Patient Stories

Steve, Toronto

My name is Steve, I am married with two children who are young adults. I have led a very active life and flourishing career as an Executive in the Information Technology industry. My professional career had me traveling throughout the globe on a weekly basis, including long term international assignments.

My maternal grandfather and his siblings, my mom and her siblings, my brother and I, and both of my children had/have PKD. I was first made aware of PKD as a caregiver to my mom, before being diagnosed in my late twenties. At first I did not understand the seriousness of these disease and made little effort to alter my life style or diet. I was overseen by the nephrology team at TGH on a regular basis. At one point, both my mom and I had “back-to-back” appointments, allowing me to be an activist for my mom, followed by my own review and assessment. It was not until a few years back that my kidney function decline had accelerated and the discussion of dialysis began to surface, by this time my mom had already began dialysis at the age of 73. This was the “eye opening” event that made me give this disease the respect it deserves.

I have been monitored by the nephrology team at TGH for approximately 20 years, initially with Dr Richardson, and the past 2 years under the direct care of Dr York Pei. My overall experience with PKD program has been excellent for both the information exchange and advancements of new procedures and medications. Dr. Pei and his clinical team are very diligent and caring with nothing but the patient’s best interest in mind. Their ability to communicate changes and advancements within PKD are excellent, especially Dr. Pei, whose approach is very objective with underlying supporting data. When Dr. Pei discovered that I had three generations of PKD family members alive and in Toronto, he took them all under his review and program, hoping to give further genetic insight to this disease.

To anyone contemplating joining the program and ultimately the fight against PKD, all I can say is do it sooner rather than later. At first I thought, why subject myself to this “poking and probing”, My kidney function would not be restored and eventually I was looking at dialysis or transplant, thus why do it? Then I realized that the research from all the participants can help not only my children or grandchildren, but all others who are battling this dreaded decease.

The increased visibility and understanding of PKD has forced me to take a hard look at my life style, diet and overall wellness and as a result I am feeling much better. There are challenges with the side effects of a new medication; however, if the medication elongates my natural kidney function then it is well worth it. And more importantly if the research give us a better understanding of PKD, dealing with PKD and ultimately a permanent treatment for PKD patients, then this is ALL WORTH IT!