A girl, a horse and a horrible disease

Battling kidney disease since toddlerhood, Lyndi Hollinger dreams of a normal life. She finds it when she’s on Sammy’s back.

On Sammy’s back.

That’s where Lyndi Hollinger, 9, can escape to get away from it all—away from kidney transplant fallout, the meds, the thrice-a-week visits to the hospital for infusions to cure a lingering disease.

Instead of lagging behind in health, and in homework, she can climb aboard Sammy.

For at least an hour a week, she gets to trot her troubles away.

Sammy is something of a kindred spirit. The purebred appaloosa is 25 years old, elderly by equine standards.

His body isn’t in prime condition. He could perhaps use an infusion of energy himself. He walks so slowly it’s almost as if time stands still when Lyndi is aboard his back at the Botsford Riding Stable in Sparta, Michigan.

It’s a lot of on your knees, waving the white flag, telling God to stop the pain, just let her be a child for a while. … We just had to be strong and get through it.

Tressa Hollinger
Lyndi Hollinger’s mother

On a recent weekday, time seemed to stand still as Lyndi sat in a hospital bed at Spectrum Health Helen DeVos Children’s Hospital during a plasma infusion.

She tried to pass the time, playing Monopoly Deal with her mom, Tressa Hollinger, and a few Child Life team members.

But it’s not always games.

Child Life teacher Sarah Smith also worked with Lyndi on schoolwork—some multiplication problems.

It’s hard to stay current with schoolwork when life has revolved around at-home dialysis treatments, frequent hospital stays and infusions at the children’s hospital every Monday, Wednesday and Friday.

Multiply that.

In first grade, she missed 75 days. Her track record since hasn’t been much better.

A medical maze

Two registered nurses monitored Lyndi’s vitals as the plasma dripped into her veins, checking her blood every 30 minutes.

Lyndi didn’t have a whole lot to say. Her thoughts were quite likely well beyond the moment, focusing instead on the next time she could climb aboard Sammy.

For a time, she could escape the medical maze.

She and Sammy share a bond, horse and human. They continue to put one foot in front of the other, despite the difficulties.

“I think horseback riding gives her a little bit of a sense that she’s a kid,” Tressa said. “She can’t do contact sports, she can’t go swimming. Before we were done with dialysis, she couldn’t do sleepovers. Horseback riding makes her feel like a normal kid.”

Just as Sammy carries her now, Lyndi has been carrying a lot of emotional weight on her own back, made heavy by lifelong kidney disease and a transplant.

Doctors diagnosed Lyndi with nephrotic syndrome before her second birthday.

Picture a coffee filter. A good filter doesn’t let grounds seep into your coffee. Lyndi’s kidneys were like a bad coffee filter.

“Her kidneys were so bad they were letting everything through,” Tressa said. “We were seeing a lot of swelling in her eyes and legs. Eventually, it went to her belly. That’s what alerted us that it wasn’t just allergy-type symptoms.”

Eventually, Lyndi had so much swelling in her legs that she couldn’t walk.

“She was full of water fluids,” Tressa said. “I was buying 6X clothing to fit over her belly. That’s how much water weight she had gained. My mom was getting nervous because her belly was protruding out so much. My mom’s nephew died of leukemia.”

Tressa took Lyndi to a doctor at Spectrum Health Gerber Memorial Hospital, not far from their then-home in Grant, Michigan.

Dealing with diagnosis

The doctor ordered blood and urine tests.

That same day, they called Tressa to let her know something serious was afoot.

“I went to pick her up from child care and she couldn’t walk,” Tressa said. “She couldn’t open her eyes. I took her right to the ER. By 11:30 that night we were heading to Helen DeVos Children’s Hospital to admit her.”

That’s where she stayed for six days while doctors removed 15 pounds of fluid.

“It was very frightening,” Tressa said. “I know you can live with one kidney. They said both of them were affected. We definitely had to lean on our faith, with our parents being right by our side as well.”

Tressa and her husband, Gy, prayed.

Sometimes they pleaded for their daughter’s well-being.

