A kidney for Lizzie

Like many other Joliet teens, 15-year-old Lizzie Reyes has experienced a challenging year.

On top of the COVID-19 pandemic and a year of remote learning, Lizzie has battled a rate genetic condition, end-stage kidney failure and two major surgeries, including one kidney transplant – all in the space of nine months.

But she’s now back on track to resume a healthy life, and Lizzie’s mother Stacey Reyes is so thankful to everyone who made that possible.

“Lizzie feels great,” Stacey said. “She is a little tired right now but everyday she is a little better. The doctors and nurses were amazing and I’m just so thankful to the family that chose to donate. Because without them, we would still be waiting.”

Stacey said in a 2020 Herald-News story that Lizzie’s troubles began last August when she started walking with a slight limp. Her face was thinner; her eyes slightly bulged; and she felt a little tired.

But a trip to Lizzie’s doctor and some bloodwork did not reassure Lizzie and her family that she was fine; instead, it resulted in immediate hospitalization to an intensive care unit.

Within 12 hours, Lizzie had a kidney biopsy, a blood transfusion and a PIC line inserted so she could begin dialysis.

That’s because Lizzie had nephronophthisis (NPHP), a cystic kidney disease that is the most frequent genetic cause of end-stage kidney disease in people 30 and under, according to the Journal of the American Society of Nephrology.

And unlike patients with polycystic kidney disease, those with NPHP either have normal or slightly diminished kidney size, the journal also said.

Treatment options are dialysis and kidney transplant. For months, Lizzie went to Lurie Children’s Hospital in Chicago in Chicago three times a week for dialysis treatments.

In addition, Lizzie also had slipped capital femoral epiphysis. This happens when the growth plate is damaged, which causes the ball of femur to slip off the neck of the femur, according to John Hopkins University.

Stacey said Elizabeth’s kidneys was absorbing the calcium in her body. An X-ray showed where the bones in Elizabeth’s legs “were slowing starting to dissolve,” Stacey said in the 2020 Herald-News story.

So Lizzie, with 10 percent kidney function, had surgery six weeks ago to place screws to attach her femoral head to her hip.

As a mom, Stacey sometimes felt it was unfair that she, at 40, was healthy and didn’t need medicine.

“But my little daughter is on so many medicines and sees so many doctors,” Stacey said. “She didn’t deserve this.”

In fact, Lizzie was still recovering four weeks later when, at 8 a.m. May 19, the family received a call that the hospital may have a kidney for Lizzie. So after saying good-bye to their 17-year-old son Nicholas, Stacey and Lizzie’s father Felix took Lizzie to the hospital.

Lizzie was prepped at 7 p.m. and given medication to make her sleepy 45 minutes after that. And then Lizzie was on her way to a four-hour surgery. The family received updates about every 90 minutes, Stacey said.

“And then at 12:30 a.m. May 20 her kidney was officially transplanted,” Stacey said.

All Stacey knows is that the kidney had belonged to a 19-year-old man from the Chicago area, she said.

Felix returned home shortly after Lizzie’s surgery to stay with Nicolas. Stacey stayed with her daughter for the full 10-day hospital stay, she said. The couple has another daughter, Ariel, who is in the service, Stacey said.

Stacey said people may think, “Oh, she’s had a kidney transplant. Everything is fine.”

“That’s so far from the truth,” Stacey said. “Because she still has kidney disease. And it’s such a roller coaster ride. One month, everything might be great. The next month, things might be different.”

For instance, Lizzie had intense pain for the first three days, and she will need physical therapy to help improve the muscles in her legs and hips, Stacey said.

She is also currently taking nine medications and will continue with two of them for life to keep her from rejecting the kidney, Stacey said. Doctors may add or drop certain medications. One medicine is causing tremors in Lizzie’s hands and legs. She needs to use a walker in the house.

Lizzie is also “living in a bubble” for the next few months because her immune system is severely compromised from medication she had to take before the transplant surgery, Stacey said.

For now, Lizzie also sees her health care providers in Chicago twice a week. But that’s far, far preferable than making that same trip three times a week for dialysis, Stacey said.

Watching Lizzie’s energy gradually returni is also encouraging, Stacey feels. So is the fact that Lizzie is such a naturally positive person, she has not complained once during this entire journey, Stacey said.

“What we pray for now is that she can just enjoy her life – become a teenager and do teenage things,” Stacey said. “We just want Lizzie to have a great life and not to have stress or worry about these things. But we’re just taking it one day at a time.”