Beyond the Bleeds
Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories, and practical advice for managing these conditions. Whether you're living with a bleeding disorder or supporting someone who is, this podcast offers support, education, and a sense of community. Join us as we explore the challenges, triumphs, and innovations in care. For more resources, visit hemophiliaoutreach.org.
Episodes
Today on Beyond the Bleeds, we’re joined by Dr. Bridget Freeman to explore the importance of sleep health—why it’s foundational to our overall well-being, how our sleep patterns evolve throughout a lifetime, and what we can do to optimize sleep for physical, mental, and emotional health. From the science of circadian rhythms to practical fixes for common sleep problems, we break down actionable steps for creating a better night’s r...
Today on Beyond the Bleeds, I’m joined by Chris Bivins, Child Life Specialist, to talk about the essential role Child Life professionals play in pediatric healthcare settings. We explore how Child Life Specialists help children and families navigate the challenges of illness, injury, and hospitalizations—ensuring that kids develop emotionally and socially, even amid medical treatments. We also discuss the powerful tools they utiliz...
Today on Beyond the Bleeds, we sat down with Andrea Buxton, a nurse practitioner, and Renata Seiler, nurse coordinator, to discuss what happens when patients with bleeding disorders visit the emergency room. Together, we unpacked the unique challenges these patients face, the critical importance of preparedness and advocacy, and the decisive role of coordinated care. This conversation is packed with insights that can help anyone li...
Today on Beyond the Bleeds, we sit down with Kate Bazinsky and Joe Hoelscher for part two of ‘BD SUMHAC Advocating for Fair Mental Health and Substance Use Treatment Part II’ and dive deep into the complexities of advocating for fair mental health and substance use treatment for people with bleeding disorders. Together, we break down the obstacles families face in accessing equitable inpatient or residential care, explore how advo...
Today on Beyond the Bleeds, we’re joined by Kate Bazinsky, chair of the Bleeding Disorder, Substance Use and Mental Health Access Coalition (BD SUMHAC), and Joe Hoelscher, a behavioral health specialist at the Hemophilia Outreach Center in Green Bay. Together, we shine a light on the painful and often unseen barriers faced by people with bleeding disorders when they seek inpatient mental health and substance use treatment. We discu...
Today on Beyond the Bleeds, John and Heather welcome Sumedha Ghate, a genetic counselor at HOC in Green Bay, Wisconsin. Sumedha delves into the intricate world of genetic counseling, discussing the nuances of determining hereditary patterns in hemophilia and other bleeding disorders. The conversation helps demystify genetic testing and its role in diagnosing and managing bleeding disorders, aiming to empower individuals with knowl...
Today on Beyond the Bleeds, Heather and John welcome Karin Koppen and Kailee Frederick from the Great Lakes Hemophilia Foundation to discuss their incredible work and programs serving the bleeding disorders community. Karin and Kailee share insights into the distinctive roles of local chapters in providing education, support, and advocacy while working closely with hemophilia treatment centers to ensure comprehensive patient care.
...Today, on Beyond the Bleeds, we share the experiences of Erin Wegner, a mother who navigates life with two sons diagnosed with hemophilia. Alongside Angie Farrar, lead nurse coordinator at the Wausau Hemophilia Outreach Center, Erin discusses the challenges and learning curves of her unexpected journey into the world of bleeding disorders, emphasizing the importance of specialized care and community support.
Erin Wegner is a mot...
Today on Beyond the Bleeds is part 2 of our “Reflections on Hemophilia’s Bad Blood Era” with Peggy Maier and Audrey Nuskiewicz, foundational Hemophilia Outreach Center (HOC) nurses. We delve into the challenges faced by the hemophilia community during this period, the impact of HIV/AIDS, and the resilience and hope that emerged in the face of adversity. Peggy and Audrey share their experiences as caregivers, advocates, and pillars ...
Today on Beyond the Bleeds, we’re thrilled to have Peggy Maier and Audrey Nuskiewicz sharing their poignant memories and impactful experiences during the Bad Blood Era. This challenging period in the bleeding disorders community saw contaminated blood products spread diseases like HIV and Hepatitis C. Peggy and Audrey delved deeply into their firsthand experiences as nurses, supporting their patients and community with unwavering d...
