Rare heart and double lung transplant
brings promise of new life to Katie Grace

By Tamara Steiner on June 23, 2014

Katie Grace and John_for websiteWhen the phone rang in the Groebner house at 3 a.m. on June 21, John Groebner was pretty sure he knew who was calling and why. He had been waiting for this call since last January, when his little girl, Katie Grace Groebner, 11, officially went on the transplant list at Stanford’s Lucille Packard Childrens Hospital.

Still, when the call came, they were not ready.

Despite the months of anticipation, training and consultations leading up to this moment, John and Kathy, Katie Grace and her sister, Savanha Hope, 15, say none of them were prepared for the fear — and the permanence — of what was about to happen.

“I just went outside on the patio and sat alone for awhile,” Kathy Groebner said. “I felt empty. I just wasn’t ready.”

Just 12 hours later, a frail Katie Grace would be on an operating table where a team of surgeons would remove a heart and lungs so badly damaged by pulmonary hypertension that there was no option except to replace them.

The Groebner’s journey to Stanford began in Minnesota five years ago when Katie went in for what was supposed to be a fairly simple operation to repair a small hole in her heart. That was when doctors discovered that she had pulmonary hypertension (PH) — a rare disease that went undiagnosed throughout her early years. Doctors expected her to live maybe another year, at best. Katie was 6 years old.

Knowing she would need medical care beyond what they could get in Minnesota, they sold their house, packed what they could into an RV and headed west to the Bay Area where John had a job waiting, and they would be close to the PH specialists and cutting edge care at Stanford.

A rough trip

The road to California was bumpy — in every way. They blew tires, the brakes failed coming over Donner Pass and none of them knew what they would find when they finally got here.

Their first days in California were beyond stressful, Kathy recalls. They were parked miles from town at the Regency Mobile Home Park on Marsh Creek Road. The refrigerator and the air conditioning in the RV were both failing, Savanha Hope then in fourth grade, was not excited about starting school where she feared she would be way ahead of the class. And Kathy’s cousin was having a baby back in Minnesota. Kathy, by nature confident and at her best in a crisis, was filled with self-doubt. She questioned her decision to uproot the family and leave what was already a well established support group of friends and family in Minnesota.

On a particularly stressful morning a few days after they arrived, Kathy went to Sonset Flowers on Clayton Road to send flowers to her cousin. The shop was then owned by Clayton Community Church member, Donna Meisner.

“I was sobbing,” Kathy said. “And when Donna asked me what was wrong, I just lost it and told her the whole story.”

Community steps up

The encounter weighed heavily on a deeply religious Donna. That night, she retrieved Kathy’s phone number from her credit card receipt and called her.

“I’m not sure how,” she said. “But I know I’m supposed to help you.”

Within days, church members had stepped forward, offering a place for the family to live, practical help, fundraising and moral support. The kids started school . Katie went for two hours a day and received tutoring at home. They bought a house and settled in. Trips to Stanford and hospital stays became routine.

Katie, a spirited, sweet child, became a familiar face at every community event, even having her own car – “Katie’s Dream” – in the annual Labor Day Derby. But, despite the cutting edge medications she wore in a backpack, Katie’s health continued to decline. The dark circles around her eyes got darker; she lost weight, smiled less and got weaker until finally, doctors said the only option Katie had for a future was a heart and lung transplant. She officially went on the list in January.

Pulmonary hypertension (PH) is an extremely rare disease. In Katie’s case, the disease is “idiopathic,” meaning they don’t know what causes it. Sometimes, if diagnosed early enough, the disease can be managed with medication. In Katie’s case, the damage was too great for an optimistic prognosis. The only possibility was a transplant. So, when Katie Grace was officially listed, it was a bitter-sweet “graduation.”

No turning back

When the call came at 3 a.m., the day before Father’s Day, the Groebner family knew there was no turning back.

The family arrived at Stanford early that morning. Katie’s surgery was scheduled for 10 a.m., but was pushed back several hours while the donor transplant teams were all assembled.

At one point, after several hours of waiting, Kathy went down to the hospital cafeteria for a minute. On the ride back up, she shared the elevator with a medical team carrying two coolers. One said “heart”, one said “lungs.” That’s when she realized she was riding back up with Katie’s new organs.

Katie Grace’s surgery took a little more than five hours; far less time than the 7-8 hours planned.

Her surgery went “great, without a hitch and no complications,” John said. “Better than expected, and the best Father’s Day ever.”

Katie’s recovery has also been remarkable, says the family. The second day after her surgery, she was off the ventilator and breathing on her own and despite the chest tubes and monitors, she sat up, smiled and waved and talked to nurses about what she wanted to do when she got out of the hospital – all days ahead of schedule.

She will stay in the hospital as an in-patient for several weeks, maybe as long as three months. Then, Katie and the family will move to the Ronald McDonald House near the hospital, where she will continue her recovery.

Katie Grace faces a lifelong regime of medications and vigilance. She will always be at risk for organ rejection and infection. Although the realist in Kathy says “we are really trading one disease for another,” the family is joyful, grateful to the donor and to the overwhelming community and worldwide support.

“When God sends a miracle,” Kathy says. “He goes big.”

To learn more about Katie Grace’s journey or to donate to Katie’s Dream for a Cure, go to www.gofundme.com/Katies-Dream

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