Diagnosis of any chronic illness like kidney disease can be a very turbulent time for any patient. The information and diagnosis may feel overwhelming and the patient might feel at a loss in connecting with his family, friends and even healthcare team. What is it like to live with a chronic kidney disease, how does it impact your relations and psychological and mental health? Let’s hear it firsthand from Ms. Ida Aspro, who was born with polycystic kidney disease and has experienced the many ups and downs that are part of this illness. Many of her family members also have the same kidney disease and her sister has had a liver and kidney transplant. She was a teenager when first diagnosed and when she grew up became a nurse.

As the disease progressed, she developed kidney failure, which required starting hemodialysis, initially in the hospital and then at home. In 2018, she was informed that an anonymous living donor was a match for her, and she received a kidney transplant that same year.One very important issue raised during this conversation was how personal relationships can be changed with the onset of any illness. While some patients may want to receive as much support as possible from family and friends, others might end up avoiding everyone.

Patients might not like to be the recipients of pity or appreciate themselves as being ill. Others may feel stigmatized by the new label of illness. Surprisingly, even when the disease runs in the family, it doesn’t mean that the members know how to react or what to do. There is a need for a support system whereby family members receive the resources to be able to deal with these issues. When a genetic illness is diagnosed among various family members, the patients and their families begin a lifelong search to find meaning for this occurrence. Sometimes they find solace with the reasoning that some old “karma” might have been a trigger. Perhaps a “curse” was placed on the family for some long-forgotten or imagined misdeed. We will hear about these details from Ms Aspro’s vivid and personal narrative.

Ida faced many challenges along her journey: She had an ageing mother with Alzheimer’s and a young son, whose health was also not optimal. Also, she delayed her kidney transplant for some time as she was unsure about what her life would be like with this new treatment. Some of the feelings that she or others may experience include:

Anxiety, despair

Distrust of clinicians

Somatic symptoms

Denial of reality

Panic attacks

Dissociation

Resilience

Listen to this podcast, a conversation during which Ida Aspro and I speak about her journey as a patient and family member. We would like to thank the Kidney Foundation of Canada for organizing this webinar.