How I’ve Outlived My Incurable Kidney Disease for 30 Years

Polycystic kidney disease is a chronic kidney condition that hits more than half a million Americans. Here's what it's like to live with this potentially deadly diagnosis.

susan in treatmentCourtesy Susan Flesia

Susan Flesia was only 28 years old when she was hit with chest pain severe enough to send her to the emergency room. The health-conscious mother of two was in shock—could she be having a heart attack? The answer was no, but the news still wasn’t good.

At the ER, Flesia’s chest pain turned out to be indigestion, but diagnostic blood screens suggested she had a kidney infection. Her primary care doctor admitted her for further testing, and an ultrasound revealed that Flesia’s kidneys and liver were covered in cysts. “The doctor told me I had polycystic kidney disease. I didn’t even know what that was.”

She soon found out: Polycystic kidney disease is an incurable genetic disorder that causes fluid-filled cysts to cover and enlarge the kidneys. Symptoms include high blood pressure, cysts on the liver, and blood vessel complications in the brain and heart. Watch for the signs that your kidneys could be in big trouble.

A bodybuilder, Flesia ran her own personal-training business; her healthy lifestyle helped her avoid complications until her early 40s when her blood pressure began to climb. Medication helped, and for the next ten years, her life seemed relatively normal. Then she realized that her rib cage was expanding. “I noticed because I’m small in the waist. My rib cage was getting thicker and I was tired and nauseated. I began having back pain, and difficulty breathing.”

Susan Flesia bodybuildingCourtesy Susan Flesia

An ultrasound showed that her kidneys had bulged in size, and now weighed six pounds each. A normal kidney weighs a quarter to half a pound. Thousands of cysts covered the organs, and they were pressing into her lungs, making breathing difficult. As her kidneys became more diseased, their ability to cleanse her blood plummeted.

Eventually, her doctors recommended that she have her kidneys removed. The first one came out in 2016; the second a year later. Flesia started peritoneal dialysis after the first surgery: She underwent a regular procedure that allowed the blood vessels in the lining of her abdomen to filter and cleanse her blood.

Unfortunately, the peritoneal approach didn’t work very long for Flesia: She felt nauseated during the treatment and vomited several times a day. She ended up switching to another method called hemodialysis, in which blood is routed out of the body and through a machine that filters out waste products before sending it back into the body. Make sure you’re not making any of these innocent mistakes that can cause kidney problems.

Typically patients have to go to a hospital or dialysis center three or four times a week to undergo this four-hour-long procedure. But Flesia’s doctors offered her another option: She could be trained to do her own dialysis at home using the NxStage machine from Fresenius Kidney Care. The NxStage machine allows the now-56-year-old Flesia the flexibility of scheduling her treatments when they’re convenient.

“My friends watch me insert these huge needles into my treatment sites, and they can’t believe I’m able to do it—but I don’t have a choice.” Ultimately, Flesia hopes to get a kidney transplant; the Rhode Island resident went on the state’s waiting list in 2015, she tells Reader’s Digest. “The average wait time is six to seven years. I’m lucky that I have the option of dialysis until I can get a kidney.”

Thirty years after her diagnosis, Flesia continues to live life to the fullest. “I love gardening at home and going on motorcycle rides. I’m kind of stubborn. I’m not going to let this get the best of me. It’s all in how you deal with it. Plus, I have an amazing support system.” Her advice to other patients is that the little things matter. “Keep every one of your dialysis appointments and listen to your doctors. Do what they say, and watch your diet. Diet plays such a big role.” Watch for these silent signs you might have a kidney infection.

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Jen Babakhan
Jen Babakhan is an author and credentialed educator living in California. She writes regularly about advice and culture for Reader's Digest. She is also the author of Detoured: The Messy, Grace-Filled Journey From Working Professional to Stay-at-Home Mom (Harvest House Publishers, 2019). She earned her BA in Communication Studies from California State University, Stanislaus. You can follow her on Instagram @JenBabakhan , Twitter @JenBabakhan, and Facebook @JenBabakhanauthor.