‘I can do this’

Lillie Holtz’s successful kidney transplant means she can now begin to dream about going to her high school prom and colleges she might attend. (Chris Clark | Spectrum Health Beat)

Julia Steinke, MD, medical director of pediatric kidney transplant at Spectrum Health Helen DeVos Children’s Hospital, began caring for Lillie in July 2018. (Chris Clark | Spectrum Health Beat)

“Lillie needed urgent dialysis,” Dr. Steinke said. “In order to administer hemodialysis, we placed a catheter in a large blood vessel in her neck, leading directly to her heart.” (Chris Clark | Spectrum Health Beat)

“Oh, I was popular at the hospital,” Lillie said. “They said I was the funniest person. I can be really independent and I’m also very bossy.” (Photos courtesy of Lillie Holtz)

Lillie was diagnosed with a rare autoimmune disease that affects the small blood vessels in the body. “Usually patients are middle-aged, not as young as Lillie,” Dr. Steinke said. (Chris Clark | Spectrum Health Beat)

In July 2020, Lillie and her mom, Jodi, drove to Grand Rapids to prepare for transplant surgery. But Lillie’s blood samples suggested she would reject the available donor kidney. (Chris Clark | Spectrum Health Beat)

“In January 2021, there was another kidney and everything matched,” Lillie said. “I got my transplant. When I woke up after the surgery, I felt amazing.” (Chris Clark | Spectrum Health Beat)

“Lillie is such a bright, mature young woman,” Dr. Steinke said. “She’s had some really rough challenges, but she has a voice and she uses it. And I love that about her.” (Chris Clark | Spectrum Health Beat)

Lillie said she feels deeply grateful to her anonymous donor. “I’ll need another kidney in maybe 10 years or so,” she said. “But that’s OK. It’s all worth it. I can do this.” (Chris Clark | Spectrum Health Beat)

While other 16-year-olds thought about the prom and focused on SAT scores, Lillie Holtz considered her upcoming kidney transplant.

It would be the fourth time her number came up for a new kidney.

“I first started feeling sick in March 2018, when I was 13 years old,” Lillie said. “I had constant ear infections and finally they led to an infection in my bones. It was extremely painful. There were days I could hardly breathe, it hurt so bad.”

In pain and miserable, she slept up to 20 hours a day. She couldn’t keep any food down. She lost 15 pounds in a month.

When Lillie’s temperature soared to 103 Fahrenheit, her mom, Jodi Holtz, panicked.

Jodi helped her daughter into the car and drove her straight to the local emergency department in the small town of Quincy, Michigan, near the Indiana border.

Doctors couldn’t pinpoint a cause, so Lillie and her mom would return home without answers.

Back at home, Lillie would continue to feel sick more often than not. Multiple trips to the clinic followed, but a diagnosis remained elusive.

When Lillie ate, the food came back up. Fatigue floored her. If she tried to walk just a few steps, she would get so weak she’d pass out.

When her condition worsened, she and her mom made another trip to the local emergency department.

It led to a frightening diagnosis.

“I was told my kidneys were failing,” Lillie said.

A diagnosis

In July 2018, Lillie and her mom headed to Spectrum Health Helen DeVos Children’s Hospital and met with Julia Steinke, MD, MS, medical director of the pediatric kidney transplant department.

“(Lillie) had significant edema and fatigue,” Dr. Steinke said. “Labs showed Stage 3 acute kidney injury.”

Lillie needed to start dialysis immediately and was started on medication in hopes that her kidney function would return. While the medication improved her lung function, she did not recover her kidney function.

This meant Lillie’s kidneys were injured or scarred beyond repair. She would need a new kidney—a transplant.

But first, she needed immediate help.

“Lillie needed urgent dialysis,” Dr. Steinke said. “In order to administer hemodialysis, we placed a catheter in a large blood vessel in her neck, leading directly to her heart. Later, we placed a catheter into her abdomen, so that she could receive a different kind of dialysis, called peritoneal dialysis.”

