Uncertainty is probably the most disturbing aspect of any illness.

Uncertainty is likely to be present at every stage of a disease, from the time of being diagnosed, to coping with ongoing treatment, while waiting for a transplant and during setbacks which may require hospitalization.

Uncertainty and fear about the future are major sources of stress that affect patients and their families over the long term. Sources of uncertainty include unpredictability associated with patients’ health, dialysis treatment, the potential death of the patient or the availability of a transplant. Patients and families have reported that uncertainty is inconsistent. It interferes with the ability to be spontaneous in life.

Many patients and their families experience fear during the initial stages of dialysis. This may come from not knowing how everything will work out and how dialysis and kidney disease will impact their lives. They may be fearful of losing the life they had before becoming ill. In addition, there is often fear of seeing blood being passed through the dialysis tubes into the machine and then back into their bodies, as well as fear of the actual dialysis needles. While all of these fears are common and understandable, it is important to talk with the healthcare team, so that a plan can be built that addresses these fears and provides reassurance and answers to questions.