Welcome! In these videos and articles, meet a group of individuals who either live with polycystic kidney disease or care for someone who does. They share personal stories and insights from their journeys following a PKD diagnosis.
Guilt During the PKD Journey
Valen and her family describe the guilt they felt while traversing Valen's lifelong PKD journey.
Becoming the Inspiration I Needed
Valen shares her experiences growing up with PKD and wishing she had examples of thriving adult PKD patients she could look up to. As an adult, she has made it her mission to create a kidney community where people can share their journeys.
CKD: Emotional Roller Coaster
CKD can strongly affect one’s mental health. Steve chronicles his emotional highs and lows as he navigated his disease.
Finding a Positive Outlook
Valen shares how she lives every day with gratitude, which helps her maintain a positive outlook in life even in her darkest days.
Self Care While Being a Caregiver
Noah talks about the importance of self-care while taking care of a sick loved one.
Taking Control of My Journey: Self-Advocacy
As a patient on a lifelong PKD journey, Valen learned along the way the importance of advocating for herself.
PKD Manifests in Different Ways
Valen and her family explain how PKD has manifested differently in Pam’s family members over 5 generations.
Dialysis to Transplant
Steve recalls the time he spent receiving dialysis while waiting to be placed on the transplant list and how his wife found a way to donate a life-saving kidney.
Deciding to Become A Living Donor
When Heather found out about Steve’s CKD early on in their relationship, she decided that she would do everything she could to help him on his CKD journey. 6 years later, Heather donated a kidney to save Steve’s life.
Hidden Disease Progression
Steve was weeks away from achieving his dream of playing college basketball. A simple blood pressure test changed his plans and started him on his CKD journey.