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Unpacking the Gift of Life
By Valen KeeferHealth & Fitness
Unpacking the Gift of Life episodes
- Now What? Finding Your Path Through Kidney Care
"Now what?" It's the question Valen asked 25 years ago as an 18-year-old newly under the care of nephrologist Dr. Terry Watnick, and it's the same question she's answering in this episode for anyone facing a new kidney disease diagnosis today. Valen reunites with Dr. Watnick, a nephrologist and PKD researcher at the University of Maryland School of Medicine, to cover the fundamentals of kidney care for newly diagnosed patients, from building a healthcare team to understanding the different types of nephrology care available. Walk away knowing how to build a healthcare team you trust, how to know what type of care is right for you, and how to find your community along the way.
About Your Host
Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant,
www.valenkeefer.com
Additional Resources
- https://pkdcure.org/
- https://pkdcure.org/research/centers-of-excellence/
- https://www.medschool.umaryland.edu/profiles/watnick-terry/
45 min - 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, what they look like in practice, and how advocacy groups are helping to translate them into plain language so patients can be empowered with knowledge.
Tune in to learn more about the guidelines shaping clinical care and what they mean day-to-day for patients and caregivers.
About Your Host
Valen Keefer – Patient Advocacy Leader & Strategic Healthcare Consultant, www.valenkeefer.com
Additional Resources
- American Kidney Fund
- AKF - Unknown Causes of Kidney Disease Project
- KDIGO
- The IgA Nephropathy Foundation
- Alport Syndrome Foundation
37 min - 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, awareness, and self-expression.
About Your Host:
Valen Keefer – Patient Advocacy Leader & Strategic Healthcare Consultant, www.valenkeefer.com
Additional Resources
- The Kidney Foundation of Canada
- American Society of Transplantation
- Living Donor Circle of Excellence
44 min - 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.valenkeefer.com
Additional Resources
Dr. Pranav Garimella - Pranav Garimella, MBBS, MPH, FASN - Nephrology (Kidney) | UC San Diego Health
Dr. Jill Green - Jill A. Green
PKD Centers of Excellence - Centers of Excellence - Polycystic kidney disease | PKD treatment research | PKD Foundation
UC San Diego PKD Center of Excellence - Polycystic Kidney Disease Care | UC San Diego Health
American Kidney Fund - Join us in fighting kidney disease on all fronts | American Kidney Fund
Rare Kidney Disease Action Network
https://www.kidneyfund.org/rare-kidney-disease-action-network
Unknown Causes of CKD Program
https://www.kidneyfund.org/professionals-and-research/unknown-causes-kidney-disease-project
47 min - 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, www.valenkeefer.com
Additional Resources
- CaRe network for patients and clinicians to locate investigators participating in clinical trials – Cardio Renal Institute, https://cardiorenalinstitute.com/
- Clinical Trials from Around the World, https://clinicaltrials.gov
- IgA Nephropathy Foundation, https://igan.org/
43 min - 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.valenkeefer.com
Additional Resources
- Transplants.org, a nonprofit for transplant patients from first consideration to lifelong health, www.transplants.org
- Valeos, a nonprofit data initiative improving outcomes and access for transplant patients through data collaboration – www.valeos.org
- Tristan Mace’s Wall Street Journal Article – www.wsj.com/health/healthcare/he-got-a-new-heart-now-this-34-year-old-is-fighting-to-fix-the-transplant-system-394a8f78?
- Tristan Mace – tristanmace.com
- Summit Nephrology, Dr. Adarsh Bhat - www.summitnephrology.com/doctors/adarsh-bhat/
37 min - 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.valenkeefer.com
Additional Resources
- Transplants.org, a nonprofit for transplant patients from first consideration to lifelong health, www.transplants.org
- Valeos, a nonprofit data initiative improving outcomes and access for transplant patients through data collaboration – www.valeos.org
- Tristan Mace’s Wall Street Journal Article – www.wsj.com/health/healthcare/he-got-a-new-heart-now-this-34-year-old-is-fighting-to-fix-the-transplant-system-394a8f78?
- Tristan Mace – tristanmace.com
- Summit Nephrology, Dr. Adarsh Bhat - www.summitnephrology.com/doctors/adarsh-bhat/
43 min - 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, Health Educator, & Strategic Consultant, www.valenkeefer.com
Additional Resources
- ARPKD Facebook Support Group, https://m.facebook.com/groups/ARPKD/?ref=share&mibextid=wwXIfr
- Harmony for Hope, https://harmony4hope.org/
- “Self Care While Being a Caregiver” – featuring Noah Keefer on Otsuka’s Patient Education Network, https://www.otsukapatiented.com/kidney-disease/community-stories/self-care-while-being-caregiver
- “The Crucial Care Partner” – Episode 5 of Letters of Hope, a docuseries on the trials and triumphs of transplantation, https://valenkeefer.com/letters-of-hope-docuseries
- “Understanding ARPKD” – PKD Foundation, https://pkdcure.org/about-the-disease/arpkd/
- “Welcome to Holland” – Emily Perl Kingsley, https://www.emilyperlkingsley.com/welcome-to-holland
30 min - 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, Health Educator, & Strategic Consultant, www.valenkeefer.com
Additional Resources
- ARPKD Facebook Support Group, https://m.facebook.com/groups/ARPKD/?ref=share&mibextid=wwXIfr
- Harmony for Hope, https://harmony4hope.org/
- “Self Care While Being a Caregiver” – featuring Noah Keefer on Otsuka’s Patient Education Network, https://www.otsukapatiented.com/kidney-disease/community-stories/self-care-while-being-caregiver
- “The Crucial Care Partner” – Episode 5 of Letters of Hope, a docuseries on the trials and triumphs of transplantation, https://valenkeefer.com/letters-of-hope-docuseries
- “Understanding ARPKD” – PKD Foundation, https://pkdcure.org/about-the-disease/arpkd/
- “Welcome to Holland” – Emily Perl Kingsley, https://www.emilyperlkingsley.com/welcome-to-holland
40 min - 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
- Swapna Kakani (@swapnaspeaks), https://www.instagram.com/swapnaspeaks
- The Gutsy Perspective – Short Bowel Syndrome Quality of Life Research, https://www.thegutsyperspective.org/
- Alabama Rare – Alabama rare disease policy advocacy network, www.alabamarare.org
- State Zebra Network – rare disease state policy advocacy network, www.zebranetwork.org
- Intestinal Rehab & Transplant Unwrapped – organization for supporting patients with intestinal failure, rehabilitation, and transplantation, www.transplantunwrapped.org
35 min
About Unpacking the Gift of Life
From the publisher's feed
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.