Podcast

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 living with a bleeding disorder—or caring for someone who does—feel more empowered and ready for emergencies, whether at home or traveling far from their usual care team.

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 advocacy shapes state and national policy, and share vital resources that empower our community to fight for their rights.

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 discuss the origins of BD SUMHAC, the deep connections between chronic conditions, mental health, and substance use, and the urgent advocacy work happening to dismantle discrimination and secure equal access to care for the bleeding disorders community.

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 knowledge about their health and family history.

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.

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 of support for patients and families navigating uncharted territory.

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 dedication and care during these tumultuous times.

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.

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...

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...

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...

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...

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 education in managing chronic conditions.

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...

Today on Beyond the Bleeds, Heather and John welcome Jill Larson, a nutritionist with the comprehensive care team at the Hemophilia Outreach Center in Green Bay. In this episode, Jill shares her invaluable...

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 Elliot share their heartwarming stories, from overcoming homesickness to forming lifelong friendships with others with similar bleeding disorders.

Today on Beyond the Bleeds, we welcomed Bonnie Des Jardins, a registered dental hygienist in Green Bay, Wisconsin. Bonnie shares her insights on the critical connection between oral and systemic health. She sheds light on the unique challenges and necessary precautions for dental care within the bleeding disorders community

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.

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.

Welcome to Beyond the Bleeds! In this very first episode, John and I are excited to introduce ourselves and lay the foundation for a community centered around life with bleeding disorders. Whether you're...