“It’s a lot of on your knees, waving the white flag, telling God to stop the pain, just let her be a child for a while,” Tressa said. “Sometimes that was his answer and sometimes it wasn’t. We just had to be strong and get through it.”

Because of frequent hospital visits, the family moved from Grant to Sparta, Michigan, so they could be closer to Helen DeVos Children’s Hospital.

As the disease progressed, Lyndi’s kidneys developed scarring.

“After many in and outs at the hospital and trying different medications, she had a kidney biopsy in 2011,” Tressa said. “She had a more intense kidney disease called FSGS (focal segmental glomerulosclerosis). There was more scarring.”

Lasso from an uncle

Tressa and Gy knew where this path would lead. It only had one possible destination: kidney failure.

In fall 2014, Lyndi’s kidneys failed.

She endured hemodialysis from November through March and went on the active donor list in February 2015. Doctors removed her kidneys the following month.

After that, Lyndi had to go through 10 hours of peritoneal dialysis every night at home. Instead of being stuffed with books and toys, her bedroom became laden with boxes and boxes of medical supplies.

And that ever-present, monster-of-a-dialysis machine.

“She was constantly feeling tired,” Tressa said. “It was hard to keep up with school. She would come home from school at 3:30 p.m. and we hooked her up (to the dialysis machine) for 45 minutes. Then at night when she slept, we hooked her up for 10 hours straight.”

The family waited. And prayed. And waited some more.

“While she was doing dialysis, she was great,” Tressa said. “She could almost function like a normal child.

“But when you remove an organ, your body has to try to figure out how to fix that,” she said. “She could only drink so much because she didn’t have kidneys to filter and she couldn’t pee it out like we do. It was hard.”

Waiting for a donor proved the hardest part of all.

Tressa’s brother stepped up, but tests showed Lyndi’s body would instantly reject his kidney. A local news station aired a broadcast about Lyndi’s search for a suitable kidney.

“We had an outpouring of people wanting to test,” Tressa said. “Out of all those people, we still couldn’t find anyone. It’s amazing in this world there are still people willing to sacrifice one of their organs for somebody they don’t even know.”

Further testing showed Lyndi had extremely high antibodies—news that kicked hard, like a hoof landing square in the gut.

“The chances of her ever finding a donor were about 30 percent,” Tressa said. “That was kind of crushing.”

The team at Helen DeVos Children’s Hospital gave IV treatments to lower Lyndi’s antibodies.

At the end of the long trail, fate finally lassoed a kidney. With Lyndi’s improved antibody numbers, Tressa’s brother was able to donate a kidney.

New chance at life

On Dec. 21, 2016, Lyndi received the gift of a lifetime from her Uncle Daryl: a new kidney.

“He was our hero,” Tressa said.

But unlike the princess riding off into the sunset in a fairy tale ending, Lyndi’s story didn’t end there. The more intense kidney disease, FSGS, soon resurfaced and threatened the transplanted kidney.

“Daryl was hoping it would be the start of a new life for her,” Tressa said. “When the FSGS reoccurred, it hit him hard, too. We’re on a journey to preserve that kidney.”

Every chance she gets, Lyndi is on a journey to preserve her childhood.

Trotting, weaving through a pole course and feeling like the princess she’s always longed to be.

On Sammy’s back.

Alejandro Quiroga, MD, MBA, section chief for pediatric nephrology at Helen DeVos Children’s Hospital, said FSGS is not a very common disease, but the threat is real.

“Lyndi can lose her kidney and need dialysis again,” Dr. Quiroga said. “We are hopeful, if we are able to control the protein in her urine, great.”

A new trial has the potential to kick the FSGS to the curb.

“We are going to trial a very innovative treatment for FSGS on Lyndi,” Dr. Quiroga said.

Helen DeVos Children’s Hospital is only the ninth pediatric center in the nation to trial the new treatment, according to Dr. Quiroga.

“We are very encouraged by this,” he said.

Read about dialysis, transplants and other treatments provided by nationally-ranked pediatric kidney specialists at Spectrum Health Helen DeVos Children’s Hospital.

 

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