Beyond the Bleeds

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. “Transition is not just about moving from one doctor to another; it’s about learning to manage your own healthcare needs.” – Andrea Buxton Today on Beyond the Bleeds: Transitioning in healthcare involves shifting from pediatric to adult care and independently managing a bleeding disorder. Formal transition programs, like Minnesota Treatment Center’s transition day, are crucial in ensuring seamless care. The National Hemophilia Program Coordinating Center (NHPCC) aids treatment centers in developing consistent and supportive transition programs. Support from parents and caregivers is pivotal, gradually allowing young patients to take on more healthcare responsibilities. Quality Improvement (QI) projects include surveying parents to alleviate their anxieties about transitioning responsibilities to their children. Integrated primary care within hemophilia centers aims to streamline patient visits and minimize time off work or school. A comprehensive booklet and interactive materials help patients understand and manage their bleeding disorders effectively. Flexibility in the program accommodates patients’ varying developmental stages, ensuring a tailored approach to transitioning. Resources Mentioned: Hemophilia Outreach Center (HOC) National Hemophilia Program Coordinating Center (NHPCC) Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss out on the Hemophilia Outreach Center’s Winter Education Program on December 7th, 2024, at the Oneida Hotel in Green Bay! With inspiring presentations, fun activities for kids, and a special visit from Santa, it’s an event you won’t want to miss! Visit: https://www.hemophiliaoutreach.org/events to register today. The post Seamless Healthcare Transition for Bleeding Disorders with Andrea Buxton & Erica Brock appeared first on Hemophilia Outreach Center.

11/25/24 • 26:13

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 self-advocacy and community awareness, this episode sheds light on an often-overlooked aspect of women’s health. Andrea Buxton is a dedicated nurse practitioner at the Hemophilia Outreach Center in Green Bay. Her expertise in uncovering and managing bleeding disorders has been pivotal in diagnosing many individuals who, like Nora Schmitt, have struggled with undiagnosed symptoms for years. Andrea’s commitment to education and patient care is making a profound impact on community health. “Advocacy is crucial; don’t let dismissive attitudes from healthcare professionals prevent you from getting the care you need.” – Nora Schmitt Today on Beyond the Bleeds: Menorrhagia is described by the “7 to 1 rule”: periods lasting over seven days, changing protection every two hours, or passing clots the size of a quarter or larger. Heavy menstrual periods can lead to other health issues, like iron deficiency and anemia. Approximately one-third of young individuals with heavy menstrual cycles may have an underlying bleeding disorder. HOC’s menorrhagia clinic offers affordable testing options and engages actively with local gynecologists for better referrals. Delayed diagnosis is common, with the CDC noting an average 16-year gap between onset and diagnosis for von Willebrand disease. Initial testing includes basic coagulation labs, thyroid levels, blood count, and iron levels, with further specialized tests if necessary. Treatment options vary from hormone therapies, such as oral contraceptives and IUDs, to medications like Lysteda, with one-year supply plans and follow-ups. Resources like the Foundation for Women and Girls with Bleeding Disorders and the National Bleeding Disorders Foundation offer educational support and information on local clinics. Guest Contact Information: Andrea Buxton: Hemophilia Outreach Center (HOC) https://www.hocgb.org Resources Mentioned: Foundation for Women and Girls with Bleeding Disorders: https://www.fwgbd.orgNational Bleeding Disorders Foundation: https://www.hemophilia.orgCDC Treatment Centers Directory: https://www.cdc.gov/ncbddd/hemophilia/treatment.html Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss out on the Hemophilia Outreach Center’s Winter Education Program on December 7th, 2024, at the Oneida Hotel in Green Bay! With inspiring presentations, fun activities for kids, and a special visit from Santa, it’s an event you won’t want to miss! Visit: https://www.hemophiliaoutreach.org/events to register today. The post Beyond Heavy Periods: Exploring Menorrhagia and Bleeding Disorders with Andrea Buxton and Nora Schmitt appeared first on Hemophilia Outreach Center.

