Our experiences shape more than our health. They shape our relationships, our identity, and the way we move through the world. In Season 3, Unpacking the Gift of Life explores the intersection of health, humanity, and connection—with hope, honesty, and hard-won insight to navigate care, find purpose, and live well alongside chronic illness.
Hosted by patient advocacy leader and two-time transplant recipient Valen Keefer, every episode is a reminder that none of us are navigating it alone. Through real stories from patients, transplant survivors, healthcare providers, researchers, and advocates, we share heartfelt conversations about building resilience, finding connection, and discovering the perspectives that make life so beautiful.
Don't You Know, KDIGO?: Clinical Guidelines and Why They Matter
In recent years, new KDIGO guidelines for both IgA nephropathy (IgAN) and PKD have been released – but what does this mean for patients and their loved ones? In this episode, Valen talks with Mike Spigler, Chief Program Officer and Vice President of Strategic Partnerships, Research and Education at the American Kidney Fund, about the KDIGO (Kidney Disease: Improving Global Outcomes) guidelines that shape care for kidney disease around the world. They discuss where these guidelines come from, ...
4 Sept 2026
Walking a Different Path: John Fluevog’s Story of Creativity, Transplant, and Purpose
Behind John Fluevog's decades of iconic shoe design is a personal story of kidney disease, transplant, and gratitude. Valen talks with John about his creative journey, his diagnosis of polycystic kidney disease, and the transplant that changed his outlook and inspired him to create shoes carrying a message of love and generosity. Through it all, he continues to "walk in the creative," offering advice along the way to others hoping to do the same. Discover how art can be a vehicle for advocacy...
9 Dec 2025
Hope on the Horizon: How Every Voice Shapes Research Innovation
The future of rare kidney disease treatment is full of hope and innovation. Valen chats with Dr. Jill Green and Dr. Pranav Garimella about groundbreaking research and why the patient voice matters when working with advocacy groups and industry to shape future treatments. Leave feeling inspired and informed about the innovations driving change in rare kidney disease care. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefe...
30 Oct 2025
On the Cutting Edge: Engaging in Rare Disease Research
Patients are key to advancing rare disease treatment. IgA nephropathy (IgAN) patient Russ Roberts and his nephrologist Dr. Arnold Silva discuss the role of clinical trials in rare kidney disease research and how patients and providers can work together to shape the future of treatment. Get practical advice on how to get involved in clinical research and make a difference. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, ww...
16 Oct 2025
Patient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 2)
Strong relationships with your healthcare team are essential for managing complex care. Valen and her nephrologist, Dr. Adarsh Bhat, explore how patients and providers can collaborate, while transplant recipient Tristan Mace shares tips on managing a complex care team. Discover valuable tips on building effective, supportive relationships with your healthcare providers. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valen...
16 Oct 2025
Patient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 1)
Strong relationships with your healthcare team are essential for managing complex care. Valen and her nephrologist, Dr. Adarsh Bhat, explore how patients and providers can collaborate, while transplant recipient Tristan Mace shares tips on managing a complex care team. Discover valuable tips on building effective, supportive relationships with your healthcare providers. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www....
2 Oct 2025
Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 1)
Caregiving is a shared journey. Valen is joined by mother-daughter duo Linda and Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) patient Claire Bevec, along with Valen’s husband Noah, to talk about the evolving dynamics of caregiving. Hear advice and strategies for navigating the caregiving journey and transition from pediatric to adult care with compassion and resilience. About Your Host Valen Keefer – Patient Advocacy Leader, Heal...
2 Oct 2025
Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 2)
Caregiving is a shared journey. Valen is joined by mother-daughter duo Linda and Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) patient Claire Bevec, along with Valen’s husband Noah, to talk about the evolving dynamics of caregiving. Hear advice and strategies for navigating the caregiving journey and transition from pediatric to adult care with compassion and resilience. About Your Host Valen Keefer – Patient Advocacy Leader, Heal...
18 Sept 2025
Action in Advocacy: The Patient’s Guide to Finding Your Voice
Advocacy starts with finding your voice. Valen and chronic rare disease patient advocate Swapna Kakani discuss how they discovered their purpose in patient advocacy and offer practical tips for anyone wanting to make a difference. Learn how to use your voice to drive change and support the rare disease community. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources S...
4 Sept 2025
Let’s Walk Together: Our Journeys with Rare Kidney Disease
Living with rare disease is a journey of challenges and triumphs. Valen and IgA nephropathy (IgAN) patient advocate Malkia White share their personal stories, exploring what makes the rare disease experience unique and the strength that comes from shared experiences. Tune in to hear about the power of connection in the rare disease community. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources #ThatG...
4 Sept 2024
Ask Us Anything
In the final episode of Season 1 of Unpacking the Gift of Life, Valen and Cristen invite you into an open conversation where no question is off-limits. In this “Ask Us Anything” special, they tackle topics that resonate deeply within the transplant community: coping with post-transplant depression, navigating the nuances of family and friend support, managing sun exposure, staying vigilant against COVID, and safeguarding your kidneys when surrounded by children. As they reflect on the season'...
19 Aug 2024
Advocating for Ourselves in Social and Healthcare Relationships
Communication and speaking up for ourselves is so important, yet can feel exhausting. Valen, Cristen, and their friend, Noelia, dig deep into three aspects of communication as it relates to patient advocacy. First, experiences of advocating for ourselves in our social relationships with partners, loved ones, friends, and the community at large. Second, the meaning, purpose, and value of a trusting relationship with our healthcare teams. And third, they share conversations about internal dialo...
