Ontario Renal Network | Reseau Renal de L'Ontario

Deb B

Deb B.
Deb B. has had diabetes for more than 35 years. Her kidneys failed in 2013. Nocturnal peritoneal dialysis gives her the freedom to continue working with seniors and young people, and to volunteer.

Deb B. wants to talk about chronic kidney disease. More importantly, she wants people to listen to what she and other CKD patients have to say.

She wants her healthcare providers to understand how surprised she was when her kidneys suddenly failed as the result of diabetes-related complications and how frustrated she was at having to crash start hemodialysis instead of being able to go straight to peritoneal dialysis.

She wants her doctors and nurses to take a few extra minutes to talk to her about more than her lab results and medications. “Sometimes, I think they are so focused on giving patients medical information that they can forget there is a hurting and scared human being behind the kidney disease,” she says. “It feels so good when they sit and listen—and really hear—your heartache and loneliness.”

Social workers can be very helpful in this regard, and Deb would like to see them involved in earlier and more often in patients’ journeys. “I know this kind of support takes time and money, but that human touch and voice are so important,” she says.

Friends, while supportive, don’t really appreciate what it is like to live with CKD. “This is an invisible disease. You don’t necessarily look sick, so people may have unrealistic expectations of what you’re capable of doing.” Real understanding can only come from people who are in the same boat. That’s why peer support groups can be a wonderful source information and strength, says Deb.

For Deb, her volunteer work, including participating in the Patient and Family Advisory Committee at her local hospital and speaking to community groups about organ donation, has been tremendously empowering. “It is very healing to speak and have people hear what I have to say. [Working as an advocate] has been a powerful part of my journey.”