Kidney recipient’s circle of love, life - from Indiana to Oklahoma

March 10^th is “World Kidney Day,” a time to recognize that one in 10 adults have been diagnosed with chronic kidney disease (CKD). One patient’s story reaches more than 800 miles where she met her donor’s wife.

By IU Health Senior Journalist, T.J. Banes, tfender1@iuhealth.org

There are many reasons why Starla Simpson celebrates her 32 years of life. She has overcome more than a few challenges and she’s a believer in second chances.

There are also many reasons why Sarah Shellenberger, 41, believes that it is more than a coincidence that the two women crossed paths.

Simpson is from Indianapolis. Shellenberger is from Oklahoma. They are separated by more than 800 miles and are joined by a single kidney, named “Big Billy.”

Simpson’s story of resilience began at a young age. She was placed in foster care and was adopted by her caregiver. She likes to say she has “about 40 sisters” because over the years, her adoptive mother nurtured dozens of children. She also has four biological siblings.

In 2017, Simpson was at her niece’s birthday party when she noticed her urine was a strawberry color and had an unusual odor. Leading up to that day, she’d experienced unexplained headaches and nausea. An avid workout enthusiast Simpson thought maybe her aches and pains were related to exercise.

“It sounds crazy but sometimes the only relief I could get was laying on the cool bathroom floor,” said Simpson. In February of 2017 she was diagnosed with kidney failure and began dialysis in April 2018. In a Facebook group she started, “My Kidney Journey,” she documents her kidney disease. Her posts include pictures of her fistula and candids of her showing up for treatment wearing a zip-up reindeer onesie.

“I think your personality will help you through,” said Simpson. She also fills her social media feed with photos of her dialysis team, and IU Health transplant team members. She was in the care of nephrologist Muhammad S. Yaqub.

“He’s been wonderful. He’s more reserved but he understands that I have a bubbly personality and accepts that and meets me where I am,” said Simpson

Just shy of two years of hemodialysis, Simpson learned that a perfect match had been found for her. That kidney became known as “Big Billy.” On Feb. 23, 2020, in the care of Dr. William Goggins, she received a new gift of life.

Months passed and Simpson began searching for her kidney donor. She scoured social media and the Internet and connected with Shellenberger. Like Simpson, Shellenberger, documented her journey and her love story with her husband, Scott Shellenberger.

At 12:25 p.m. on Feb. 21, 2020 she lost the love of her life. Scott Shellenberger died of a heart attack – two days before Simpson’s life-saving transplant. The women connected informally and Shellenberger shared more about her husband’s life.

It was August of 1999 when Sarah Shellenberger first met the man who would become her husband. They were both students at Southern Nazarene University in Oklahoma. Scott Shellenberger was a couple years older than Sarah. He was tall and athletic – he played college basketball. After graduation, he joined the Marines and Sarah began her teaching career. In 2017 they reconnected through social media. Scott was in Oklahoma and Sarah was in Tennessee. They met in Tulsa for what they thought would be a quick lunch but turned into a 10-hour date.

On Sept. 1, 2018, the two exchanged vows and celebrated at a reception on Scott’s childhood farm. The couple made their home on the farm and began trying to start a family. After a series of doctor visits, medications, procedures and tests, they opted to try In vitro fertilization (IVF) and connected with a clinic in Barbados.

It was during her second visit to the clinic in February of 2020, when Sarah – accompanied by her mother - was notified that Scott had a heart attack.

“On Feb. 19, 2020, I received the worst news of my life. My healthy, perfect 41-year-old husband was not going to survive. I was beyond shocked. I fully expected him to come out of the coma and bounce back to the strong, vibrant man he was,” Shellenberger writes. As she held his hand and sobbed through her final good byes, Sarah Shellenberger made a decision that would change the life of Simpson and many others.

She decided her husband’s life would live on though others. He became an organ donor. She doesn’t know much about the other recipients but when she heard from Simpson, she said it was her own lifeline.

“It meant the world to me,” said Shellenberger. It was Sept. 7, 2020 - seven months after Simpson received her new kidney, Shellenberger learned her embryo transfer was a success. She was pregnant. On May 3, 2021, she gave birth to an 8 pound, five-ounce baby boy she named “Hayes Philip-Scott Shellenberger.”

“Every day, as I look into his blue eyes (just like his dad’s) and admire his chubby cheeks and long arms and legs, I can’t believe how richly God has blessed me,” Shellenberger wrote.

Simpson too, is a single mom of a little boy.

“There are so many similarities that I can’t believe this is a coincidence,” said Shellenberger, who was pregnant with her son when she first heard from Simpson. “It’s absolutely a circle of life. None of this makes sense on this side of heaven but I think I’ll figure it all out some day.”

Each year on the anniversary of her transplant, Simpson celebrates by taking cookies to her IU Health transplant team that includes her transplant coordinator Alisha Pedigo Turner.

“I love my transplant team. There was a point when I thought life was knocking me down and I was not in control. They helped build me up,” said Simpson.

“I love Dr. Goggins’ confidence. He is comfortable performing transplant surgery and that makes me confident,” said Simpson. She also takes time to reflect on her future. She’s taking classes toward becoming a surgical technician. She said she hopes to one day work alongside Dr. Goggins in transplant surgery.

Both women speak out publicly in hopes of educating others about the need for organ donation.

Donate Life America reported in April 2021 that there were more than 39,000 organ transplants and more than 100,000 people awaiting transplant. Of those awaiting transplants, 85 percent were in need of a new kidney. Last year, 552 organs were transplanted alone or in combination with other organs, the most in one year at IU Health since 2007.

“I hope through my journey, I can bring awareness to others,” said Simpson. “If I can inspire or touch someone’s life with my story, then I am doing what I am called to do.”

The gratitude she expresses goes beyond her donor. Simpson is also thankful to Sarah Shellenberger for her decision to continue a circle of life and love.