2024 PKD Patient Forums | Videos
These events were recorded on September 7 (Atlantic), October 5 (Central), and October 8 (Western), 2024.
Our 2024 virtual PKD Patient Forums featured three different, regional nephrologists sharing information and answering questions about polycystic kidney disease, along with three regional PKD patients sharing their personal journeys with PKD.
Some of the questions addressed in these presentations:
- How often will I see my kidney doctor, and why might that change?
- What symptoms should I look out for and tell my kidney doctor about?
- What can my health care team tell me about how my PKD will get worse over time?
- What should I ask my kidney doctor during my appointments?
- Why does my kidney doctor order certain blood tests, and what are they looking for? What are good results? When will my kidney doctor want to see me more often based on my test results?
- When should I start thinking about finding a living kidney donor?
- When will I be able to go on the kidney transplant waiting list?
- When should I start thinking about dialysis?
- Is there anything I can do to slow down my cyst growth and PKD besides taking Tolvaptan?
- Who can take Tolvaptan? Are there certain kidney test results (eGFR) or ages that make it work best?
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Watch the Atlantic Canada Forum
About the Speakers
Dr. Steven D. Soroka is Professor of Medicine at Dalhousie University, and a Nephrologist in the Department of Medicine within the Nova Scotia Health. He received his medical degree at the University of Saskatchewan in 1990. He has had several leadership positions at various levels of the health care system. He was a medical advisor to the Nova Scotia Provincial Renal Program, Physician Lead of the Capital District Renal Program, VP of Medicine for Capital Health, and the Executive Medical Director of the Central Zone of the Nova Scotia Health Authority. He was also the medical director of Nephrology clinical trials for 12 years. He was a medical advisor to the Nova Scotia Chapter of the Kidney Foundation from 2006 – 2012.
Dr. Soroka has been a surveyor for Accreditation Canada since 2008, and the Senior Medical Director for the Nova Scotia Health Authority Renal Program and Pharmacy Services since 2016.
In 2022, he was acknowledged as a Patient Safety Leader champion and was the recipient of the Nova Scotia Health 2022 Making Waves Award Program Leadership Excellence Award – Physician Leader. In March 2023, he was also awarded the Queen Elizabeth II Platinum Jubilee Medal (Nova Scotia).
Brenda MacKenzie is a PKD patient and kidney transplant recipient who co-founded the Halifax Chapter of the PKD Foundation of Canada, and the Halifax Walk to END PKD.
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Watch the Central Canada Forum
About the Speakers
Dr. Navdeep Tangri is an attending physician and Professor in the Division of Nephrology, Department of Internal Medicine and Department of Community Health Sciences in the Rady Faculty of Health Sciences at the University of Manitoba. Dr. Tangri’s research program is multidisciplinary and focused on improving clinical decision making for patients with or at risk for chronic kidney disease. He developed and validated the Kidney Failure Risk Equation (KFRE) to predict the need for dialysis in patients with CKD, and is presently engaged in implementation efforts with guidelines, lab providers and EMRs to increase the uptake of the KFRE worldwide. In addition, Dr. Tangri leads large observational studies and randomized trials in CKD, and is developing the next generation of prediction models to help transform CKD care. He has published over 350 manuscripts, presented at multiple national and international scientific meetings, and is a recipient of the CIHR New Investigator Award and a CIHR Foundation award.
Tetyana Walker is a PKD patient living in Winnipeg, Manitoba. She founded the Winnipeg chapter of the PKD Foundation of Canada. She is passionate about raising awareness and funds for PKD research, so that her children may someday benefit from better treatments or a cure for PKD.
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Watch the Western Canada Forum
About the Speakers
Dr. Micheli (Mike) Bevilacqua is a nephrologist with additional training in health administration. His clinical nephrology practice is based in Surrey, British Columbia and he is involved in several administrative roles with BC Renal.
He is the Chair of the Provincial Kidney Care Committee which coordinates care delivery for over 15,000 British Columbians living with chronic kidney disease, the Medical Lead for the BC Polycystic Kidney Disease Network which aims to optimize management of PKD in BC and the Co-Chair of the Transplant First Committee aiming to improve access to living donor kidney transplantation.
Dr. Bevilacqua also works with BC Renal on other initiatives such as improving the delivery and support of home dialysis therapies. When not doing clinical work or at BC Renal, Dr. Bevilacqua is involved in research with specific interests in care of patients with polycystic kidney disease, knowledge translation, systems improvement and evaluating care delivery and is also actively involved teaching at the medical school and residency levels at UBC.
Kelly Konieczny is a PKD patient living in Alberta. She is a passionate advocate for living organ donation, and is currently seeking a living kidney donor.
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