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Jason's Story

Day by day, step by step

Laying in a hospital bed for three weeks does a lot to a person. Especially to a man who doesn’t believe he belongs there. I had lost a lot of weight. I was exercising regularly and eating well. I didn’t smoke or drink. I had made travel promises to my wife and kids.

Getting diagnosed with chronic kidney disease (CKD) was a rude interruption to me living my best life. At the time, I was 45 years old. Our three boys were happy teenagers. My wife and I were crazy in love and looking forward to more couple time together.

But bad news doesn’t care about your dreams, goals and aspirations. Bad news has a habit of knocking on your door and turning off all the lights, inside of you and around you.

You know how they say a habit can be made or broken in 21 days? Same goes for bad news. In less than three weeks, my diagnosis grabbed my life, shook it like a snow globe, and set fire to the future.

My kidneys were in acute failure and fading fast. A case of bad luck, why me and why now? Some men might have gotten mad. I didn’t get mad. I got sad. I might be a big guy but at heart, I’m a teddy bear. I felt small, scared and on some level – ashamed.

I will never forget the day my wife Sonia sat beside me on my hospital bed. She padded my knee. Held my hand. Hugged me tight. And told me to sit up straight and get my game face on. Yes, our lives with kidney disease would be different. No, our lives were NOT over.

A lot of people panic when they’re told they have to go on dialysis. Dialysis is a game changer, for sure. But my wife Sonia and I chose to see dialysis as a way of healing my kidneys. As a way of getting me healthy and strong again. Day by day, step by step.

There was one small problem. I was destined to remain in hospital for two months. So we started with small steps. I got out of bed – a HUGE victory. Walked across my tiny hospital room. Another HUGE win. Day by day, step by step. This became my new mantra.

I will not lie. Every day was a struggle. And every day was a gift to keep on fighting. Yes, I’d been reduced from lifting weights at the gym to stumbling around like a toddler, learning to walk. And like a baby, I learned the importance of taking naps, of letting my body rest and recover.

Having kidney disease has challenged me. So have the 14-plus surgeries I have endured. But all of my mental and physical battles have been easier because of the love and support from Sonia and our children. Day by day, step by step.

Just as my wife promised, bad news did not dim the lights and keep our family in darkness forever. Dialysis treatment changed everything for me and my family. Finally, I was strong enough to work out again and start rebuilding my body and my health. One slow-and-stumbling gym visit eventually led to a five-day-a-week routine. Day by day, step by step.

Sonia and I started traveling, camping and going on day trips. My dialysis equipment always accompanied us, sort of like a third-wheel chaperon. In less than a year, my kidney health rose from three percent to 29% percent functionality. (Healthy young people with healthy kidneys have 100% kidney function.)

Today, five years later, I am “too healthy” for a kidney transplant, which some days makes me laugh, especially as I try to keep up with my new grandson. I am living my best life with kidney disease. I am in the best shape of my life mentally and physically.

Has my life with kidney disease been easy? No, definitely not, but I am grateful for the chance to keep fighting. Day by day, step by step.

I want people living with kidney disease – maybe that’s you or someone you love – to know that kidney disease is not all bad news. Life is not over. Life does not end. You can achieve your goals, live actively and with passion. A best life is still available to you and those you love.

My journey so far has taught me that kidney disease is part of my life, but kidney disease does not define my life. You know who defines my life? Me. I do. I define how I live. What I choose to do. How I choose to take care of myself so I can take care of the people I love.

How do you live your best life with kidney disease? Day by day, step by step.

We invite you to discover more lived experiences and to learn how The Kidney Foundation is with you.