After Transplant, Reyes Family Grateful, Planning For The Future

JOLIET, IL — Just days after Lizzie Reyes received a kidney transplant, her tests revealed the ultimate news the young girl and her family had been waiting for — her levels that measure kidney function were below one. Creatine level, which is tested to gauge function, is between .6 and 1.2 in a healthy adult. Prior to her transplant, Lizzie’s level was 8.1.

And while the family celebrates every bit of good news, they are aware that the journey to and through a transplant is one of highs and lows.

“Monday we went to the doctor and everything was great, everything was perfect, and Thursday we went to the doctor, and then it wasn’t,” Stacey Reyes said.

That was the week of June 7. Since that time, Lizzie has been tested and the doctors have taken a wait and see approach — adding testing and adjusting medication to make sure her body and her new kidney are a good match.

Lizzie was put on the transplant list nine months ago. Her family was tested to see if any of them were compatible donors and, despite her mother having incredible creatine levels of .5, she was not a match for Lizzie.

Lizzie had been going into the city for dialysis three times a week. She also had surgery to correct a kidney-related walking issue.

Then, on May 19 at 8 a.m., the family got a phone call that changed the whole trajectory for Lizzie.

"I got a phone call and they said that they had a deceased donor for Elizabeth," Stacey Reyes said. "They told us there was no hurry to get to the hospital, just get there in few hours.

"It was a young donor, local."

Like much of the experience, getting a donor is only the first step in organ donation that could end up being a match or not.

"Literally they could take Elizabeth back and then realize (that kidney) would not work," Stacey Reyes said. "It’s literally a waiting game until she is open and the kidney is in there."

The family arrived at Lurie Children’s Hospital at 11 a.m. and the doctors began blood work on Lizzie.

"She had dialysis the day before," Stacey Reyes said. "Fortunately, she did not need to do dialysis."

Doctors gave the family updates every 90 minutes. At 12:30 a.m. on Thursday, May 20, the new kidney was transplanted, and by 1:30 a.m., Lizzie was wheeled up to her room.

"We went up to her room and she was connected to so many things and had so much medicine going into her," Stacey Reyes said. "In order for the kidney to thrive, your body needs fluid to keep fresh and working properly until the body is adjusted. She was in a lot, a lot of pain. Honestly, it was a lot harder as her mom, mentally because she was in a lot of pain."

The pain Lizzie was experiencing was not actually pain from the incision or the transplant, but rather from the body ridding itself of excess gas. When a patient undergoes a kidney transplant, the surgery includes doctors pumping gas into the body, which then just has to be expelled naturally. It is that buildup of gas that was causing the most pain, and there isn’t really a treatment to make that better.

Prior to the deceased donor, Lizzie was registered on donor lists in Illinois and Wisconsin and, while her mother was not a match for Lizzie, she was working with doctors to see if she was a match for another patient and could be part of an exchange program that pairs donors with families in sets of two that result in multiple transplants. Now that Lizzie received a kidney from a deceased donor, her mother’s donation is on pause. She said she is needing to make caring for Lizzie during her recovery her priority. But when Lizzie is back to health, it is something she would still consider.

"I would not mind because I am right, in this moment, healthy enough to donate. With the tests that I have already done, they did prove that my kidney function is great, and I am a great candidate to donate to somebody," Stacey Reyes said.

Stacey said she cannot imagine the grief of the family who lost their child, and she has incredible gratitude for their decision to donate their loved one’s organs.

"Without the deceased donor’s family deciding to donate, we would still be waiting for her kidney and our lives would not have been able to change," Stacey Reyes said. "I don’t think people realize how much being an organ donor can change people’s lives."

Although the donation program does not reveal information about the donor to the recipient unless the donor family chooses, the Reyes family does know a little about the person.

"The little bit that we do know about the donor is that he was a 19-year-old male," Stacey Reyes said. "This young man passed away, and his family is now suffering."

Stacey Reyes does not know much more than that, but she does wonder.

"I am wondering did someone receive his other kidney and does Elizabeth have a kidney twin walking around somewhere," she said. "Even if I could just write a letter thanking them and appreciating them. I just think of his mother having heartbreak."

If the donor family chooses to reach out, it would be the kidney transplant coordinators who would contact the Reyes family to let them know.

In the nearly one month since her transplant, Lizzie and her family have still remained very self-contained. Since Lizzie is on so much medication and recovering from two surgeries, her immune system is not at optimal functioning level and the family needs to be vigilant about not only Coronavirus, but any illness she might contract.

But one of the highlights for Lizzie was the ability to get her hair colored after doctors told her mom it was safe for her to do so.

Stacey Reyes said Angel Spa in Shorewood made sure the space was safe for Lizzie.

"It just made Lizzie feel so much better. I am so grateful for his doctor to have said that I can do that," she said.

Now Lizzie goes into the city for testing about two times a week. The family is taking it easy this summer, but looking forward to the future.

"We’re going to be kind of locked down for the summer," Stacey Reyes said. "We want to go on a great vacation when it is safe for Lizzy. Our kids are older now so they remember a lot more. Now we have an even better reason to celebrate."