Can you tell us about your journey with chronic kidney disease?  

I developed chronic kidney disease after receiving a liver transplant 29 years ago, from long-term use of immunosuppressant medications. In 2024, I started dialysis earlier than expected due to sepsis. I’m currently on home hemodialysis and have been waiting for a combined liver and kidney transplant since October 2024.  

What do you enjoy about being a patient partner with STOPMed-HD? 

I believe it's important for our medications to be reviewed on a regular basis and, if we can, wean off of them altogether if they’re not needed, as this is better for our overall health. 

What other experience do you have as a patient partner? 

I have been a very active patient partner for over 15 years. Currently, I serve as the Patient Co-lead for Theme 5 (Long Term Outcomes and Patient Family Donor Platform) with the Canadian Donation Transplantation Research Program (CDTRP) and am a member of the Executive Committee of the Patient Advisors Network. I’m currently involved in research related to holistic care, integrated care, people centred care, digital health, EDI, and AI. 

Is there anything else you would like to share? 

I've been with my husband for 46 years, and this September will be our 38th wedding anniversary. Besides being my best friend, he is an amazing caregiver and supports the work I do as a patient partner. We live together in Gravenhurst, Ontario.    

Can you tell us about your journey with chronic kidney disease?  

My kidney disease started very suddenly in November 2018. I wasn’t even aware that my kidney function was declining until I became very ill and was hospitalized with a GFR of 6%. I spent six weeks in the hospital and started dialysis three times a week. It felt like everything changed overnight, and all of a sudden, I was no longer able to do my usual activities and routines. Since starting dialysis, I’ve been very careful about my diet and fluid intake, and over the last two years I’ve been able to reduce my dialysis treatments to twice a week. I’ve also worked with my pharmacist to cut down on some of my medications. I didn’t really think there was an opportunity to fine-tune my medications until I got involved in this study.  

What do you enjoy about being a patient partner with STOPMed-HD? 

I appreciate having the opportunity to share my experiences, thoughts, and questions, and I value that patient partner input is even sought after to begin with. When I first joined, there was a lot of information to absorb, but overall, I’ve enjoyed being involved in different parts of the study.  

What other experience do you have as a patient partner? 

I’ve been involved in a number of patient partner roles through BC Renal, including the Patient and Engagement Advisory Council, Pharmacy Committee, Emergency Management Committee, and Executive Committee. I’ve also participated in research projects outside of BC Renal, including a study exploring hand dexterity in people receiving dialysis.  Beyond kidney care, I’m involved with the DEI-A Committee at Northern Health Authority and am currently on a committee to review abstracts for the Health Quality Forum. I’ve also contributed to national research projects, and it’s been really interesting to see how research and ethics processes differ across provinces.  

Is there anything else you would like to share? 

I live in Prince George, British Columbia with my five-year-old tuxedo cat named Penny. I enjoy board games, reading, and writing, and I serve on the Board of Directors for the Northern BC Writers’ Festival.  

Can you tell us about your journey with chronic kidney disease? 

My kidney journey began in 2023 when I unexpectedly went into kidney failure due to a rare autoimmune disease called Anti-Glomerular Basement Membrane (Anti-GBM) disease. The diagnosis changed the course of my life and inspired me to become an advocate for advancements in kidney research. I spent 16 months on hemodialysis before receiving a life-changing kidney transplant from my cousin, Jay, on September 12, 2024. 

What do you enjoy about being a patient partner with STOPMed-HD? 

I enjoy connecting with researchers, healthcare professionals, and fellow patient partners who are working to advance kidney care. It's rewarding to know that my lived experience can help inform research and ensure the patient perspective is reflected in important healthcare decisions. 

Is there anything else you would like to share? 

Receiving a transplant has given me the opportunity to get back to doing the things I love, including running and swimming. I'm excited to represent the transplant community at the World Transplant Games next year and to continue advocating for kidney research and organ donation.