3 minute read
A Family Affair
Life doesn’t stop because of dialysis
by Trish Reynolds
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Shortly after the birth of her second child, June began feeling run down. As her physician and other specialists searched for clues, it was through one of the many tests and a visit to a nephrologist that she learned that she had a form of kidney disease called IgA Nephropathy. The diagnosis came out of the blue.
June was shocked to learn that dialysis would become her reality, sooner rather than later. As the need for dialysis became imminent, she reached out to her local Kidney Foundation with a request to be connected to people on dialysis or living with a transplant. Her goal was to learn as much as possible about the potential treatment options. Those conversations were critical in June’s decision to do peritoneal dialysis. “I remember one of the volunteers who was so honest and would answer anything I asked,” said June. She vowed that if a formal peer support program ever started in her area, she would be that same source of support to others; willing to be honest and answer any questions, no matter how difficult.
The support of June’s family has been pivotal and has helped her stay grounded throughout her 33-year journey with kidney disease. “When I was first diagnosed, I had young kids and my husband did a lot of traveling as he climbed the corporate ladder. I did my treatments Fall 2022 / Kidney Living / 11
and just continued to live my life. I realized that I couldn’t stop my life because of dialysis.” Kidney disease is a part of June’s life, but she does her best not to keep it at the forefront. “Things happen, there are bumps along the way all the time, and you just learn to deal with them. We’re [people living with kidney disease] pretty resilient.”
Six months after starting dialysis, June received the call for a kidney transplant. The new kidney made it possible for the family to travel, watch their children grow, and move south of the border for a period of time. “People have this misconception that if you have a transplant, life goes back to normal. You are not doing dialysis, but you’re on some heavy-duty medications that come with their own side effects.” In 2013, June’s kidney began to fail. She returned to peritoneal dialysis for almost eight years and she is now on home hemodialysis. June has spent almost a decade back on the wait list for a new kidney.
June joined her local PFAC (Patient and Family Advisory Council) and became involved with The Kidney Foundation’s peer support program. While she is thankful for her amazing support system: husband, children, grandchildren, and numerous siblings, she has realized through her connections with others, that not everyone is so lucky. “I really recommend peer support for people who are feeling alone, and don’t have anyone to talk to. Starting dialysis isn’t easy and it’s natural for people to worry, but I really try to tell the people that I talk to, to take it all in stride, because you can handle it.”
Being a peer support volunteer has helped June gain a new perspective and become more empathetic. “It has really opened my eyes to see that a lot of patients are alone, and many are struggling.”
Kidney disease has no doubt had a lasting impact on June and her family, but the Jones family endeavours to now make a positive impact on the future of kidney disease research.
The Jones Family Foundation recently made a transformative gift to support The Ottawa Hospital, with $5 million of that gift earmarked for kidney research. Research has the potential to change lives through early detection, better treatment options and ultimately a cure. “We are hopeful that this gift will make a difference in the lives of people living with kidney disease. We may never see the full impact of the research, but it is our hope that our children and grandchildren will.”