11/11/24 • 32:34

Today on Beyond the Bleeds, John and I welcome Peggy Meyer, 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 pioneering advancements like gene therapy. Peggy Meyer, R.N., is a trailblazer in hemophilia care. With an impressive career spanning multiple decades, Peggy co-founded the Hemophilia Outreach Center, transforming it from a small, volunteer-driven initiative into a comprehensive care facility. Peggy’s dedication has positively impacted countless lives, making her an enduring figure in the hemophilia community. "It's been a patient-driven clinic from the very beginning, and it still is." ~ Peggy Meyer Today on Beyond the Bleeds:·     Peggy and Audrey Noskowicz began training families in Green Bay to self-infuse IVs at home.·     Both nurses operated initially from Peggy's home, emphasizing their mission's informal yet dedicated nature.·     The first clinic space was a small corner in a St. Vincent lobby, which expanded as demand for their services grew.·     They partnered with local doctors and worked with the Great Lakes Hemophilia Foundation to build their operations.·     Peggy went without a salary for four months to ensure the clinic's financial stability.·     HOC's growth eventually led to its gaining a suite at Bellin Hospital, where it continued to expand its services.·     Gene therapy, which was envisioned decades ago, has become a reality at HOC, marking a significant milestone.·     Since its humble beginnings, HOC has grown into a comprehensive care center, offering outreach clinics and a wide range of services. Resources Mentioned: Great Lakes Hemophilia Foundation https://www.glhf.org Bellin Health: https://www.bellin.org Hemophilia Outreach Center: https://www.hocgb.org Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer  Don’t miss out on the Hemophilia Outreach Center’s Winter Education Program on December 7th, 2024, at the Oneida Hotel in Green Bay! With inspiring presentations, fun activities for kids, and a special visit from Santa, it’s an event you won’t want to miss! Visit:  https://www.hemophiliaoutreach.org/events  to register today.

10/28/24 • 19:57

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 hemophilia. Jamison Buxton became deeply involved in the hemophilia community after his son was diagnosed with hemophilia B in 2003. His commitment led him to join the board of directors in 2012, and by 2016, he assumed the CEO role. Under his leadership, the center has expanded significantly, serving an even larger patient population and providing crucial support and resources to those affected by bleeding disorders. "I wanted to ensure that patients and families had the same care and services that I was offered in raising my son." ~ Jamison Buxton Today on Beyond the Bleeds: ·     Early involvement with a hemophilia treatment center can provide essential information and support for navigating the challenges of a bleeding disorder.·     It is important for parents to document everything to explain their child's condition and any bruises or injuries that may appear.·     Opening a new clinic in Wausau provides patients with local access to care, reducing the need for long-distance travel.·     The expansion of the Green Bay clinic was driven by a need to accommodate a growing patient population.·     Strategic planning with the board of directors ensures that the center meets future demands and continues providing high-quality care.·     Experiencing the challenges of having a child with a bleeding disorder gives Jameson a personal perspective that influences how he leads the organization.·     Having a mix of employees with and without personal connections to bleeding disorders enriches the team and enhances patient care.·     Finding a hemophilia treatment center near you is crucial for accessing specialized care and support. Guest Contact Information: Jamison Buxton: https://hemophiliaoutreach.org/contact-us Resources Mentioned: Hemophilia Outreach Center: https://hemophiliaoutreach.org CDC Hemophilia Treatment Center Directory: https://www.cdc.gov/ncbddd/hemophilia/HTC.html  Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer  Don’t miss out on the Hemophilia Outreach Center’s Winter Education Program on December 7th, 2024, at the Oneida Hotel in Green Bay! With inspiring presentations, fun activities for kids, and a special visit from Santa, it’s an event you won’t want to miss! Visit:  https://www.hemophiliaoutreach.org/events  to register today.

