Working with your clinician to make shared decisions for your care

Shared decision making can play a vital role in the treatment of kidney disease. When physicians involve patients in their care, they may be able to help slow progression and improve outcomes. In this episode, we discussed how patients and their physicians can achieve this and hear stories from patients who have been there.

 

In this episode, we spoke with:

 

Ansara Piebenga, parent of a child with kidney disease

Ansara Piebenga is the mother of two daughters. Her younger daughter was diagnosed at four months of age with a rare, genetic disease called primary hyperoxaluria. She received a year of daily (seven days a week!) hemodialysis and nightly peritoneal dialysis while being fed only through a gastric-tube.  Once she grew large enough (10 kilograms) she received a combined kidney and liver transplant at Stanford’s Lucile Packard Children’s Hospital at only 16 months of age.  Ansara's younger daughter is now a teenager who enjoys driving, playing lacrosse, and petting her three dogs.  Her daughter will celebrate 15 years with her transplanted organs this June and their entire family will thank her donor's family once again for their selfless and generous gift.  Ansara has mentored other families facing chronic kidney disease since 2007. She volunteers for Children's Mercy Hospital in Kansas City, the Medical University of South Carolina, the Improving Renal Outcomes Collaborative, Transplant Families, the National Kidney Foundation, the American Society of Pediatric Nephrology, and the American Academy of Pediatrics. 

 

Dr. Susan P. Wong, nephrologist

Susan Wong is an Assistant Professor at the University of Washington and a nephrologist and bioethics consultant at the Seattle VA. She leads a research program on treatment practices for advanced kidney disease with a focus on dialysis practices, conservative management without dialysis, and end-of-life and kidney palliative care. When she's not working, she enjoys spending her time gardening and with her 3 beautiful children.

 

Dr. Taylor House, nephrology fellow

Dr. Taylor House is a senior pediatric nephrology fellow at the University of Washington and Seattle Children’s Hospital, and she will be joining the faculty at the University of Wisconsin at Madison in the fall. She performs research focused on supporting the flourishing of children with kidney disease and their families through the integration of palliative care into routine nephrology care. She has a specific interest in improving communication between patients, caregivers, and clinicians surrounding kidney disease decision-making.

 

Elizabeth Fortune, kidney patient

Elizabeth Fortune was diagnosed with cancer in 2011. Two significant developments came from her fight with cancer. First, she and her husband started their own non-profit to support fellow cancer survivors and their caregiver. Second, she was left with End-Stage Renal Disease as a result of chemotherapy. She has been on dialysis since her diagnosis in April 2014.  She is a member of NKF's Kidney Advocacy Committee. She also enjoys knitting, reading, writing about her experience with cancer and kidney failure, and traveling with her husband. They also have the greatest cat, Mr. Meowington.