April 18, 2023
“Amy, your kidneys are failing. You need to get to the hospital.”
Those chilling words on the other end of the phone marked the moment on July 21, 2021, that Amy Reinhardt’s life changed completely.
“I remember feeling so scared and confused as we drove to the emergency room,” says Amy, an Overland Park, Kansas, resident who was 27 at the time. She had been feeling ill for a month but had no idea kidney failure was the cause.
Her fever, fatigue, nausea and coughing seemed like COVID-19 at first, but after 2 negative COVID tests, her primary care physician ordered bloodwork, and the alarming results indicated her kidneys were not properly functioning. A subsequent kidney biopsy revealed that Amy had Goodpasture syndrome, a rare autoimmune disease in which the immune system attacks the kidneys and lungs.
Adjusting to a new reality
Goodpasture syndrome is most often diagnosed in people in their 20s or after age 60, and its cause is unknown. Because the syndrome typically goes into remission within a couple of years, the lungs usually recover, but patients diagnosed with GS may need dialysis or a kidney transplant if damage is severe.
Amy was hospitalized at an area hospital for 3 weeks. Her lungs began to improve after a week in the intensive care unit, which she refers to as “a miracle.” Her kidneys, however, were too damaged to recover, and she was diagnosed with end-stage renal failure. She would require ongoing hemodialysis to clean her blood and rid her body of waste.
In August 2021, Amy began dialysis 3 times weekly for 4 hours per treatment. She quit working as a copywriter and gave up her apartment. “I had to move back in with my parents,” she recalls. “That was a tough transition, but looking back, I am so unbelievably grateful that they were in town and could give me the support that I needed, because I needed a lot. And family, when you’re going through something like a health crisis, is everything.”
In addition to dialysis, Amy initially took a chemotherapy drug, causing her to lose her long brown hair and requiring hospitalization 4 times during the next 6 months due to the treatment’s side effects. Amy says she hated to see the toll her health issues took on her family, but adds, “We got through it, and we’re still getting through it as a family.”
Treatment and hope
While at the dialysis clinic, Amy’s social worker referred her to Turning Point at The University of Kansas Health System. Turning Point offers physical, emotional and social support programs for those living with chronic or serious illness. Programs and classes range from art and journaling to meditation and relaxation.
“Every Turning Point class empowered me in some way, but I especially love the self-care and writing classes,” Amy says. “Writing has always been a passion and getting to share it with others is a gift. I’ve written about the grief that comes from end-stage kidney failure, and I’ve discovered it’s not only a class for creativity but for healing.” Other favorites include the book club and a class on accepting imperfection.
“It’s so important to have a community when dealing with a chronic illness,” she says. “Turning Point offers that community. It’s all individuals who understand and support you. You don’t have to put on a brave face or smile through your grief. They want you to come as you are, and I love that.”
While she gained hope, community and emotional resilience through her participation in Turning Point, Amy’s treatment changed, too, allowing her to have peritoneal dialysis at home. PD involves Amy connecting to a portable machine on her nightstand that cleanses her body throughout the night as she sleeps. PD uses a special solution that works in the lining of the abdomen, called the peritoneum, to remove toxins and extra fluid.
“It was amazing, but there was a drawback,” she says. “It was the timeframe of 12 hours. To this day, I am still spending half of my life on a dialysis machine. It still restricts how I live my life day-to-day. I simply can’t do what other young adults my age are doing, and that’s really, really hard.”
Amy’s daily schedule, physical activities, diet, travel and even clothing are limited by her condition and treatment, a difficult situation for the now 29-year-old extrovert. “I love social interaction. I feed off of it,” she says. “But dialysis has really put a damper on my energy. Right now, I can barely handle more than one activity a day without getting completely exhausted.”
Looking for a match
Amy was accepted into The University of Kansas Health System transplant program and put on a waiting list after receiving her third COVID-19 vaccine in October 2022. Her age and overall health make her an excellent transplant candidate, and she is working to raise awareness about organ donation while she waits for her match. More than 90,000 Americans are in the same position as Amy, waiting for a kidney transplant, according to Donate Life America.
The good news is that kidneys from living donors are healthier and last longer than those from deceased donors. Potential donors are carefully screened, and those who become living donors function normally with their 1 remaining kidney.
The University of Kansas Health System kidney transplant program began more than 50 years ago, providing healthy kidneys to more than 2,500 people to date, making it the 4th-largest kidney transplant program in the nation. Patients come from all over the country to the Center for Transplantation, a 25,000-square-foot facility in Bell Hospital Tower, Kansas City, with exam rooms, lab space and a patient information resource center.
Despite her hardships, Amy recognizes that she’s changed since her diagnosis. Her faith deepened, which she credits for allowing her to live with gratitude and joy despite her circumstances. “It’s something I’ll carry with me the rest of my life,” she says.
She bubbles with hope and enthusiasm as she talks about a posttransplant life of restored stamina and freedom. As she waits for her organ donor match, she can see the future. “All the limitations I’ve lived with for the past 22 months are going to be replaced by amazing possibilities,” she says.
Learn more about Turning Point's classes, programs and activities that teach the art and science of resilience at TurningPointKC.org or call 913-574-0900. For information about our transplant program, call 913-588-1227, and to learn how to become an organ and tissue donor call 804-782-4920.