10/28/24 • 13:23

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 insights on why nutrition is critical for those in the bleeding disorders community. From the significance of weight-based medication to practical tips on maintaining a nutritious diet on a budget, Jill provides a wealth of knowledge to improve overall health and wellness. Jill Larson is a seasoned nutrition expert passionate about science and teaching. With a background in biochemistry and a degree in nutrition sciences, Jill brings evidence-based practices to her role at the Hemophilia Outreach Center. Her work focuses on cardiovascular health, inflammation reduction, microbiome health, and practical strategies for eating well without breaking the bank. “Beans and lentils, it diversifies the proteins, provides some nutrients, including iron, that our patients would be interested in, and fiber, which many of us are just woefully low on.”  – Jill Larson Today on Beyond the Bleeds: Diversifying protein sources with beans and lentils is important for better nutrition and budgeting. Frozen vegetables can sometimes be healthier than fresh ones due to their peak ripeness preservation. Buying raw produce like potatoes in bulk instead of processed snacks is cost-effective. Nutritional practices can significantly reduce the risk of cardiovascular disease and other chronic illnesses. The role of meal planning in reducing food waste and improving dietary habits. Strategies for stretching your food budget include buying in bulk and freezing various foods. The benefits and safety tips of using nutritional supplements and herbal products. Insight into the appropriate use and selection of vitamins and dietary supplements, especially in the bleeding disorders community. Guest Contact Information: Jill Larson: http://hemophiliaoutreach.org/services/nutritionist Resources Mentioned: Environmental Working Group: https://www.ewg.org National Institutes of Health: https://www.nih.gov Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss out on the Hemophilia Outreach Center’s Winter Education Program on December 7th, 2024, at the Oneida Hotel in Green Bay! With inspiring presentations, fun activities for kids, and a special visit from Santa, it’s an event you won’t want to miss! Visit: https://www.hemophiliaoutreach.org/events to register today. The post Beans, Lentils, and Beyond: Essential Nutrition Insights for Hemophilia Patients appeared first on Hemophilia Outreach Center.

10/28/24 • 29:28

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. Alyssa Myrie is a devoted mother whose two sons, Elias and Eliot, attend Camp Klotty Pine. With years of experience managing her children’s bleeding disorders, Alyssa brings a rich perspective on the challenges and triumphs of parenting in such unique circumstances. Her insights are invaluable for other parents contemplating sending their children to bleeding disorder-specific camps. “Don’t let your fear hold your kids back fromexperiencing something amazing.” – Alyssa Myrie Today on Beyond the Bleeds: Camp Klotty Pine is an overnight camp for children with bleeding disorders. It offers both fun activities and medical education. The camp runs for a week and welcomes children from age seven to age 15. It offers the opportunity to become leaders in training. Elias and Eliot initially felt homesick but soon thrived by making friends who understood their unique challenges. The “big stick” ceremony rewards campers who infuse themselves, promoting independence in their medical care. Alyssa found the first year difficult as a parent but now sees the camp as a safe and enriching environment for her children. Activities like the ABCs (archery, fishing, sports) and the talent show were highlighted as significant and enjoyable parts of the camp. Both boys plan to return to camp and become leaders in training, inspired to help other kids in a similar situation. Alyssa advises other parents to ask questions and not let their fears prevent their children from gaining this valuable experience. Resources Mentioned: Camp Klotty Pine Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss out on the Hemophilia Outreach Center’s Winter Education Program on December 7th, 2024, at the Oneida Hotel in Green Bay! With inspiring presentations, fun activities for kids, and a special visit from Santa, it’s an event you won’t want to miss! Visit: https://www.hemophiliaoutreach.org/events to register today. The post Facing Fears and Finding Friendship at Camp Klotty Pine with Alyssa, Eliot, and Elias Myrie appeared first on Hemophilia Outreach Center.