Welcome to Beyond the Bleeds. Today, we sit down with Angie Farrar, lead nurse coordinator at the Hemophilia Outreach Center’s Wausau location, to discuss the center’s vital role in improving bleeding disorder care in central Wisconsin. We delve into the challenges patients face in rural areas and the significant strides made in education and outreach to better serve individuals with bleeding disorders.
Angie Farrar brings over ...
On Beyond the Bleeds, John and Heather take a different approach today by becoming both the host and the guest, diving deep into life transitions in healthcare. Previously, they’ve discussed the Hemophilia Outreach Center’s support systems, but today, they broaden the scope to explore how transitions affect all aspects of life. These multifaceted and universal transitions are covered from childhood to adulthood, navigating work env...
Today on Beyond the Bleeds, we welcome Rochelle Ginter, RN, at the Hemophilia Outreach Center in Green Bay, Wisconsin, and David Novak, who shares his experience receiving gene therapy for hemophilia A. We delve into the mechanics of hemophilia A, the latest advancements in gene therapy, and David’s journey in transforming his treatment approach. The conversation highlights expectations, impacts, and the broader implications of gen...
Today on Beyond the Bleeds, John and Heather sit down with Kelli Birk and Crosby Willett, alongside Tricia Delaney, a nurse at the Hemophilia Outreach Center in Green Bay, Wisconsin, to discuss the importance of school in services for children with bleeding disorders. The conversation covers what these in-services entail, how they benefit both students and school staff, and personal experiences from Kelly and Crosby on navigating t...
Today on Beyond the Bleeds, we welcome Dr. Bridget Freeman to discuss the essential elements of comprehensive health outcomes. We dive into the multifaceted approaches required to ensure long-lasting health improvements, encompassing agriculture, child education, social determinants, and more. Our conversation touched on the profound implications of Adverse Childhood Experiences (ACEs) and the increasing role of health literacy in ...
Today on Beyond the Bleeds, John and Heather welcome Andrea Buxton and Erica Brock to explore the critical process of transitioning healthcare for patients with bleeding disorders. Our conversation dives into the stages of transition from pediatric to adult care, community support, and the programs available to ease this process. The discussion emphasizes the challenges patients and their caregivers face and the importance of educa...
Today on Beyond the Bleeds, we sit down with Andrea Buxton, a nurse practitioner at the Hemophilia Outreach Center (HOC), and Nora Schmitt, a community member and patient advocate. We discuss the launch of HOC’s new menorrhagia clinic in Green Bay, Wisconsin, diving into the complexities of diagnosing and treating excessively heavy menstrual periods. From understanding the “7 to 1 rule” of menorrhagia to the significant role of sel...
Today on Beyond the Bleeds, John and Heather welcome Jamison Buxton, CEO of the Hemophilia Outreach Center in Green Bay, Wisconsin, to discuss his journey from a parent of a child with hemophilia to leading an organization dedicated to supporting those with bleeding disorders. Jamison shares his personal experiences, the center's growth, and the importance of community and comprehensive care for individuals and families managing he...
Today on Beyond the Bleeds, we welcome the Myrie family—Alyssa, Elias, and Eliot—to discuss their experiences at Camp Klotty Pine. Set in Wisconsin, this unique summer camp caters to children with bleeding disorders. It offers them a safe space to enjoy traditional camp activities like swimming, archery, and fishing while providing essential education on managing their conditions. Alyssa, Elias, and Eliot share their heartwarming s...
Today on Beyond the Bleeds, John and I welcome Peggy Maier, an extraordinary nurse and co-founder of the Hemophilia Outreach Center (HOC) in Green Bay, Wisconsin. We delve into Peggy’s inspirational journey, the founding of HOC, and her undying commitment to helping those with bleeding disorders. Peggy shares incredible anecdotes from her decades-long career and discusses the evolution of hemophilia care, from grassroots efforts to...
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