How Kidney Stones Taught Me to Speak Up for My Health

Kelsey Fuchs was 16 when she got her first kidney stone. She felt a "sudden, horrible pain" in her groin.

After that first episode, Kelsey went years without another one. But in 2009, the familiar pain returned, and she has experienced it repeatedly as an adult.

"It feels like my whole leg would fall off," Kelsey says. "It's like someone is pinching the veins or tendons in my groin. The pain can bring me to my knees."

A long road with recurrent kidney stones

Kelsey's first kidney stone was 9 mm. It blocked her ureter, the tube that carries urine from the kidney to the bladder. She spent 6 days in the hospital before undergoing a lithotripsy, a procedure that used shock waves to break up and remove the stone.

Since then, Kelsey, a 32-year-old working mom in Pillager, Minnesota, has faced kidney stones of all sizes. The challenges were especially difficult during pregnancy.

"A lot of urologists say you can't feel a kidney stone when it's in your kidney," she says. "I guarantee that you can, especially when you're pregnant."

Recurrent infections and sepsis

The last few years have been particularly challenging. Since 2020, Kelsey has experienced multiple cases of sepsis - a life-threatening reaction to infection that can cause organ failure.

One sepsis episode began after doctors placed a stent in her ureter to keep it open during a kidney stone removal. She recalls being in severe pain for the 2 weeks the stent was in place. When it was removed, the stent was encrusted with stone-forming crystals.

Shortly after returning home, Kelsey developed a 104°F fever and returned to the hospital. She was diagnosed with sepsis. A CT scan revealed her ureter was swollen shut, requiring medication and more stents.

"For 6 months straight, it felt like there was glass in my urethra," Kelsey says.

Breaking through insurance barriers

During this time, Kelsey's insurance limited her to one doctor, one hospital, and one pharmacy. But she wanted more answers from other specialists.

"I was desperate to figure it out," she says.

Eventually, she found help from doctors at the University of Minnesota. They discovered that a 4 cm section of her ureter was damaged by scar tissue. They removed the damaged portion and reattached her ureter to her bladder. When she woke up from surgery, the pain was gone.

"It turns out I wasn't crazy," Kelsey says.

An unexpected allergic reaction complicates care

Kelsey's challenges didn't stop there. During a recent ER visit for a kidney stone, she was treated with an injection of ceftriaxone (Rocephin), an antibiotic she had taken before without issue. This time, however, she went into anaphylactic shock.

"I couldn't move my muscles. Everything burned. I could feel my face swell up, and I could barely see. I could only take very small, short breaths. My lungs were burning," Kelsey says.

Testing later confirmed she had a penicillin allergy, adding another layer of complexity to her treatment.

Finding strength through advocacy

Kelsey says her experiences have made her determined to advocate for the care she needs and to help others.

To find more answers about kidney stones, she started the Kidney Stone Support Group on Facebook. It's become home to more than 12,000 members worldwide.

The group provides a space for people to ask questions, share experiences, and offer support.

Kelsey says seeing people find help on the Facebook group "makes me feel really good. I think about it every day and am so happy I may be making a difference."

Still searching for solutions

For Kelsey, treatments like lithotripsy and surgery bring temporary relief, but her body continues to form kidney stones. She's never passed a stone without medical intervention - that she's aware of.

"My list of lithotripsies and stents is extensive," Kelsey says.

Doctors continue to analyze her stones' composition and explore prevention strategies. In the meantime, she's focused on staying hydrated, eating well, and maintaining a healthy weight.

"It's been a long ride. This has had huge impacts on my boys, too," Kelsey says. "I hope someday I can prevent the stones so my family doesn't need to worry."