donated organ by live donors. A living donor is when a living person donates an organ to another person, like a mother who gives a kidney to her daughter. Donors who give a kidney to a person in need usually live normal, healthy lives with their remaining kidney.
Because Children’s Colorado partners with University of Colorado Hospital (UCH) for live donor transplants, Renae’s procedure took place at the adult hospital while Lexi was under the care of Dr. Wachs at Children’s Colorado. Once the specialists removed Renae’s kidney, it was brought to Children’s Colorado (UCH’s “neighbor” hospital on Anschutz Medical Campus) and transplanted into Lexi.
The family received support from the Children’s Organ Transplant Association (COTA). Volunteers held fundraisers, posted to Facebook and a website on the family’s behalf. The association collected donations to help the family pay for prescription co-pays, transportation, housing and food during their stay. “They were helpful, supportive and helped take the load off,” Renae said. “We were overwhelmed at the generosity and love we experienced through donations and encouraging comments. The funds raised would continue to help with medical and prescription costs until the funds run out. ”
After the transplant, life was like a rollercoaster. Lexi’s new kidney wasn’t working well and she experienced a rejection of the transplant kidney. She was put on high doses of steroids and had a tube placed into the peritoneal cavity to drain fluid that had collected around the new kidney. Once Lexi and Renae got home, life slowly resumed back to normal.
One year later, Lexi is adjusting to life after the transplant. She visits Children’s Colorado and her pediatrician regularly for blood draws and checkups. Lexi and her family traveled to Kauai, Hawaii, courtesy of the Make-a-Wish Foundation. She is thriving academically and continues to draw and paint. Physically, she is doing well and is slowly adapting to life as a high school sophomore.
When she thinks about the future, Lexi hopes to become a pediatrician. Renae proudly shares that Lexi is an expert on her condition. She keeps track of the names, spelling and purpose of her medication better than her mom, for which Renae is grateful. She always answers questions from friends and family and willingly shares her experience. This experience has given her the ability to relate to future patients in her dream job and say, “I do understand what you’re going through.”