“I’m Waiting for a Kidney Transplant. Again.”

When June Jones says she wakes up early most days, she means before-the-birds early. The retired grandmother of four is up before dawn (sometimes as early as 2 a.m.) several days a week for dialysis. She crawls out of bed and creeps down the hall to her spare bedroom, where she has a hemodialysis machine set up in her Ottawa home. Jones hooks up the chest catheter, lies down and starts a four-hour-long treatment. “I usually can’t sleep,” she says, “but I rest my eyes and listen to quiet music, or I read a book.”

Jones, who is 61, has become an expert at managing kidney disease and, over the past 33 years, she has tried almost every treatment available to her.

In the spring of 1989, a year after her son was born, she recalls feeling really run down, even for a busy young mother. Her doctor eventually sent her to a nephrologist, who diagnosed her with IgA nephropathy, a chronic kidney disease. Over the next decade, Jones was able to manage her condition with a range of medications— until 1998, when her kidneys failed. Six months later, she was fortunate to get a kidney transplant. “That worked really well for almost 15 years,” Jones says. Over time, though, the disease came back, and nine years ago the new kidney failed, too.

Since then, Jones has been on dialysis, waiting and hoping for another transplant. Unfortunately, it has proven extremely difficult to find a match due to her unusually high antibody levels.

For now, Jones is set on using her experience with the disease to help others. She volunteers with the Kidney Foundation of Canada’s peer support program, sharing advice with other patients. “People can get down about dialysis, but I say you can’t let it rule your life, because it will if you let it.” Jones works hard at keeping her own outlook bright, too. “If I wasn’t on dialysis, life would be so much better—but still, life is good,” she says.

Next: Everything You Don’t Know About Kidney Disease (But Should)