Hear My Journey: Living With Kidney Disease

For John D. Ortiz, DHSc, RPFT, a professor at the Loyola University Chicago’s Parkinson School of Health Sciences and Public Health, kidney disease wasn’t something he felt — it was something he discovered by chance during a routine checkup at age 43. At the time, he felt healthy and was physically active. But a blood test revealed that his kidneys were only working at about 50% capacity. Over the next decade, doctors worked to pinpoint the cause, which was eventually diagnosed as polycystic kidney disease — a genetic condition that can lead to kidney failure.

Holly Mattix-Kramer, M.D., MPH, a professor of public health at Loyola University Chicago and a part of John’s care team, explains why kidneys are so vital. She compares them to teenagers taking out the trash — working nonstop to filter out waste, excess water and salt from the body. If the kidneys don’t work properly, waste builds up in the bloodstream, potentially causing fatigue, swelling, loss of appetite and eventually serious heart and bone problems.

John’s journey highlights how silent kidney disease can be. Often, there are no symptoms until the disease has significantly progressed. That’s why Kramer encourages everyone to ask their doctor for simple blood and urine tests to check kidney function. Early diagnosis is key, especially now that new medications can help slow disease progression and reduce the risk of kidney failure by up to 50%.

Diet has been a huge part of John’s lifestyle change. He cut back on red meat and ultraprocessed foods like hot dogs and frozen pizza — foods that are common but hard on the kidneys. His family, including his 12-year-old twins, made dietary changes too. He also takes special medications like phosphate binders with meals to help manage nutrient levels.

Despite being on dialysis, John continues to work, travel and stay active. Dialysis treatments, though time-consuming, haven’t stopped him from attending conferences or enjoying time with his family. Planning ahead and staying committed to his treatment and diet have allowed him to maintain a full life.

His biggest advice to other patients? Stay informed, stay active and develop a plan for managing your health. “Learn everything you can about your kidney disease and stick to your program,” John says. With the right mindset and care team, life with kidney disease is manageable — and full of possibilities.