Dr. Vicki Stovall has never shied away from juggling a lot, at work or home. The oldest of seven children, she was born in Japan during the Korean War to a Japanese mother and an American dad. Her dad served in the 82nd Airborne division of U.S. Army, known for its parachute operations.
Stovall matched her dad’s intensity and work ethic. She studied at Wake Forest University School of Medicine School in the 1980s when she was a single mom, caring not only for her two daughters but also a goddaughter. In medical school she met her future husband, Novant Health cardiologist Dr. Kenneth Rhinehart, and gave birth to their son Phillip during her internship. “I was never great at timing my pregnancies,” Stovall joked.
Over the decades she developed a thriving High Point medical practice in nephrology, a specialty focusing on the kidneys. She loved nephrology because it allowed her to “look at the disease process beyond just one organ system,” she said. The role of the kidneys “encompasses the workings of the whole body, which still remain an elegant mystery to me.”
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She didn’t want to slow down when she developed a significant case of carpal tunnel syndrome in both hands in 2017. Surgery lessened the characteristic numbness and tingling in her hands and wrists – often associated with repetitive motions and keyboard work – and let her continue to work.
She didn’t know until three years later that the carpal tunnel had been the first sign of a very rare condition known as AL amyloidosis. By the time she met Dr. Kathleen Elliott, a specialist in hematology and oncology with Novant Health Cancer Institute - Thomasville, she was unable to stand for more than seconds at a time and fighting for her life.
Tracking the clues
Carpal tunnel syndrome is more common in older adults, and Stovall figured having it in both wrists simultaneously might just be bad luck. Her condition progressed rapidly. She could no longer play violin in Salem Community Orchestra. She couldn’t plait her granddaughter’s hair. Her surgeries in November and December 2017 improved her symptoms, and Stovall thought the situation was resolved.
A couple of years later, she noticed pain in her hands and feet and sought help from a rheumatologist colleague. Together, they suspected she had rheumatoid arthritis, but the treatment didn’t work.
By March 2020, Stovall realized she had lost about 10 pounds since the previous spring. Within a month, she needed to pull up a chair during hospital rounds to talk with patients because she was tired. She worried she might need to retire before she really wanted to.
Stovall was lightheaded and could barely stand at her next appointment with the rheumatologist in early May 2020. Her low blood pressure “was almost unmeasurable,” she recalled. The rheumatologist sent her to the Novant Health Kernersville Medical Center ER. While she received fluids and felt better, labs revealed protein in her urine. That sign, she knew, is never normal.
Stovall scheduled tests to identify the source of the urine protein. The physician who ran them was a close friend of Stovall’s and called a few days later in tears. Test results showed that Stovall’s body was definitely producing abnormal protein that her kidneys were trying to filter out. It wasn’t clear yet where the protein originated, but the evidence pointed to a diagnosis of AL amyloidosis.
Stovall understood: She had a condition that attacks vital organs, potentially causing one or more of them to fail. It could lead to her death.
In this disease, “abnormal proteins called amyloid can build up in different organs and tissues of the body,” Elliott explained. “These proteins are supposed to be broken down and eliminated. But in amyloidosis, they accumulate and form deposits.” The deposits can interfere with normal functioning of the heart, kidneys, liver, digestive tract and other organs.
If she had this frightening condition, Stovall wanted to be treated close to home in Kernersville, at a practice where she felt warmth and connection. She picked Elliott. After another series of tests, Stovall learned that her cardiac biopsy had turned up positive for AL amyloidosis. Amyloid deposits were taking the place of normal heart muscle. The heart was one of the most dangerous places for amyloid to be.
Telling patients about life-threatening diagnoses is “one of the difficult things I do in my job,” Elliott said. Telling Stovall was even harder, because Stovall, as a doctor, recognized what could lie ahead.
Chemotherapy and a bone marrow transplant
Plasma cells were accumulating uncontrollably in Stovall’s bone marrow and impairing healthy cells in her heart, kidneys and gastrointestinal tract. The best treatment would have been a bone marrow transplant, which adds healthy stem cells to the bone marrow. But Stovall was too weak for a transplant, Elliott gently told her. Instead, they would need to start chemotherapy right away.
Treatment began in July 2020, four months after Stovall first noticed her telltale weight loss. Her daughter Safia moved in to help her mom with weekly chemotherapy appointments. Rhinehart slept in another room from his wife to prevent the possibility of infecting her with COVID-19 when no vaccine was available.
The chemotherapy made her “deathly ill.” She was hospitalized for a week with severe nausea, unable to eat or drink. Her weight dropped again. She had already updated her will and made a quiet decision that if she couldn’t get through another week without being able to eat, she wouldn’t fight anymore and seek only “comfort care.” No feeding tube. No dialysis.
Stovall, like her mother, is Buddhist. “Suffering is a very Buddhist tenet. But I didn’t feel my suffering was something I could embrace for very long,” Stovall said. “I wanted to move past that.” She also didn’t want her family to suffer.
Learning to be vulnerable
Elliott wanted to try adding one more medication to the chemotherapy. Daratumumab had just been approved by the U.S. Food and Drug Administration for the treatment of amyloidosis and showed great promise. Stovall thought, “After everything else, why not?”
To everyone’s joy, it started to work. By January 2021, Stovall could drive herself to her chemotherapy sessions. She brought a full catered meal with dessert for the team each time to thank them.
Stovall recovered steadily to the point that she was able to get a bone marrow transplant in November 2021. She encountered a setback when she developed engraftment syndrome, in which the body rejects its own cells. Her difficulty with eating and other symptoms returned but over the course of 2022, they subsided.
Today, Stovall is in remission and back to living a full life. Her bone marrow has restored itself and she has no measurable abnormal plasma cells. Now retired, she is playing violin again in the orchestra, likes to quilt and sew, and has helped her autistic grandson study for his driver’s license.
Along the way, part of her spiritual journey has been “learning how to be vulnerable, accept help and repay that,” she said. “I know really good care when I see it. And I have felt it.”
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