A life-saving gift

SPENCERVILLE — It was during the Lenten season in 2022 that Dr. Christine Gaynier received the email from her mother, Shirley Mueller. Lent is a season of reflection, a time when Gaynier said she is reminded to “try and be a good and faithful servant.” The email, sent by Lisa and Randy Stoll to their parents and sisters, was forwarded to Mueller from Lisa’s mother. The two women have been long-time friends. At one time, both families lived in the same small town and attended the same parish, St. Patrick’s in Spencerville. The email message outlined the need for a kidney transplant and the search for a suitable donor for the Stolls’ 17-year-old son, Will.

“Slim Odds”

After reading of Will’s need for a kidney, Gaynier, a local family medicine physician, wanted to help. “I really thought the odds were slim that I would be a suitable donor for Will, but wanted to try and help if I could,” said Gaynier. She admits that she also wanted to donate in memory of two very important young men, her brother Mike Mueller and Curtis Schwinnen. The day after receiving the email, Gaynier called the staff at the Transplant program at Ohio State University Wexner Medical Center to inquire about the testing process. After completing the recommended online questionnaire, Gaynier was promptly contacted by the OSU staff and arrangements were made for her to complete “a battery of blood tests.”

The Process

After the completed lab tests were reviewed and deemed acceptable, Gaynier proceeded to the next phase of testing, which involved 24-hour blood pressure monitoring. Once her blood pressure was determined to be normal, Gaynier was then scheduled for a full day of testing, education and evaluations at OSU. On June 13, 2022, she met with a full team of healthcare providers, including transplant surgeon, Dr. Amer Rajab, nephrologist Dr. Todd Pesavento, a donor advocate, a social worker, a dietitian and a transplant coordinator. After additional lab tests, an EKG, a chest x-ray and a CT angiogram of the kidneys all were found to be normal, Gaynier was told that she would likely be a good candidate to be a living kidney donor, but the information obtained from both she and Will would be discussed with the Patient Selection Committees at both OSU and Nationwide Children’s Hospitals for approval.

“An Amazing Day”

On June 29, 2022, Gaynier was approved to be a living kidney donor for Will. “I was really surprised and excited when I found out that I could be a kidney donor for Will, especially since I went into the testing believing that the odds were so slim that I would be able to donate. OSU [staff] allowed me to call Will’s mom, Lisa, myself to let her know. That was an amazing day, for sure!” Lisa shared the same sentiment, “That was just amazing! I was so happy that she was a match for Will.”

The Problem

Will’s need for a kidney was due to a congenital condition known as Eagle-Barrett Syndrome. Only one in 30,000-40,000 babies is born with the condition. Ninety-five percent of those with the condition are male. The urinary tract is significantly affected in virtually all children with Eagle-Barrett Syndrome, also called, “Prune Belly Syndrome,” due to the poor development of the abdominal muscles that is characteristic of the disease. Those born with Eagle-Barrett Syndrome are monitored for the development of chronic kidney disease.

An Earlier Transplant

Shortly before his third birthday, Will developed chronic kidney disease, requiring his first [kidney] transplant. Will’s father, Randy provided a kidney to his son at that time. The kidney remained healthy and stable until 2022.

The Delay

After Gaynier was determined to be a suitable donor for Will, the transplant was scheduled for August 30, 2022. While awaiting the transplant, Will developed a COVID-19 infection in mid July, 2022. Will’s comment, “I was pretty sick,” is definitely an understatement. Will’s creatinine (a blood test which is an indicator of kidney function) had climbed to almost 12 mg/dL. The normal range is typically less than 1 mg/dL. His oxygen saturation, normally in the mid to high 90s, had plummeted to 70% and he had to be placed on a mechanical ventilator. With the severely impaired kidney function and the postponed transplant, Will was started on hemodialysis, a process of purifying the blood when a person’s own kidneys are unable to perform their normal function of filtrating and excreting waste products. Will remained on hemodialysis three times per week until his recent kidney transplant.

The Day (Finally) Arrives

Following his recovery from COVID, Will’s transplant was re-scheduled for January 17, 2023. As the date approached, Lisa said, “the focus was on [Will] staying healthy. I became more anxious when it [the day of surgery] came closer.” Will and Gaynier met for the first time at Nationwide Children’s Hospital in Columbus the day prior to the surgery. They were placed in hospital rooms side-by-side, with time to become acquainted. Although Will and Gaynier both admitted to being a little anxious about the upcoming surgery, they were also eager to finally have the opportunity to proceed with the procedures. Gaynier said that her role as a physician put her in a unique position during the process and allowed her to “experience the process from the ‘patient side’ instead of the ‘doctor side’ and gave [her] a different perspective on the process that people undergo in order to be a donor.”