Kidney dialysis removes waste products from the blood when kidneys are unable to do their job. Usually, a patient undergoes hemodialysis at a dialysis center three times a week, about four hours each time. With peritoneal dialysis, the patient receives dialysis every day at home.

Dialysis can also help control blood pressure and balance important electrolytes in the blood, such as potassium, sodium and calcium.

“When I talked with Lillie in the intensive care unit and learned more about her history—the ear infections, the mastoiditis, nose bleeds and pneumonia that she had had—I knew we were dealing with ANCA vasculitis,” Dr. Steinke said.

The form of vasculitis Lillie battled is called granulomatosis with polyangiitis.

“It’s an autoimmune disease that affects the small blood vessels in the body,” the doctor said. “It is a rare and aggressive disease and usually patients are middle-aged, not as young as Lillie. We see it here maybe only once or twice a year.”

Dr. Steinke performed a kidney biopsy to confirm her diagnosis, then put her on a regimen of steroids to help put the disease into remission.

“Lillie needed to be in complete remission for six months before she would be eligible for a kidney transplant,” Dr. Steinke said.

In August 2019, Dr. Steinke put Lillie on the waiting list for a new kidney.

The wait can typically take six months to a year.

For Lillie, who faced continuing complications, it would take longer—a year and a half.

“When reality hit, when I first really understood what was happening to me, I got really depressed and anxious,” Lillie said. “I had an allergic reaction to the dialyzer and had to go back to hemodialysis, which meant I had to go to a dialysis center three to four times a week rather than have the dialysis done while I slept at night. But I had an allergic reaction to that, too.

“I couldn’t go to school—teachers came to our home once a week. I would get severely nauseated. It was just horrible. Dialysis made me feel so alone in life.”

As Lillie lost more weight and battled infections, doctors had to pause plans for a kidney transplant.

Gratitude

In July 2020, things seem to turn around.

Not one but two kidney offers came in.

When Lillie and her mom drove to Grand Rapids to prepare for surgery, Lillie’s blood samples showed the presence of an unusual antibody that suggested she would reject a donor kidney.

“When we receive a kidney offer from a deceased donor, we review the offer and give a provisional acceptance if we feel the kidney could be a good match for our patient,” Dr. Steinke said. “Then a test is performed to determine whether the recipient’s blood is compatible with the donor’s blood. Unfortunately, Lillie’s blood wasn’t. That means the likelihood of her body rejecting the new kidney is high and we had to refuse the offer.”

Lillie found herself waiting once more.

Another possible match came in November 2020.

“My suitcase was packed and I was ready,” Lillie said. “But that one wasn’t a match for me, either.”

More waiting.

“In January 2021, there was another kidney and everything matched,” Lillie said. “I got my transplant. When I woke up after the surgery, I felt amazing. I wanted to walk around, but they said it was too early. But in two days I was able to walk around and, on day four, I went home.”

She’ll have to take anti-rejection medication for the rest of her life—and she can’t miss any doses, Dr. Steinke said.

“She’s doing really well,” the doctor said. “Lillie is such a bright, mature young woman. She’s had some really rough challenges, but she has a voice and she uses it. And I love that about her.”

Lillie grinned.

“Oh, I was popular at the hospital,” she said. “They said I was the funniest person. But I can be really independent and I’m also very bossy.”

Lillie said she sometimes wonders about the donor, who would remain anonymous.

She feels deeply grateful.

“I’ll need another kidney in maybe 10 years or so,” Lillie said. “But that’s OK. It’s all worth it. I can do this.”

Lillie has begun to dream again.

She dreams about her high school prom. She dreams about good SAT scores. About colleges she might attend.

“I’m thinking I might want to be a child psychologist,” Lillie said. “I’m the friend everyone comes to for comfort. I could have used that, so now I would like to be that for others.”

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