My name is Mary Beaucage. I’m from Nipissing First Nation, outside of North Bay Ontario. I work in retail management, opening stores, recruiting, hiring and training, analyzing and forecasting sales.
I am a type 2 diabetic. As a result, my kidneys were affected. Diagnosed with End-Stage Renal Disease (ESRD) in June 2013, I started dialysis immediately, 4 hours-3x/week for 2 years.
I had several severe infections including a severe staph infection which hospitalized me for 3 weeks and a blood infection while visiting my sister in Calgary. Upon returning from a hospital stay while I was there, I had a PICC line and an 8 week regimen of IV antibiotics.
I find I had to do a lot of my own research to be my best advocate. I started my journey at stage 5, I wasn’t prepared beforehand. I took an active role in my care, and learned what I could about the machine I dialyzed on, as well as my diet and fluid restriction. I worked hard to maintain some exercise regimen, mainly walking when I had some energetic days. I tried to continue working as I started dialysis, but that lasted less than 3 weeks, when I had my staph infection. It was then I realized I wasn’t wonder woman, and something had to give.
My cousin, Janice Pulak, from Thompson MB, went through testing to see if we were a match. Thankfully, after a year everything worked out, and I had my living donor kidney transplant on March 24th, 2015.
I am passionate about educating and advocating, and as I go through my healing journey, I’m finding strength in talking to others, especially in the aboriginal and northern communities. I became involved with Can-SOLVE CKD by referral, based on my involvement in the living donor initiative. Being part of research level and feedback workshops has been very meaningful to me.
These have been key motivating factors for becoming involved with Can-SOLVE CKD.
As an advocate and caregiver for family members affected by Polycystic Kidney Disease, I have seen firsthand the medical and hospital care that is provided for CKD patients and have believed that there can be better, more effective health care models based on patient-focused research. I have been extremely impressed with the approach and structure of the Can-SOLVE CKD initiative since being asked to participate as a patient representative.
All research projects and funding proposals are not only being vetted by clinicians and researchers but more importantly with the involvement of patients and caregivers, through a patient-focused “lens”. This ensures that research outcomes will be more directly linked to the priorities that have been articulated by CKD patients. Based on these research initiatives, funding bodies will be assured that their investment will lead directly to patient outcomes and result in a significantly greater “bang for the buck”.
Based on my involvement with Can-SOLVE CKD, I am now, far more optimistic that the funding, research and outcomes will dramatically improve the quality of life for CKD patients and caregivers.
At 18 years of age, I was diagnosed with Chronic Kidney Disease (CKD). My primary disease process is Focal Segmental Glomerulosclerosis (FSGS); I have been on hemodialysis for over 27 years, and on home hemodialysis for the past 15 years. I have had two living related kidney transplants, from my Dad and from a cousin. Both transplants failed immediately on the operating room table with extremely aggressive reoccurrence of FSGS in the transplanted kidney. At this time, I am not on the transplant list, as it is believed that the same outcome will occur as with the first two transplants.
I work full time as a Senior Manager at the Toronto Stock Exchange. I workout on a regular basis, including yoga, to maintain my overall health. In the winter, I curl competitively, reaching provincial finals twice; in the summer, I sail and golf. My wife and I also like to travel, we enjoy discovering new places. We have travelled to almost every province in Canada, over a dozen cities in the US, several locations in the Caribbean and many countries in Europe. Beyond the additional complexities of booking travel like everyone else, part of our travel planning includes finding and arranging a local dialysis unit at our destination.
I have recently become active with the Kidney Foundation of Canada – Ontario Branch, as a Peer Support Counselor. I believe that having access to a network of like-minded, progressive patients who have a keen interest in living a productive life, despite being diagnosed with CKD, is critical. I am part of a roster of several dialysis patients that are available to be matched to new patients and have spoken publicly at York University on risk factors and treatment options for CKD. I am also a standing member of the Ontario Renal Network (ORN) Patient and Family Advisory Council (PFAC).
I am a proud Anishinaabe woman, originally from Northwestern Ontario, and now living in Winnipeg, Manitoba. In late 2010, I was diagnosed with Nephrotic Syndrome. My family physician first noticed some irregularities in routine medical tests and sent me to a renal specialist. After a referral to a renal specialist and a kidney biopsy, I was diagnosed with Idiopathic Membranous Nephropathy.
Although I will admit that it took a long time (summer of 2012) for me to feel better, I was fortunate that in early 2012, my albumin/creatinine ratio returned to normal. Living with kidney disease and knowing that at any point a relapse can happen, I decided to spend time with the Elders in my community. I also visited an Indigenous healer who gave me some traditional medicines. My family was very supportive, and with two sisters as nurses, it was helpful to understand the medical jargon. During this time, I was able to maintain a positive outlook on life and did all I could to get better.
What I found most fascinating about my journey is my chance to be part of something that will change the culture and focus of how we deal with those with CKD. When I was asked to attend the Can-SOLVE CKD workshop in June 2015, I was honoured and humbled to be part of this exciting initiative. It is my chance to give back to my community and to those who assisted me in dealing with my disease. I believe that the Can- SOLVE CKD network research projects can change the face of CKD for all by involving and including the patients and their caregivers in this process.