Mallory is twenty. She’s a college sophomore studying special education, she works at an after-school daycare, and her boyfriend is in the Air Force. She loves to travel. She and her family pick a state and then road-trip to all the ones around it, and she’s about to get her first stamp in her passport.
Five years ago, she was a high school junior on the cancer floor of a children’s hospital, swelling up so fast she couldn’t move.
It was December 2020. Her eyes started swelling, and her mom’s first theory was face masks.
“She thought it was something I was using on my face,” Mallory says. “We had no idea what it was.”
Then her stomach started swelling, fast enough that she couldn’t move. The ER diagnosed her with membranous nephropathy and nephrotic syndrome and admitted her to the cancer floor, not because she had cancer, but because her conditions were rare enough that it was the right place for her. She was sixteen.
A kidney biopsy traced it back to COVID. She’d caught the original strain that September, and somewhere in the months after, it had quietly gone after her kidneys. She’d never had a kidney problem in her life.
“Apparently when you have COVID, it can focus on your lungs, or for some people it doesn’t affect anything, but for others it’s your kidneys, your heart. We didn’t know.”
She’s honest about the early days. The urgency in the room, the visitors, the 4 a.m. labs, the needles she didn’t like:
“The first couple of days I was scared. I don’t like needles. I got used to that very quickly, but it was scary because I didn’t really know what was going to happen.”
Once she was home, life got a new shape. Medications. Labs every few days, then weekly, then every few weeks. And sodium, capped at 1,500 milligrams a day. Her nephrologist gave her a translation she still remembers: that’s about one Chick-fil-A sandwich. For the whole day.
Her whole family switched to Mrs. Dash and stopped salting food, full stop. Going out to eat meant pulling up nutrition info and adding everything up, drinks included. In the hospital, dinner had been plain noodles with no butter, and chicken nuggets without skin, and exactly one packet of ketchup.
“I haven’t eaten with salt on my food, even though I’m in remission, in years.”
There was also water, more than four bottles a day, and on lab days, a 24-hour collection jug with a fill line. Hitting it meant she was hydrating right. Missing it meant a slightly less-than-thrilled nephrologist.
She’ll tell you the side effects still pop up sometimes. When she and her boyfriend started dating, his mom didn’t know about the sodium thing, and the food was, in Mallory’s words, salted really heavy. Mallory ate it anyway. Her eye swelled the next day. Nothing major. She laughs about it now.
If you ask Mallory what’s hardest about MN that doesn’t show up in photos, she has a quick answer: the exhaustion.
“I get exhausted from barely doing anything sometimes. From somebody else’s perspective, it could look like being lazy. But it’s genuinely just my disease.”
In high school, that meant choosing. She made it to prom. She made it to football games for a while, then headed home. A lot of what she missed, she missed because she didn’t have the energy to want to go, which is a different kind of loss than being told you can’t.
There was a moment when Mallory thought she was almost there. Then the phone rang and she was told to come back to the hospital. The labs were showing things building back up. Her doctor put her on infusions that wiped out her B cells so they could rebuild stronger. The world shrunk for a while.
In March 2022, about two years after she was first diagnosed, she went into remission. She’s been there since.
She’s off her medications now. She still drinks a lot of water. She still doesn’t salt her food. Six months between appointments instead of three days between labs.
Asked what she’d say to herself the morning of her biopsy:
“I’d tell myself it wasn’t as big a procedure as I thought it would be. In my head it was going to be way worse than it was.”
Asked what she’d tell someone who just got the same diagnosis:
“Be patient. I expected all of it to be over so quick. With the medications and the appointments, it gets annoying, but eventually some people are lucky enough to get to the remission point. It’s just patience.”
“I just had faith that everything would be fine,” she adds. “They were telling me what I needed to do, and I just did what they told me to do, and stayed on top of it.”
Mallory just finished her last lab of the semester. She has finals this week. She’s figuring out, like every twenty-year-old does, what the next part of her life looks like. Hers happens to come with a six-month lab schedule and a bottle of Mrs. Dash.
Mallory hasn’t met another patient her age with MN. When the idea came up that sharing her story might connect her with someone who’d say
“hey, I know how she feels,” Mallory’s answer was simple:
“Yeah. That would be really cool.”
Yes, Mallory, it would.
