February 26, 2018

February 2018 PKD e-News


Welcome to the PKD Foundation of Canada's February e-News! Here you will find information important to helping you take action in your journey with PKD. 


March is National Kidney Month!

Kidney Month is recognized in March across Canada and the United States. We spend this time raising awareness of the importance of our kidneys to our overall health, and to reduce the frequency and impact kidney disease and its associated health problems have on an international level. We encourage you all to get out there and share your PKD journey with as many people as possible!

This year we have a Facebook frame that you can add to your profile picture to show your support throughout the month of March...and the rest of the year! Add the teal #ENDPKD banner to your profile picture here.



Follow us on FacebookTwitter and Instagram to share stories and facts throughout the month that will help spread awareness of PKD and the importance of keepin

g our kidneys healthy!


Save the Date: March 8 is World Kidney Day
As part of National Kidney Month in March, World Kidney Day is a global awareness campaign aimed at raising awareness of the importance of our kidneys. This year's theme focuses on women's health, which you can read more about here.
World Kidney Day and International Women’s Day 2018 are commemorated on the same day this year, offering the opportunity to highlight the importance of women’s health and specifically their kidney health.



Grand Opening of the Ottawa Hospital Eastern Ontario Cystic Renal Disease Centre of Excellence!

On February 12, Executive Director Jeff Robertson and Ottawa Chapter & Walk Coordinator Gina Hedges and had the great honour of participating in the grand opening of the Ottawa Hospital Eastern Ontario Cystic Renal Disease Centre of Excellence!



This centre will deliver essential specialized care for PKD patients in Ottawa and its surrounding region and will be an important fixture for continuing research and education on PKD!

Dr. Pierre Brown, Dr. Mohan Biyani, and Dr. Ayub Akbari will serve as the three experts who will provide care for PKD patients at the clinic.

Check out more photos on our Facebook page here.




Upcoming Toronto Chapter Meeting: New Guidelines for Optimal Management of ADPKD in Adults
Sunday, March 11, 2018 from 2:00PM - 4:00PM

North York Civic Centre
Community Room #4
5100 Yonge St
North York, ON M2N 5V7


Speaker: Dr. Daniel Sapir, MD.

Meeting Details: Join us as Dr. Sapir walks us through the recently published guidelines on the optimal management of ADPKD in adults. You will have the opportunity to learn more and ask your questions about:
  • The role of genetic testing
  • The role of renal imaging
  • Predicting the risk of disease progression
  • Pharmacological treatment options for ADPKD
  • Specific recommendations for the treatment of ADPKD with tolvaptan
Ensure you are receiving all Toronto Chapter updates by emailing us a request to add you to the Toronto Chapter email list! You can also stay up to date by following the chapter on Facebook.


Upcoming Calgary Chapter Meeting: Eating Healthy with PKD
Tuesday, March 20, 2018 from 6:30PM - 8:30PM

Nicholls Family Library
1413 33 St SW
Calgary, AB T3C 1P2


Speaker: Sylvia Hui - Renal Dietitian, Alberta Health Services

Meeting Details: Join us as Sylvia Hui walks us through how to eat healthy with PKD, focusing on a kidney-friendly diet and lifestyle. You will have the opportunity to learn more and ask your questions about:
  • The importance of a kidney-friendly diet
  • Which foods are good / bad
  • Tips to finding the right foods to eat
Ensure you are receiving all Calgary Chapter updates by emailing us a request to add you to the Calgary Chapter email list! You can also stay up to date by following the chapter on Facebook.



In the News: Game-Changing Kidney Transplant Technique Developed at Toronto General Hospital

For the first time in North America, a donated kidney has been successfully transplanted into a patient using a new system Dr. Markus Selzner, a transplant surgeon at the University Health Network's Toronto General Hospital, helped pioneer. It’s the result of four years of work by the surgeon and a team of scientists from the University Health Network, Canadian Blood Services and SickKids Hospital.

The team has developed a machine and kidney support system that keeps the organ healthy by mimicking conditions inside the human body.

The procedure works by storing a kidney in a special mixture of nutrients at body temperature, which helps restore the kidney before it is transplanted. Doctors can also monitor the organ prior to transplant.

Read the full article and watch the accompanying video about the "ex-vivo" machine here.


PKD Health Notes: Finding Balance with Proper Portions

As a kidney patient, your diet is an important factor in your everyday life. Coming into the new year, don’t lean on fad diets to get healthy—think in terms of portions instead! Correctly portioning the foods and beverages you eat and drink is one of the most effective ways to not only trim excess calories from your diet without dieting, but to also stay true to your kidney diet. Monitoring and evaluating portion sizes can even help you work your favorite foods into your kidney diet plan. It’s all about finding a balance.

Check out the full blog post for tips on managing your kidney diet.


PKD-Friendly Recipes: Turkey Vegetable Soup
With winter weather persisting, it might be cold outside, but you don’t have to be! If you’re a fan of keeping it cozy with soups and stews, then you have to check out this hearty recipe for turkey vegetable soup.


Remember to consult your doctor or dietitian about what recipes and practices are best for you at your stage of PKD.




Upcoming Ottawa Chapter Trivia Fundraiser & Social!
Sunday, March 25, 2018 from 1:00PM - 4:00PM
D'Arcy McGee's Irish Pub
260 Centrum Boulevard
Orleans, ON K1E 3P4

Event Details: Are you someone who likes to show off your knowledge or random topics to friends? Or just likes to gather and have a laugh? Then come join the Ottawa Chapter for a family-friendly afternoon of trivia to raise funds for critical Canadian research of PKD!

Bring your smartphone or tablet to play along through the Kahoot! app. To download the app ahead of the event, visit Google Play or the Apple App Store.

All proceeds will benefit the PKD Foundation of Canada. Food and drinks can be purchased directly from D'Arcy McGee's Irish Pub as desired.


Check out full details on our website. We hope to see you there!


Ensure you are receiving all Ottawa Chapter updates by emailing us a request to add you to the Ottawa Chapter email list! You can also stay up to date by following the chapter on Facebook.



BLOG: PKD Will Not Beat Me - Even the Sun Needs Downtime

In Valen's blog post, she takes the time to reflect how important it is to find balance between the responsibilities of your condition and of caring for your self:

"“Wow—so much to do—don’t get bogged down with the burden of disease. Try to keep your composure and quality of life.” This was the start of a message I recently received from my nephrologist. This great advice, while sometimes easier said than done, really spoke to me since I have felt quite consumed by my recent diagnosis of PSC – primary sclerosing cholangitis."  Keep reading.

You can find this post, and others written by Valen, here.

PKD Will Not Beat Me is an inspirational place for those seeking a positive environment to meet others with polycystic kidney disease (PKD) - to share stories, to ask questions and to make life-long friendships, encouraging each other to live positively along the way! PKD Will Not Beat Me is written by PKD patient and transplant recipient Valen Keefer.