16 October 2023
CLOQUET Eva Flovick, 18, and her mom Katie Johnson of Cloquet call themselves “best friends.”
They’ve built a bond over many things, including attending concerts and exploring record stores, and listening to their favorite artist, Taylor Swift.
Flovick’s favorite Swift album is “evermore,” while Johnson said Swift’s song “Soon You’ll Get Better” is one of her personal favorites. “It reminds me of dealing with Eva,” she said.
By that, Johnson means navigating a disease called Focal Segmental Glomerulosclerosis (FSGS), which Flovick was diagnosed with in 2019 when she was just 14 years old.
Rare disease
FSGS is a rare disease that causes scarring of the kidneys, making it difficult for them to filter waste. The disease can lead to kidney failure, according to the American Kidney Fund.
The disease has no cure, but can be treated. However, after a certain amount of scarring occurs, those with FSGS must undergo a kidney transplant.
Shortly after her diagnosis, Flovick started dialysis and has already received two transplants, the first of which came from her mom in 2020 when schools were totally distance-learning, something Flovick said helped her balance school and her recovery. She spent five months in the Twin Cities.
Johnson shared that even after a transplant, the disease has a high chance of returning, which has been the case after each of Flovick’s surgeries.
Flovick found out she was matched with a donor for her second kidney transplant the morning of her high school graduation party in July.
“I was super excited to have my grad party because I was worried I wasn’t going to have it if I got the call (for the transplant) before,” Flovick said. “Then it was really exciting to be able to spend time with everyone right beforehand,” she continued.
So far, Johnson and Flovick said this transplant has been “a lot better than the first one.”
Unlike with her initial transplant, Flovick’s doctors kept up with “aggressive” treatments immediately after her surgery.
Johnson added that the FSGS has since returned, but doctors are keeping it at a low level and remain hopeful.
Flovick described FSGS as aggressive but also unpredictable.
“Some people, it just doesn’t come back after a transplant at all for some reason. Some people, it doesn’t actually affect them until they’re older, they don’t even know they have it until they’re older,” she said.
It’s ambiguous when and how exactly the disease developed, but Flovick shared that she, her mom and doctors figured it was when she was in elementary school.
The disease can be genetic. However, after testing, doctors determined Flovik’s case was not genetic. Because of the rarity of the disease, it remains unclear how Flovick developed FSGS.
The diagnosis came as an “abrupt change we weren’t really expecting,” said Flovick, adding that “for years” doctors misdiagnosed her symptoms as allergies.
“When we heard it was kidney disease it kinda like,” she paused, “rocked our world,” her mom finished.
Flovick noted that FSGS affects what she can and can’t do. She explained, “you can get … out of breath a lot, so you can’t do much physical activities. I missed out on a lot of school.” Her mom added, “normal teenage things she missed out on.”
They added that Flovick had to quit her job as a result of FSGS and that she frequently feels tired, low-energy, nauseous and has high water-retention. “Before I was diagnosed, my eyes, most mornings I would wake up, would be so swollen I could barely open them,” Flovick said.
“It was hard for her to stay in contact with friends, too, because they’re doing all this stuff and Eva was sick,” Johnson said. “(Her friends) have been great, but she couldn’t do her normal slumber parties and eating the same foods,” she added.
Flovick elaborated that she’s had to restrict her diet to low-sodium, low-potassium and low-phosphorus foods, as well as having liquid restrictions, which “eliminates pretty much everything.”
Maintaining mindfulness
Despite missing lots of school since Flovick’s diagnosis, Johnson said they’ve never had to worry about it affecting her ability to complete homework and graduate on time, adding that the Cloquet School District has been “amazing.”
“Her senior year she had a call for a kidney and Eva was stressed out because she wanted to graduate,” Johnson said.
Flovick continued, “There was only like a month of school left, so I was like ‘What am I gonna do with all the work for this last month?’ and (school officials) were like … as a joke, ‘Well if you don’t accept the kidney we’re not gonna graduate you.’”
Throughout high school, Flovick was able to do classes online, have a flexible class schedule and was provided a homebound teacher a professional who would visit Flovick in her home and assist her with coursework, and who has since become considered a part of the family, they said.
Flovick said that as of right now, she, her mom and doctors are not totally sure when exactly she’ll be able to fulfill her dreams of going out of state hopefully to California for college to study nephrology, but that everyone is working to make it happen “as soon as possible.”
Nephrology is the diagnosis and treatment of kidney diseases; Flovick aspires to work in pediatrics.
“She wants to be with the kids because she knows how it feels,” said Johnson.
Flovick said she is also keen to participate in medical research, has sent her kidneys to be studied and has participated in blood draws for research.
“I figure if (the study) isn’t something that is going to hurt me in any way, then I’m gonna do it because it could help figure out something for the long run,” she said.
“It is frustrating to have something that doesn’t really have much knowledge about it just because all of your treatments are kinda just hopeful. They don’t know if it will for sure work or for sure do anything … you just gotta try it and find out,” Flovick said.
Despite the frustration, Flovick focuses on maintaining a mindfulness about her disease.
“I do get angry at it sometimes, but I figure getting angry isn’t gonna do anything, so I try to just keep it as normal as I can in other parts of my life,” she said.
Through a variety of treatments, including dialysis, plasmapheresis and liposorber; steroid shots twice a week; daily medications; and an abundance of trips to the University of Minnesota Masonic Children’s Hospital and Mayo Clinic, Johnson said she and Flovick have focused on “staying strong for each other.” Only a handful of Flovick’s appointments have been in Duluth or Cloquet because of the rarity of the disease.
“I cried a lot when she first got diagnosed,” Johnson said. “Then I saw how it affected Eva, seeing me so upset, so, we just found laughter in it … of course we’re serious when we have to be, but we find humor.”
“I want to do whatever I can for her, our family does: my brother, my mom, my sister, aunts, uncles, cousins we just have a really close, great family that we can lean on,” Johnson said.
Together, Flovick and her mom combat the disease together by continuing to foster their close relationship and retaining a sense of normalcy in their lives. Days that consist of doctors appointments also include going out to eat or sifting through record stores or Barnes and Noble.
“I just want to make her better, and I will do anything to try to have it happen,” Johnson said of her daughter. “I always tease her, though, I can’t give her another kidney.”
How to help
A benefit is being held at the Lost Tavern, 602 22nd St., Cloquet on Saturday, Oct. 21 from noon to 5 p.m. Proceeds will help the family cover medical bills, transportation and lodging for Flovick’s medical appointments.
Those who are not able to attend the benefit can make a donation in person at Frandsen Bank in Cloquet or via GoFundMe by searching for “Eva is a Fighter, and She Needs Your Help.”
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