Patient Stories

Stella, Toronto

My name is Stella , I am 45 years old and I have been dealing with PKD my whole life.

My mom had a double nephrectomy and was on dialysis for 11 years before she passed at the age of 51.

I was only 17, and at the time, we didn’t know PKD was a genetic condition.

I was diagnosed by chance when I visited the ER due to severe abdominal pain when I was 22 years old. Together with a kidney stone, they found I had polycystic kidneys and liver.

The diagnosis was devastating.

I am a mom to 2 amazing boys, both diagnosed with the same genetic condition.

I started developing symptoms about 5 years ago. Even though my kidney function was great, I had severe flank pain. I was not able to sleep in a supine position or bend down to put on my socks or tie my shoes. Even eating a regular-sized meal would give me great discomfort.

Most of the day-to-day activities had become a challenge, including going to work full time. I had started to rely on pain medication just to be able to sleep a few hours at night. I did not want my life to continue like that.

It was then that my wonderful nephrologist Dr. Nathoo referred me to Dr. Pei and his team at Toronto General Hospital. From the first meeting, nearly 3 years ago, I felt very hopeful. They listened to me, recorded my family history and explained several options that could potentially help in reducing the pain I was in.

I had a procedure called Foam Sclerotherapy, using an experimental substance, performed on both kidneys in October 2016. The team was available every step of the way with any questions and doubts I had regarding the procedure.

I remember all the back and forth emails with Lily, Dr. Pei’s research assistant. She is one of the most caring person I have ever met in the medical field. She was there at every meeting, every MRI and follow up appointment and made me feel like I was in the best hands possible.

I have now been in the PKD program for 3 years, taking Tolvaptan for the past 5 months, and my pain has significantly decreased. I am now living a relatively normal life.

I have true hope that my journey and the one of my sons in managing this awful disease will be much easier because we now have this amazing program and team to rely on.

I would highly recommend anyone dealing with this disease to join the PKD program. I personally found answers, solutions to my problems, explanations, support and understanding.

I feel, since joining the program, that I have been given a second chance at living my life and I cannot thank Dr. Pei and his team enough for all they have done for me.

A special thank you to Lily Shi, Crystal Quist and Carmela Cirillo for your kindness. You truly are special.