“No one could look at me and tell I was sick”

I’ve lived with Type 1 diabetes since I was 9 years old. I didn’t know how to manage my diabetes in those early years. When I was 18, the hospital told me my kidneys would fail and I didn’t understand what that meant. It was 1980 and there was no internet to provide answers. I sought out what I could from my local library.  Despite my efforts to maximize my blood glucose control my kidneys eventually failed about 20 years later. No one could look at me and tell that I was sick. I feel this resulted in difficulties throughout my healthcare, including delaying my end stage renal disease (ERSD) diagnosis by years. 

I was on peritoneal dialysis for only a couple of years when a close friend volunteered to be a donor for me. I was grateful to receive her kidney but unfortunately, I did not find myself getting better. My new kidney functioned poorly from the start and I was perpetually fatigued. Even worse my fatigue wasn’t being acknowledged. My kidney function continued to deteriorate. At best, my first transplant was a limited success.

My way of life was altered so much from what I once knew. In addition to the impact on my career and social life, my extensive volunteer work with Habitat for Humanity also came to an end.  My home renovations were halted midway, and I lived in the chaos of a house in disrepair for many years. Although I took a two-year leave of absence from my job in 2010, I never really recovered.  In 2015, after problems with my heart, I left my job permanently and gave up on my home. I retired in 2020 at the same time I started peritoneal dialysis for the second time. 

In the past I was fit and active, and as my health deteriorated so did my ability to exercise. In February last year, I watched a webinar presented by The Kidney Foundation. During a break, they went through exercises presented by the Active Living for Life program.  While on dialysis my energy levels began to improve, and I was looking to become more active, but I didn’t really know what my body could handle as a kidney patient. I joined the class and have been thrilled with it ever since. 

I received my second transplant in May 2022 through the paired exchange program. My wife gave one of her kidneys to someone, and I am extremely grateful to have received a new kidney.  This second transplant has been completely successful and allowed me to start rebuilding my life after essentially 25 years.   

As part of my rebuilding effort, I continue to participate in and highly recommend Active Living for Life to anyone who wants to improve their health. It’s delivered online via Zoom. It’s easy to join and is free to both CKD patients and caregivers. The supervised classes are structured with a warmup, a range of exercises and stretching, followed by an education session and discussion at the end.  What makes this ideal for chronic kidney disease patients is every exercise is presented in various ways to allow anyone, with varying abilities, to participate.  Sessions are recorded, so you can catch up on your own time as well. I truly believe it’s in everyone’s best interest to be active and it’s a small commitment that can result in big changes. Active Living for Life is now a cornerstone of my recovery and continues to help me get the most out of life.

Register for our Active Living for Life program at www.kidney.ca/programs/activeliving.