Gaynier’s surgery took approximately 2-3 hours. She was able to return home 2 days after surgery and returned to work 3 weeks after the procedure. Will’s transplant took 5 hours to complete. Will, who has been a Boy Scout “since the end of fifth grade” recalled that his first memory upon awakening from surgery was seeing friends from his Boy Scout troop. Some of the friends from the troop work as patient transporters at Nationwide Children’s Hospital and took the opportunity to visit their friend as he recovered from surgery. Will is well-respected by his fellow Scouts, having achieved the rank of Eagle Scout on December 15, 2022. For his Eagle Scout project, Will built four 8-foot long picnic tables outside the church where his Boy Scout meetings are held. The site is near a nature preserve. Residents at a nearby retirement center are able to enjoy picnic lunches, using the tables built by Will.

Benefits of Surgery

Since undergoing the kidney transplant, Will no longer requires hemodialysis. He reports feeling much better. “My appetite is a lot better and I’m gaining actual weight now. Before [the transplant], I was gaining water weight.”

Gaynier said that, “Being a living kidney donor has been an amazing experience for me and has allowed me to live out my Catholic faith in a very real and tangible way. I would encourage anyone who is able, to consider living kidney donation. I have always believed in servant leadership and I hope that my kids see an example of that when they look at me. I am fortunate to have a great husband and three amazing kids that support me in everything that I do. The most exciting part of being a living kidney donor is being able to play a part in significantly improving someone’s quality of life through medical science, the teamwork of a lot of wonderful medical professionals, faith, and a little luck. I have really enjoyed getting to know Will during our hospitalization and since surgery. He’s an exceptional young man that I hope can now live his life the way he wants to.”

Future Plans

To decrease his health risks, Will is currently completing his studies online. He is a senior at Westerville South High School. He was recently accepted into the Surgical Technology program at Columbus State College, where he plans to begin classes in the Fall of 2023.

“An Experience Like No Other”

Will’s father, Randy encourages others to consider become an organ donor. “If anybody ever thinks about donating a kidney, I would encourage them to explore it. It’s an experience that is like no other, “ said Randy Stoll.

According to information from https://donatelife.ohio.gov, a kidney is the most frequent type of living organ donation. For the donor, there is little risk in living with one kidney because the remaining kidney compensates to do the work of both kidneys. More than 106,000 Americans and 3,000 Ohioans are waiting for a life-saving organ transplant. Twenty people die each day in the U.S. while waiting for a transplant. Every 48 hours, an Ohioan dies while waiting for a transplant. Those interested in learning more about organ donation can call 888-745-1511.

Still Waiting

As Will recovers from his kidney transplant surgery, others remain on the transplant list, hoping for a suitable donor. One of those individuals is Tammy Hunnaman of Lima. Tammy was diagnosed with polycystic kidney disease (PKD) at age 24. Tammy first became familiar with PKD at age five when her father was diagnosed with the condition. Since then, seven of Hunnaman’s family members were diagnosed with the condition, including three of her siblings, a niece, a nephew and Hunnaman’s 22-year-old daughter, Grace. Several of those family members have died, including Hunnaman’s brother, Rick, who she states, “I depended on to get me through this.”

Major Life Changes

Hunnaman, who worked in healthcare for 40 years, has noted many life changes associated with kidney disease. She is no longer able to work and reports that she no longer has the stamina to perform her routine household duties. She is connected to a “cycler” for 9 hours every night as she receives peritoneal dialysis. Her kidney function is now at 11% and she has been on the transplant list since September, 2021. Hunnaman’s day begins with taking the 12 pills she needs each morning to control abnormalities related to her kidney disease. “It changes your life,” said Hunnaman.

Will a Kidney Arrive in Time?

Hunnaman is concerned that, “the longer time goes on [without receiving a donor], it might be less likely. I may get too old or too sick” to be a candidate for a transplant. Meanwhile, she keeps her cell phone nearby, waiting for a call that a kidney is available for her. A recent call from a 614 area code caused some initial excitement as she thought the call might be from hospital staff informing her that a kidney was available. Unfortunately, the call was related to her medical supplies and not news of a donor.

While Hunnaman continues to wait, her kidneys have grown larger due to the cysts. The kidneys occupy so much space in her abdomen that it causes persistent discomfort. She receives iron infusions as needed due to iron deficiency anemia and she takes antibiotics prophylactically prior to any procedures because of her risk of infection, particularly the risk of peritonitis associated with the catheter in her abdomen that she uses for peritoneal dialysis.

While it is helpful that Hunnaman has a healthcare background, she also relies on her sister-in-law Kathy, a Registered Nurse, to help her manage her many medical appointments and procedures. Hunnaman reports anxiety about going places on her own because of her decreased stamina.

While she manages the many challenges associated with kidney failure, Hunnaman continues to wait and hope. She is hoping that the next call she receives from the 614 area code will be the one informing her that she will be receiving a healthy kidney.