Living with Chronic Kidney Disease

Chronic kidney disease (CKD) is a progressive condition in which kidney function declines over time, eventually limiting the body’s ability to filter waste and excess fluids from the blood. For many patients with advanced CKD, dialysis becomes necessary to perform this critical function. A large proportion of people on dialysis also experience hyperphosphatemia, a condition marked by elevated phosphorus levels in the blood that can lead to uncomfortable and sometimes serious symptoms.

Ivan’s experience with CKD began early in life. He was first diagnosed at age 10 and started dialysis soon after. At 12, he received a kidney transplant, offering him a renewed sense of normalcy. But at 22, his health took another turn when his kidney transplant failed, and he had to return to dialysis.

“I knew the symptoms. I knew what was going on,” Ivan explains. “Fluid just starts to build up in your body, and some of it in your lungs. It makes it a little hard to breathe. Legs swell. It affects your vision. Toxins start to build up in your body since your kidneys are not flushing things out.”

The emotional toll of kidney failure was immediate and intense. “In the beginning, there was a lot of ‘why me,’ a lot of anger, a lot of sadness,” he says. Over time, that mindset shifted toward determination. “Eventually, you get to that point where you strap on those boots and decide, ‘okay, I’m going to fight this thing. I’m going to stick around.’”

Having already lived through dialysis as a child, Ivan understood the discipline it requires. Treatment schedules are demanding, typically taking place multiple times a week and shaping daily life around them.

“You have to manage your time, your energy,” he shares. “You know that three days a week, you got to lose to dialysis. So, you plan things for the four remaining days that you have.”

Like many people undergoing dialysis, Ivan also had to carefully manage his phosphorus levels. Hyperphosphatemia is common in CKD because the kidneys can no longer effectively remove excess phosphorus from the body. “You need to control that phosphorus intake,” he emphasizes. “And if prescribed medicine to help control it, take that medicine.”

He experienced early symptoms of high phosphorus, including dry, irritated skin that felt like a persistent, painful itch. Managing these symptoms required strict attention to diet, which brought its own challenges.

“Part of a balanced diet of being a New Yorker is pizza,” Ivan says. “When you’re on dialysis, you have to watch both your potassium and your phosphorus. Tomatoes are high in potassium. Cheese is high in phosphorus. Well, what’s in the pizza?” Cultural foods also became more complicated. “Being Hispanic, corn, tomato, beans are a big part of our diet. Those things are high in both potassium and phosphorus. So, it’s a way the diet is affected by culture or tradition.”

Despite these limitations, Ivan remained focused on maintaining his health and preparing for another transplant. Adhering to medications, dietary restrictions, and dialysis schedules was not just about feeling better day to day — it was also critical for transplant eligibility.

“The transplant hospitals want to see that you’re doing your best to manage your illness,” he explains. “Because they want to make sure that they’re giving a kidney to somebody that’s going to take care of it.”

When the long-awaited call finally came, Ivan and his wife were ready. “I think me and my wife were both shaking a little bit,” he recalls. “We compared it to having a baby. You have your go bag ready. So, we got the call, they told us this was a good match, and we just grabbed our bags and go.”

Today, Ivan is living with a successful kidney transplant and experiencing a renewed sense of freedom.

“I’ve had this kidney now just a little over a year and a half,” he says. “And the reality of maybe traveling overseas is becoming more real — something I had imagined for decades.”

Ivan’s story highlights the realities of living with chronic kidney disease, from early diagnosis and dialysis to managing complications like high phosphorus and ultimately receiving a transplant. It also underscores the importance of persistence, adherence to treatment, and hope for a better quality of life.