As we mark Kidney Health Month and World Kidney Day 2018, we are pleased to share the story of Barb LeGay, Anne MacPhee, and Sandi Kidston, three Halifax friends and Can-SOLVE CKD patient partners. Barb, who passed away in June 2017, was a passionate advocate for people living with kidney disease and an enthusiastic member of the Can-SOLVE CKD Patient Council. In memory of Barb and her legacy, Anne and Sandi are carrying on her work of providing patient perspectives to the kidney research community through Can-SOLVE CKD.
Anne and Barb
Anne MacPhee first met Barb LeGay about 10 years ago when they discovered they were neighbours.
“We met through her cat and became the best of friends,” says Anne.
They introduced their husbands and all of them began to spend time together. Anne learned that both Barb and her husband Barry were blind. Barb was also living with chronic kidney disease and had received four kidney transplants since 1977.
“We spent many a night in emergency together with Barb’s health issues,” says Anne. “We also grocery shopped together, clothes shopped together, and did all the vet trips together for her two cats and two seeing eye dogs. When her last dog retired and she was not well enough to get another, she joked that I was her new seeing eye dog.”
As Barb’s friend and caregiver, Anne learned about her many achievements. Barb earned a Bachelor of Arts and a Bachelor of Laws, was called to the Bar, and worked in law-related positions until her retirement in 2010. She was part of the sub-committee that re-wrote the Nova Scotia Accessibility Act. She also served on the board of the Kidney Foundation of Canada, volunteered with Can-SOLVE CKD, was a member of the Canadian Access and Inclusion Project Lawyers Panel and a member of the Halifax Community Health Board.
When Barb’s last donor kidney started to fail, Anne noticed a change in Barb’s appearance with the build-up of fluid, a common kidney disease side-effect.
“I went to visit and wanted her to see her doctor,” says Anne. “She was scheduled to do a conference call that day with the Kidney Foundation, and no way was she going anywhere until that was completed. Later that day, I took her to emergency.
“Over the next four years, my husband and son drove Barb to dialysis three times a week. She was hospitalized many times for complications that come with chronic kidney disease. I was only a phone call away for requests as needed. She never complained, and never felt ‘Why me?’ but soldiered on and made the best of every day. She told me she never worried about herself like she did others because that hospital door was just a revolving door to her. That is how she lived her life.”
“She loved this organization and felt that the patients were treated with such respect.”
When Barb was asked to join the Can-SOLVE CKD Network to provide her patient perspective on kidney research initiatives, she asked Anne to travel with her.
“I was so happy to be her companion and ‘navigator’ as she would say,” says Anne. “She loved this organization and felt that the patients were treated with such respect. She had issues over the years with her care and felt Can-SOLVE CKD was on to something.”
Barb’s dedication to caring about others shone through even in her last hours.
“The night before her death, she said, ‘I have to call Helen (Chiu, Can-SOLVE CKD Patient Engagement Liaison) and tell her I will be out of the loop for a few months. I said, ‘Email her, Barb. That will be fine,’ and Barb said, ‘No, I want to leave a voicemail because I really care and it is more personal than email.’”
“I loved her like a sister, and I’m so happy to be part of this movement,” says Anne who is currently using her insight as a caregiver to serve two volunteer roles with Can-SOLVE CKD. She is a member of the planning committee for the Can-SOLVE CKD Annual Meeting and a member of the planning committee for a special new award to be announced soon.
Anne, Sandi and Barb
Going back in time again to the day after Anne took Barb to emergency following Barb’s conference call with the Kidney Foundation, Anne met Sandi Kidston as she was in the neighbouring hospital room. It turns out Sandi had also been on the same conference call.
Sandi has polycystic kidney disease and was on dialysis for five years before having a kidney transplant. Sandi’s son also has polycystic kidney disease, and her father and brother both passed away due to kidney failure. Sandi has been a member of the board of the Kidney Foundation of Canada and has held various positions within the deaf community and Atlantic Provinces Special Education Authority as a Consultant for Educational Sign Language Interpreters.
“She is truly to be admired and respected for her contribution to helping those with chronic kidney disease.”
“Barb is the reason Anne and I became involved with Can-SOLVE CKD,” says Sandi. “Barb was treated with dignity and respect as a patient partner and member of the Patient Council. Her words of encouragement for me to join were always around patient-oriented research. She wanted me to see that patients really are treated well and listened to. She was so impressed with everyone.
“Anne and I wish to carry on Barb’s wishes – patients influencing and impacting research,” says Sandi who is now a Can-SOLVE CKD Patient Council member. “We keep in touch with Barb’s husband, Barry, and he is touched by us keeping her memory alive.
“Having polycystic kidney disease myself, I relate to the many obstacles Barb faced and I admire her perseverance,” says Sandi. “I am also experiencing her medical concerns. I wonder how Barb dealt with all that vulnerability and uncertainty? All I know is, she just did. Barb managed her life, medications, special diet and the ongoing health interruptions life often presented her with an ‘I have things to do’ and continued her pursuit of justice, advocacy for patients and good times with hubby. She is truly to be admired and respected for her contribution to helping those with chronic kidney disease.”
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