10/28/24 • 26:26

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. Bonnie Des Jardins has been a registered dental hygienist for 32 years and practices at the Hemophilia Outreach Center in Green Bay. Educated at Northeast Wisconsin Technical College, Bonnie transitioned from private practice to working with the bleeding disorders community ten years ago. Her dedication to expanding her expertise has made her an invaluable asset to the center and her patients, promoting the importance of comprehensive dental care. “We have found correlations between oral inflammation and your heart health, oral inflammation and uncontrolled diabetes, and oral inflammation and low birth weight babies.” ~ Bonnie Des Jardins Today on Beyond the Bleeds: In dentistry, the portosystemic link is a significant connection between oral health and overall systemic health. Inflammation in the mouth can correlate with health issues such as heart disease, uncontrolled diabetes, and low birth weight in babies. Regular brushing and flossing are essential to managing the bacteria that cause oral inflammation. Stannous fluoride toothpaste offers multiple benefits, including cavity protection, bacterial reduction, and natural desensitization. Patients with bleeding disorders should always coordinate their dental care with their healthcare team to avoid procedure complications. Regular dental visits, including routine cleaning every six months, are crucial for managing dental decay and gum health. Sip all day, get decay: prolonged exposure to sugary or acidic drinks increases the risk of cavities. Resources like local colleges’ dental hygiene programs and community clinics are available for underinsured or uninsured patients needing dental care. Guest Contact Information: Bonnie Des Jardins Hemophilia Outreach Center Resources Mentioned: Northeast Wisconsin Technical College Dental Clinic Tri-County Dental in Outagamie, Winnebago, and Calumet counties. Bridge Community Clinic in Wausau Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss out on the Hemophilia Outreach Center’s Winter Education Program on December 7th, 2024, at the Oneida Hotel in Green Bay! With inspiring presentations, fun activities for kids, and a special visit from Santa, it’s an event you won’t want to miss! Visit: https://www.hemophiliaoutreach.org/events to register today. The post Dental Hygiene Challenges and Solutions for the Bleeding Disorders Community with Bonnie Des Jardins appeared first on Hemophilia Outreach Center.

10/28/24 • 27:38

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 managing hemophilia, von Willebrand disease, or any rare bleeding condition, this space is for you. We'll dive into personal stories, medical insights, and the latest in treatment advancements, fostering an environment where you feel heard and supported. Join us as we walk you through our mission to make life with bleeding disorders not just manageable, but powerful.  "Inspired Stories of resilience and hope can make a world of difference when living with a bleeding disorder." ~John Mazzariello “A community where you feel heard, understood, and empowered is a crucial part of managing bleeding disorders.” ~Heather Hansen  Today on Beyond the Bleeds: ·     Understanding that living with a bleeding disorder often means overcoming unique physical and emotional challenges.·     Connecting with others who share similar experiences can provide crucial support.·     Ongoing advancements in medical research are continually improving the quality of life for those with bleeding disorders.·     Access to updated treatment options and professional advice is key to effective management.·     Stories of resilience inspire hope and remind us that we can lead powerful lives.·     Managing a bleeding disorder involves navigating healthcare systems, which can be complex and daunting.·     Practical tips and resources can significantly aid in day-to-day management.·     Our primary goal is to cultivate a sense of community and empowerment for all listeners. About your hosts of Beyond the Bleeds: Heather HansenProgram/Communications CoordinatorHeather joined HOC as the Program/Communications Coordinator in July 2023. With a bachelor’s degree in social work from UW-Green Bay, she brings over 20 years of experience in social work, particularly in the HIV/AIDS community and foster care/adoption. Heather has extensive experience in program development and communications, including social media and newsletters.Heather lives near Lake Michigan with her children and two Boxer dogs, Gypsy and Boston. In her free time, Heather enjoys reading, traveling, and kayaking. As a cohost of "Beyond the Bleeds," she’s excited to bring new education and fun to the HOC community.John B. Mazzariello LPNResearch Coordinator A former International Certified Arborist, John moved to Wisconsin in 2005 from the Pacific Northwest and began his nursing career shortly thereafter. He has been a lab technician and Research Coordinator with The Hemophilia Outreach Center since 2016. Outside of the clinic, John plays guitar with several local music groups and hosts a YouTube channel focused on sports card and memorabilia collecting.  Resources Mentioned: Hemophilia Outreach: https://hemophiliaoutreach.org Stay tuned, subscribe, and join us as we explore the many facets of life with bleeding disorders, making sure that life beyond the bleeds is brighter and more empowered for all.

9/5/24 • 02:08