Hello, my name is Susan. My journey with PKD began in my 20’s, when I was told I had a few cysts on my kidneys. I was told that having a few cysts was not unusual, and not to be concerned.

Then in my early 40’s I had an abnormal blood test result during a routine doctor visit, followed by further testing which led to being diagnosed with ADPKD. I shared this difficult news with my family, which ultimately resulted in my dad, brother and son being diagnosed with the disease.

Even though the news was difficult to hear, I do believe that being diagnosed has brought a desire to learn more about PKD, and a renewed commitment to healthy lifestyle choices to support my kidney health, and my family’s.

Some people look at me and say, "You look fine, how can you be sick?" I try to explain that the issues are on the inside right now. It's a multi-system disease. It's complicated.

Some days are tough with PKD, there's no doubt about that. Doctor visits, and anticipating test results, continue to be a source of anxiety. Sometimes living with a life-threatening disease gets overwhelming, and that’s when I head out to the mountains where I can connect with nature, and rejuvenate my body and soul.

The mountains are a place of stunning natural beauty with their rugged peaks, dense forests and sparkling streams. When I am in the mountains, I feel a sense of awe and wonder at the majesty of the landscape that surrounds me. It is where I feel at home and at peace with the world.

I enjoy heading out to the mountains year-round hiking and snowshoeing with my hiking group. The forests and mountain vistas take on a magical quality when blanketed with fresh snow!

I think naturalist John Muir said it best.  “The mountains are calling, and I must go.”

It was my dad who instilled in me a love for nature. He felt a deep connection and respect for all creatures, great and small.

Sadly, my dad passed away from kidney failure in March of 2020.

I am committed to honouring his memory by sharing my story and supporting my local PKD chapter to draw awareness to PKD, and advocate for much-needed research funding and family support for those affected by this disease.

I am grateful for the wonderful team of medical professionals, family, and friends who continue to support me on my PKD journey, and I remain hopeful for a future without this life-threatening disease.

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