By Gregg Shields

Jonathan and Donna Kolp will experience a new kind of Thanksgiving this year.

Jonathan Kolp plans to celebrate an exceptional Thanksgiving with his parents this year. It will include a traditional holiday meal of turkey, stuffing, sweet potatoes, mashed potatoes and gravy, plus family activities that involve attending football games and holiday parades.

Why is that exceptional? Because for the past 20 years, the 23-year-old McKinney resident has been on dialysis. Foods high in potassium, like potatoes, and high in salt, such as gravy or stuffing, had been off-limits. Travel to events like gridiron contests or out-of-town parades was difficult at best, and often impossible, since Mr. Kolp required hours of daily dialysis.

All that changed in late July, when he received a kidney transplant at UT Southwestern Medical Center. Now, Mr. Kolp can enjoy experiences many take for granted, such as a delicious holiday dinner, a road trip with friends, or a late-night pizza.

“To me, it’s like Christmas morning, every day,” Mr. Kolp said.

When he was a baby, Mr. Kolp was diagnosed with a rare genetic blood disease called atypical hemolytic uremic syndrome, or aHUS. Caused by a chronic, uncontrolled activation of the body’s immune system that normally destroys and removes foreign particles, aHUS attacks internal organs – usually the kidneys – and can impact the function of the heart, brain, liver, and pancreas.

At the time of his diagnosis, Mr. Kolp was one of only 40 aHUS patients in the U.S. Standard treatment involved massive infusions of frozen plasma, and plasmapheresis, the process of removing his whole blood, separating the blood cells from the plasma, and reconstituting the whole blood with donor plasma or a saline solution for reinfusion.  

“Most children live at home, growing, and playing with friends and family,” said Dr. Swee-Ling Levea, Assistant Professor of Internal Medicine at UT Southwestern, who has been Mr. Kolp’s kidney transplant physician since July. “For the most part, Jonathan grew up in the hospital.”

Mr. Kolp’s childhood was anything but normal. Since 1996, he has been on dialysis, connected to a machine for almost 65,000 hours, adding up to more than seven years of his life. Over 18 years, he had three infusions per month, totaling an incredible 32 gallons per month.

He incurred multiple strokes, seizures, and staph infections, all while taking up to 13 medications per day.

In late 2012, Mr. Kolp’s condition reached a turning point with the introduction of eculizumab, also known as Soliris, the first drug approved by the Food and Drug Administration to treat aHUS.

“This medication is lifesaving,” said Mrs. Donna Kolp, his mother. “It sustained him, keeping his body from attacking itself, and protected his organs from the devastating effects of this horrible disease.

“You see, Jonathan would never be eligible for a transplant without this medication. If he were to receive a transplant without Soliris, aHUS, would destroy the new kidney. It was never an option.”

Largely home-schooled, Mr. Kolp attended public school his final year, graduating as a senior from McKinney Boyd High School. He experienced both senior prom and graduation with his classmates.

But the grind of two and a half hours of dialysis, five days a week, wore him down.

“Dialysis is very hard on the body,” said Dr. Levea. “I haven’t seen many patients who have been on dialysis for 20 years, especially one who has been on dialysis through his childhood. Initially, Jonathan didn’t want a kidney transplant, but he got tired of being hooked up to the machine.”

In December 2015, the Kolps met with UT Southwestern’s kidney transplant team to be considered for the surgery. The young man spoke with his transplant coordinator, pharmacist, nutritionist, financial coordinator, transplant nephrologist, and, finally, a social worker.

“Fortunately,” said Mrs. Kolp, “they felt he deserved a shot.”

In late July 2016, they got the call that a kidney donor was available.

“Jonathan and his Mom are really unique people,” said Dr. Levea. “They truly appreciate this transplant. The first thing they did when they got to the hospital for the operation was to pray for the donor family that God may be with them in their time of grief.”

“Their generosity made all the difference,” Mrs. Kolp said. “Without it, my son would be chained to a machine for the rest of his life.”

On July 31, former UT Southwestern Professor of Surgery Dr. Juan Arenas completed the transplant at William P. Clements Jr. University Hospital. Immediately after, Mr. Kolp felt better. Four days later, he went home, and within a month, he began exercising as part of his rehabilitation.

Today, just like anyone his age, Mr. Kolp’s focus is on the future. He plans to attend Collin College in 2017 to pursue a career as a paleontologist. And other than taking three medications to prevent rejection of the transplanted kidney, Mr. Kolp has the same health regimen as others his age.

Mrs. Kolp faces a new career as well. Her days as an appointment clerk, dialysis nurse, medical chauffer, and medication dispenser are over, and she’s now considering a career in health care.

“Jonathan has changed so many people’s lives,” Dr. Levea said. “This is why we do transplants. We see a kid who has so much life, and he’s enjoying every second of it. He teaches us to live every day of life to its fullest.”