Living with Chronic Kidney Disease

Chronic kidney disease (CKD) is a progressive condition in which the kidneys gradually lose their ability to filter waste and excess fluid from the blood. As kidney function declines, patients may require dialysis, a treatment that removes toxins and maintains mineral and electrolyte balance in the body. Many people with CKD who are on dialysis experience hyperphosphatemia, or elevated phosphorus levels in the blood, which can lead to additional health complications.

For patients living with CKD, symptoms can develop quickly and unexpectedly. Quiana first noticed something was wrong while working at a daycare. Simple tasks became harder to manage, and her energy levels dropped significantly.

“I was starting to get sluggish. I couldn’t keep up with the kids anymore. Then I started to look like I was nine months pregnant, and I moved like I was nine months pregnant.”

Concerned about the sudden changes in her body, she went to the emergency room. There, she received life-altering news.

“They were the ones that told me, ‘Hey, your kidneys aren’t working. That’s just fluid building up on you.’ And everything from there went fast.”

Quiana’s father had also lived with kidney disease before passing away due to an infection, giving her a deeply personal understanding of the condition’s seriousness. Although Quiana was familiar with kidney disease through her father’s experience, the diagnosis was still overwhelming.

Years after her diagnosis, chronic kidney disease continues to shape her daily life. Managing CKD often requires ongoing medical care, lifestyle adjustments, and strict treatment schedules.

“I’ve learned to kind of cope and push through it. I’ve turned dialysis into my job.”

Dialysis has become a central part of Quiana’s routine. Her treatment schedule — three times a week for three hours and forty-five minutes — makes maintaining traditional employment difficult. Like many patients undergoing dialysis, the physical demands of treatment and recovery have required her to step away from work.

To maintain a sense of purpose and emotional balance, Quiana has turned to creative outlets. She spends her time crafting, painting, and gardening, using these activities to manage stress and stay engaged.

“Crafting takes my mind off any pain I have. Even when I’m feeling drained, I’ll get up and paint or I’ll glue stuff together…I made a whole studio in my house.”

Family is another source of motivation. Quiana’s 18-year-old son, Jay, plays a significant role in her determination to keep going despite the challenges of CKD.

“Life is just starting for him, and I think he’s going to need me. I think I’ve done a good job so far and I just wouldn’t want to leave him.”

In addition to dialysis, managing phosphorus levels is one of the most persistent challenges she faces. Hyperphosphatemia is common among dialysis patients and can require careful monitoring and dietary control.

“Phosphorus is my only issue. Everything else is in line. At my dialysis center, they make a little report card. The only thing that comes back crazy is my phosphorus, and they’re always like, ‘Quiana, you know better.’”

Phosphorus levels are heavily influenced by diet, making daily food choices an important part of CKD management. Quiana has adapted by learning new cooking techniques, measuring ingredients carefully, and avoiding foods that can increase phosphorus levels. These adjustments often mean preparing separate meals, eating smaller portions, or limiting food and fluid intake when outside the home.

The lifestyle changes required for chronic kidney disease can be physically and emotionally demanding. Dialysis schedules, dietary restrictions, and ongoing symptom management can affect independence, social life, and overall quality of life.

Despite these challenges, Quiana remains determined to continue doing the things she enjoys.

“I just refuse to lay down. I can’t. I always tell people I have too much to do. I mean, there’s things to paint and make and bake and, all those fun things to do. Nothing’s going to stop me at this point. I hate when I don’t feel good, but I’ll fight through that too”

Her story reflects the reality of living with chronic kidney disease and hyperphosphatemia: a condition that requires constant management, resilience, and adaptation. At the same time, it highlights how patients continue to find purpose, creativity, and motivation while navigating life on dialysis.