My Journey with Chronic Kidney Disease: A Decade of Questions and Answers

Living with chronic kidney disease, or CKD, has shaped much of my life, though it wasn’t something I understood right away. When I was diagnosed in 2011 at the age of 16, the cause of my condition was a mystery. My doctors confirmed I had CKD, but they didn’t know why my kidneys were failing, and failing fast. Within just six months of my diagnosis, my kidneys had rapidly deteriorated, and I faced the harsh reality of living with severe kidney failure.

A rollercoaster medical journey

In 2011, shortly after my diagnosis, I started hemodialysis. It was a surreal and overwhelming time. At 16, my peers were thinking about exams and social events, while I was navigating life tied to a machine that was keeping me alive.

In 2012, I received my first kidney transplant, which gave me a reprieve from dialysis. For a short time, I felt like I was regaining some normalcy in my life. Unfortunately, this transplant didn’t last. A few years later, in 2016, my transplanted kidney failed due to sepsis, and I had to return to hemodialysis. The disappointment and the physical toll were immense.

Life on dialysis became my new normal once again. Then, in 2022, I faced yet another challenge as my body continued to fight the effects of kidney failure. But hope came back into my life when I received my second kidney transplant. Now, four years later, this transplant is still going strong, and I remain grateful for every day it gives me.

Finding the cause

For nearly a decade, my CKD journey was full of unanswered questions. My doctors couldn’t pinpoint the cause, which added to the frustration and emotional toll. It wasn’t until my late 20s that I discovered the root cause of my CKD: a genetic condition. This revelation brought clarity and closure to years of uncertainty.

My journey with CKD has taught me resilience and adaptability. Living with chronic illness isn’t just about physical health, it affects every aspect of your life.

Here’s what I’ve learned along the way

Advocate for yourself

My experience of rapid kidney failure, dialysis, and transplant surgery has shown me the importance of advocating for my health. You know your body best. Never hesitate to ask questions or seek second opinions.

Adapting my lifestyle

From managing a kidney-friendly diet to making time for rest and self-care, I’ve learned how to balance my health needs with the demands of everyday life. Even fatigued, I’ve tried to stay active and focus on what my body can do.

Coping with dialysis

Having gone through hemodialysis twice, I’ve learned how challenging and exhausting the process can be. Dialysis takes a physical and emotional toll, but it also saved my life. My time in dialysis centers gave me a deep appreciation for healthcare workers' dedication and fellow patients' strength.

Managing setbacks

The loss of my first transplant in 2016 was devastating. It reminded me that living with CKD means managing setbacks and finding the strength to keep moving forward. My second transplant in 2022 has given me hope and renewed energy to live my life to the fullest.

Finding community

CKD can feel isolating, but I’ve found strength in connecting with others who understand this journey. Sharing my story has helped me feel less alone and allowed me to support others facing similar challenges.

Looking ahead

At 30, I’ve lived with CKD for nearly half my life. From the rapid decline of my kidneys at 16 to the challenges of dialysis and the hope brought by two transplants, my journey has been anything but straightforward. While I can’t change my genetic condition or the past, I’ve learned to focus on what I can control: managing my health, finding joy in small victories, and staying hopeful for the future.

CKD doesn’t define me, but it’s taught me resilience, patience, and the value of hope. I share my story to remind others that every step forward is worth celebrating even in the face of setbacks.

I hope you have a blessed journey and my prayers are with you.