9 Jul 2024
Three Unique Perspectives on Having Children: Pre- and Post-Transplant
Valen, Cristen, and their friend, Elizabeth, share their individual paths of whether to have children, what led to their choices, and how ADPKD and transplant shaped their decision-making. They acknowledge the emotions surrounding their difficult decisions, share personal stories on how they navigated and embraced having or not having a child, and how they moved forward in a positive way. Listen in to be inspired and empowered by their vulnerability and determination.
Learn more about your hosts:
Valen Keefer, Patient Advocate, Consultant, Educator, Motivational Speaker: www.valenkeefer.com (http://www.valenkeefer.com)
Cristen Wathen, Licensed Counselor and Associate Professor at Palo Alto University: https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc (https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc)
Additional resources:
PKD Australia Pregnancy & Childbearing Question Prompt List: https://drive.google.com/file/d/1Fu8lHf93b7IxbUF6_JPzLcKxU3oGEbvS/view?usp=sharing (https://drive.google.com/file/d/1Fu8lHf93b7IxbUF6_JPzLcKxU3oGEbvS/view?usp=sharing)
Transplant Pregnancy Registry: https://www.transplantpregnancyregistry.org/ (https://www.transplantpregnancyregistry.org/)
Pregnancy after deceased donor vs living donor kidney transplant: associated obstetric and graft outcomes: https://www.ajog.org/article/S0002-9378(23)00543-4/pdf (https://www.ajog.org/article/S0002-9378(23)00543-4/pdf)
Pregnancy, Motherhood & Organ Transplant: https://www.facebook.com/groups/41330239911 (https://www.facebook.com/groups/41330239911)
3 Jun 2024
Living Well Alongside Chronic Illness
We never forget the day we receive a life-altering diagnosis. Valen and Cristen share their pivotal moments of being diagnosed with polycystic kidney disease (PKD). With Valen being diagnosed as a child, they discuss the lessons learned from living with ADPKD from youth to adulthood. Through the challenges surrounding a lifelong health journey, they discovered a wellspring of resilience, strength, and above all, hope. Listen in to hear how they learned to live well alongside PKD and be inspired on how you can too.
Learn more about your hosts:
Valen Keefer, Patient Advocate, Consultant, Educator, Motivational Speaker: www.valenkeefer.com (http://www.valenkeefer.com)
Cristen Wathen, Licensed Counselor and Associate Professor at Palo Alto University: https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc (https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc)
Additional resources:
Valen’s blogs: Written Articles | Valen Keefer (https://valenkeefer.com/written-articles)
Gary Ware book: Playful Rebellion (https://www.breakthroughplay.com/playful-rebellion/)
PKD Foundation Center of Excellence: ADPKD Care | PKD Foundation (pkdcure.org) (https://pkdcure.org/carecenters/)
Spontaneous Muscle Release Technique (SMRT) back therapy: Full Circle School of Massage Therapy - Basic Massage Program and NCBTMB-Approved Continuing Education for Massage Therapists & Bodyworkers (efullcircle.com) (https://efullcircle.com/)
American Counseling Association: Coping with the stress and uncertainty of chronic health conditions (https://www.counseling.org/publications/counseling-today-magazine/article-archive/article/legacy/coping-with-the-stress-and-uncertainty-of-chronic-health-conditions)
6 May 2024
The Importance of Being Proactive with Our Emotional Wellbeing
Valen and Cristen delve into the profound world of emotions surrounding chronic illness. They discuss mental health stigma, the lack of support and resources, and why being proactive with our mental health is so important. You’ll learn insights into how to become an advocate for your emotional wellbeing and strategies for accessing and working with mental health professionals.
Hosted by:
Valen Keefer - Patient Advocate, Consultant, Educator, Motivational Speaker
Cristen Wathen - Licensed Counselor and Associate Professor at Palo Alto University
www.valenkeefer.com
(http://www.valenkeefer.com)www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc (http://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc)
Additional resources:
About Kate Bowler: www.katebowler.com/about/ (https://katebowler.com/about/)
American Counseling Association’s “What is Counseling?” : www.counseling.org/mental-health-counseling/what-is-counseling (https://www.counseling.org/mental-health-counseling/what-is-counseling)
Psychology Today: www.psychologytoday.com/us (https://www.psychologytoday.com/us)
PKD Foundation’s Resources: www.connect.pkdcure.org/ (https://connect.pkdcure.org/)
PKD Foundation’s Peer Mentor Program: www.connect.pkdcure.org/p2p-mentoring/ (https://connect.pkdcure.org/p2p-mentoring/)
This podcast is sponsored by Otsuka Pharmaceutical Development & Commercialization, Inc., and is not intended to provide medical advice.
1 Apr 2024
Meet Your Hosts and Learn the Meaning Behind Unpacking the Gift of Life
Hosts Valen and Cristen share how their unique yet parallel experiences of living with polycystic kidney disease (PKD) led to their serendipitous friendship and passion for patient advocacy. This episode introduces the two women and how they inspired the power of hope in each other before meeting. Valen and Cristen also explore how their PKD and transplant journeys motivate them to provide an honest perspective of the physical and emotional complexities of living with chronic illness.
By offering the support and resources they wish they had, Valen and Cristen aspire to connect with others who are not alone in their health journey – and whose experiences resonate with their own. Told through a conversation between friends, Valen and Cristen navigate the real stories, thoughts, and feelings that come with unpacking the extraordinary gift of life.
Hosted by:
Valen Keefer – Patient Advocate, Consultant, Educator, Motivational Speaker
Cristen Wathen – Licensed Counselor and Associate Professor at Palo Alto University
www.valenkeefer.com (http://www.valenkeefer.com)
https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc (https://www.paloaltou.edu/faculty/cristen-wathen-phd-lcpc-ncc )
This podcast is sponsored by Otsuka Pharmaceutical Development & Commercialization, Inc., and is not intended to provide medical advice.
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