One foot in front of the other
In the spring of 2020, after a hike with her husband and kids, Stephanie’s legs swelled unfathomably. She took a video of herself pressing her fingers into her legs, showing how her fingers would sink into the skin.
Really, the entire first part of the year had been physically tough, beginning with a difficult bout of COVID-19 in January. Then in March, she recalls complaining to her husband that she felt like she had been punched in the kidneys. Some days she’d wake up and her face would be swollen, or her hands would swell to the point that her rings would be stuck. Her hair was falling out in clumps too. She documented these oddities and brought them to her doctor who said these symptoms were probably related to having recently had a baby – that she was stressed, and likely experiencing postpartum issues. Stephanie was prescribed antidepressants by three doctors, but she knew there was something different going on.
A mother of five and a healthcare technician who worked on her feet at a hospital, Stephanie was quite active. For recreation, the family hiked – that was their go-to activity on Sundays. Residing an hour-and-a-half from Yellowstone National Park, they drove to new places to hike week after week.
But on that day in May when her legs swelled on a hike, the family piled back into the car to get Stephanie to the hospital.
“You shouldn’t be here right now,” she remembers a doctor saying to her in the ICU, a comment not about her location but about her existence. She had numerous blood clots, including in her heart and lungs, which the doctors immediately focused on. In addition, she was spilling 15 grams of protein in her urine; Stephanie’s kidneys were failing.
A kidney biopsy revealed IgA nephropathy and secondary focal segmental glomerulosclerosis or FSGS, two rare kidney disorders. She was put on a regimen of high-dose steroids aimed at stopping the inflammation in her kidneys. When she was discharged from the hospital a few weeks later, chemotherapy would be added to the regimen. The once avid Yellowstone hiker was now using a walker.
Hopes before rare kidney disease
“We were always the planners, and then everything changed.” Stephanie and her husband had been saving for a down payment on a house when medical issues cascaded in 2020. “We had the low option insurance, so you go from thinking nothing is going to happen, and then this. Kidney issues are a lot more complicated than you think.” They became a one-income household when Stephanie couldn’t return to work, and house plans were put on hold.
The family and community rallies
The family’s community in Idaho Falls has helped Stephanie, her husband and the kids repeatedly. Babysitting the little ones, bringing groceries, taking her older kids shopping when they needed clothes, shoes or supplies. On Christmas morning, the local police station, in conjunction with a local radio station, arrived on her family’s doorstep with gifts for the kids. Her stepmom flew up from Mexico to help, feeding everyone, taking Stephanie to chemo appointments.
“It was amazing to see how people stepped in to help; many people we didn’t even know,” she says. “It was really, really humbling.”
Stephanie decided with her husband to start homeschooling the kids, now ages 3, 4, 6, 13 and 17, because of the increased risk of complications she faced if she contracted COVID-19 while her body was immunocompromised. “They gave up a lot,” she says, describing how her children were just “normal kids” but have grown up much too fast. They have all seen her fall from blood pressure fluctuations and the older two have an impressive vocabulary of medical jargon. Stephanie’s teenage daughter is now certified in CPR and first aid.
Switching medicines and care providers, adjusting diet, getting second opinions, and finding support at the IgA Nephropathy Foundation are part of the routine now. Between the meds, the appointments, and caring for 3 toddlers, Stephanie is tired and also resilient. “I wouldn’t have survived without Bonnie,” she says, of IgA Nephropathy’s founder, Bonnie Schneider.
Stephanie acknowledges a strength from her upbringing, as she faces life’s hurdles. “I grew up not knowing where I was going to sleep or where the next meal would come,” she said matter-of-factly of her childhood. “My brothers and sisters and I lived in the worst-of-the-worst places.” A family at the throes of a parent addicted to heroin, Stephanie remembers that she was perpetually sick.
IgA nephropathy is an immune-mediated disease that causes inflammatory molecules and proliferation of certain cells in the kidney that damage surrounding tissue. While not fully understood, there is a correlation between upper respiratory infection and IgA nephropathy. Stephanie and her doctors have conjectured that Stephanie’s frequent respiratory infections as a child may have been the trigger for immune response that led to IgA nephropathy. While less understood, the other culprit could be her 2020 COVID-19 infection, which early studies are finding can result in the immune response leading to IgA nephropathy.
Today, Stephanie and her family are looking forward to moving into their new home next spring, which they are building through the help of Habitat for Humanity. She marvels at the maturity of her kids, the older two most of all, and recognizes a resilience in them that resembles the no nonsense, move-forward attitude that characterizes her own life. She has reconnected with 2 of her siblings; together they are helping each other heal from trauma of their childhood.
And Stephanie and her husband have introduced a monthly date night to have some regular together time. This month’s date was a long walk in the neighborhood, just the two of them.
On good days, the family is back at Yellowstone on the trails, moving forward.