Everyone Benefits from the Knowledge Chain

By Yvonnzier Staley

It has been my practice to develop a knowledge chain by discussing my kidney disease with everyone I meet. If you share information about your kidney disease with the world, others can gain knowledge from it, and you will learn more, too.

Every patient is a walking encyclopedia, with a wealth of information—about employment, working at home, previous patients known, and history of dialysis. I read as much as I can about kidney disease and its treatment, and talk to others, trying to obtain information that can benefit me. Then I pass it on to other patients who may not be as vocal.

I have gotten so comfortable in dialysis that I look forward to seeing my extended family (the patients) at the center. I feel that among everyone in the world, they (the patients) are actually the individuals who really understand what I am going through daily. I can discuss situations with them and they readily provide solutions to my problems that help me to better handle new conditions as they occur. For example, a dentist on dialysis told me that the timing of my high blood pressure medicine is very important so that my pressure would not drop to critical levels while on the machine.

I also view my doctors and medical staff (technicians, social workers, nutritionist, nurse, etc.) as part of my extended family, since they have the most knowledge of my illness. I tend to let them know about every ache and pain, and learn from them, since each patient’s reaction to the machine and recycling of blood differ.

When I’m on dialysis, I make a conscious effort to stay alert, not sleep, and be an active participant in my medical treatment. I ask questions about the machine and the actions of staff. For example, I might ask the nurse, “What are you putting into my lines?”

It’s important to have a determined, positive attitude. Don’t think of yourself as a victim. Look at this experience as one in which you must learn from and help others. My experience as a patient is one of continuous growth and development in learning as much as I can about my disease to improve my quality of life.

Permission received to post the following information:

Name: Yvonnzier Staley
Washington, DC
Time on dialysis: 2 years
Treatments used: In-center hemodialysis
Work/other activities: Classification specialist with federal government
Volunteer activities: Speaker at panel session on “Supporting ESRD Patients and Families in the Employment Setting,” at the National Kidney Foundation Clinical Nephrology Meetings, Spring 1999
Date: July 1999