Joliet Teen Needs Kidney Transplant

JOLIET, IL — It all started with a limp. It was July 2020 and Lizzie Reyes had started limping.

“We thought it was lack of exercise because of COVID,” her mother, Stacey Reyes, said.

Lizzie told her mom that she felt fine. And while she did not really have any other symptoms, her mom said she just did not look well.

“Her complexion slowly started to change, sunken in, pale, eyes bulgy,” Stacey Reyes said.

So they took her in to the doctor.

“I took her to the doctor on a Monday and the doctor did not seem concerned either,” Stacey Reyes said. “We ran blood work on a Tuesday.

This was in August and the next morning, Lizzie signed in to her first day of e-learning at Joliet West High School, where she is a freshman.

Then, her life and the lives of her family members completely changed.

After a whirlwind of tests, Lizzie was admitted to Lurie Children’s Hospital and was in the intensive care unit. She was taken by ambulance, and her mom drove to the hospital not sure what the diagnosis was yet.

“We were allowed to be there,” Stacey Reyes said. “There were three doctors standing outside her room.

They told her that something was going on with Lizzie’s kidneys and they were going to keep her overnight and the next morning biopsy her kidneys. They also needed to insert a line to start dialysis, Stacey Reyes said.

“She had a surgery, biopsy on her kidneys, her kidney function was only at 10 percent,” Stacey Reyes said. “They diagnosed her as anemic as well.

“To me, it was like 40 hours ago we were at the doctor and (now)everything has changed.”

Eventually the diagnosis came: nephronophthisis.

“It’s an extremely rare genetic kidney disease,” Stacey Reyes said.

Parents Stacey and Felix Reyes are carriers, but they did not know. None of the other children in the family - Nicholas Reyes, 16, or Ariel Ormsby, 22, have the diagnosis.

“There is actually no history in either of our families that we are aware of,” Stacey Reyes said.

That diagnosis means Lizzie needs a kidney transplant.

“Everything happened so fast,” Stacey Reyes said. “And I remember thinking, ‘Well, she is on the list, she will get a kidney right away,’ but that’s not how that works.”

Lizzie is on a deceased donor list, but there are a lot of details that go into kidney transplant.

But the good news is that living donors can also donate kidneys if they meet criteria.

Kaitlyn White, the kidney pre-transplant nurse coordinator at Lurie Children’s Hospital in Chicago, said the process begins when someone expresses an interest in being a living donor.

First, potential donors must be between 18 and 55 years old and have a compatible blood type. Lizzie has O positive blood, so a potential donor would need O positive or O negative blood.

Potential donors need to come in knowing their blood type.

The following would eliminate eligibility of a donor: high blood pressure, taking high blood pressure medication, diabetes, heart disease, cancer (but depending on what type and how long they have been in remission) and BMI over 35.

Further, if you are a woman of childbearing age, you would need to be one year postpartum, and it is recommended to wait one year after a kidney donation before becoming pregnant again.

“All this conversation can happen over the phone,” White said of the initial consideration. “I need documentation of blood type, health questionnaire.”

An altruistic donor, if they don’t know the recipient, needs to write a personal statement talking about why they are interested in donating.

“Once we have all three of those items, that’s what starts a 30-day cooling-off period,” White said. "We give the donor 30 days to research what it means to be a kidney donor.”

White said during that 30 days, the hospital cannot reach out to the donor.

Then the testing begins.

“They would come to the main hospital to get blood work done,” White said. “It’s a cross match.

“It all depends kind of on the proteins on the outside of your blood.”

The process is called HLA typing. While Stacey Reyes is a compatible blood type for her daughter, her possibility of donating directly to Stacey Reyes was eliminated during the HLA typing.

“I just went in for a kidney transplant evaluation to see if I am eligible just to be a donor in general,” Stacey Reyes said. “I have a gene that is not compatible with Lizzie. Since I don’t match with her, I want to be able to help another family.

“What that is, is an exchange program.”

White said that the exchange program can pair just two families or the domino effect can mean that multiple families are paired up and multiple kidney transplants take place.

Today, while she is waiting for a kidney, Lizzie goes into the city three days a week for dialysis.

“She’s a pediatric patient and dialysis centers in our area don’t take children under 18,” Stacey Reyes said. “She also is suffering from slipped capital femoral epiphysis — her growth plate is slipping away from her femur.”

The second diagnosis was the reason that Lizzie Reyes was limping.

She’s extremely isolated,” Stacey Reyes said. “She’s extremely high risk. If she comes down with anything, the probability of being hospitalized, that is probably what will happen.”

Additionally, because of the location of her peripherally inserted central catheter (PICC) line, Lizzie Reyes can no longer play the viola, which she has played since she was in fourth grade.

If you are interested in learning more about being a living donor, email White. The medical testing is paid for by the insurance of the Reyes family. Want to keep up with Lizzie's story? Follow her on the Facebook page Love for Lizzie Reyes.