PH Insights

Guests: Jaeger Spratt, advocacy and treatment access program manager; Amy Burant, pulmonary arterial hypertension patient of 12 years; and Colleen Connor, PH patient of 18 years. This episode of PH Insights is the second in a two-part series about the Supplemental Oxygen Access Reform Act, created in collaboration with the American Thoracic Society’s Breathe Easy podcast. Visit “How the SOAR Act Can Keep Patients' Oxygen Flowing” to listen to part one.   Guest host Jaeger Spratt highlights the voices of long-time PH patient advocates Amy Burant and Colleen Connor, who share their experiences with oxygen access and how those challenges have shaped their PH journeys. They also discuss their advocacy work and call on all members of lung disease communities, especially health care professionals, to advocate for the SOAR Act and help lung disease patients breathe easier.   To learn more about our advocacy efforts, visit PHA’s Advocacy Action Center and make your voice heard by using PHA’s SOAR Act advocacy message template to tell your legislators to pass the SOAR Act. If you have any questions about advocacy and the SOAR Act, please contact Advocacy@PHAssociation.org

Guests: Elise Whalen, DNP, MSN, APRN, FNP-C, CPN, nurse practitioner at Texas Children’s Hospital, assistant professor at Baylor College of Medicine and PHA PACE committee member; Jess MacLean, MSN, FNP-BC, Children's Hospital Colorado, Heart Institute - Pulmonary Hypertension   Emergencies don’t wait. For people living with pulmonary hypertension, preparedness isn’t just peace of mind — it is essential. In this episode, Elise Whalen and Jess MacLean share practical tips and information to help plan ahead for natural disasters, power outages and other medical emergencies.   To prepare for any emergency, visit PHA’s Emergency Situations page for additional resources.

Guests: Abby Sickles, program manager, Patient & Caregiver Programs and Marcie McGregor, PH patient and PHA Support Group Leader In this episode of PH Insights, guest host Abby Sickles welcomes Marcie McGregor to discuss her experience as a PHA support volunteer. Marcy shares her personal journey with pulmonary hypertension, the impact of peer support and the importance of community in navigating a chronic illness. They dive into the benefits of support groups, from easing isolation to boosting mental health and explore why no one should face PH alone.   To find a support program that works for you, visit https://phassociation.org/support/   

Guest: Oksana A Shlobin, MD, medical director and pulmonary hypertension program director of education and outreach, Advanced Lung Disease and Transplant Program, Inova Fairfax Hospital   On this episode, PH expert Oksana Shlobin provides a detailed overview of sarcoidosis-related PH. She reviews common signs and symptoms, outlines treatment options and shares insight into the complexities of diagnosing and managing SAPH. Shlobin also emphasizes the importance of effective communication between patients and their health care teams.   Learn more about sarcoidosis-related PH by downloading the brochure, PH and Sarcoidosis.

Guests: Navneet Singh, MD, ScM, MBA Assistant Professor of Medicine Associate Fellowship Program Director for Research Division of Pulmonary, Critical Care & Sleep Medicine The Warren Alpert Medical School, Brown University   Christopher Mullin, MD, MHS Assistant Professor of Medicine, Clinician Educator Director of the CTEPH Program; Associate Director of the Rhode Island Hospital Pulmonary Hypertension Center  The Warren Alpert Medical School, Brown University     On this episode of PH Insights, guest hosts and pulmonary hypertension experts Navneet Singh and Christopher Mullen talk about the risk factors for developing blood clots, along with current approaches to diagnosis and treatment. They explore pulmonary embolisms and chronic thromboembolic pulmonary hypertension, including the emotional impact these conditions have on patients. Singh and Mullin also cover treatment options, standard discharge practices and the importance of building a multidisciplinary care team.   To learn more, download the free brochure PH & CTEPH. Visit Financial Assistance for information about co-pay assistance.  

Guest: Naomi Habib, MD, co-director Pulmonary Hypertension Program at Arizona Pulmonary Specialists   On this episode, Naomi Habib, co-director of the Arizona Pulmonary Specialists PH Center of Excellence and recent PH Community Workshop-Phoenix co-chair, shares key takeaways from her experience and explains why these workshops benefit both patients and health care providers. The Pulmonary Hypertension Association’s PH Community Workshops are free one-day educational events designed to support patients, caregivers and families affected by pulmonary hypertension. These workshops provide a space for connection and support within the PH community while offering interactive sessions, expert-led discussions and networking opportunities for all attendees.  To learn more and find an upcoming event near you, visit PH Community Workshop.

Guest: Colleen Connor, PHA Board of Trustees, PH patient and advocate   The Pulmonary Hypertension Association accredited care center network was established over a decade ago to raise the quality of pulmonary hypertension care and expand patient access to specialized care and resources. In this episode, Colleen Connor shares the importance of PHA-accredited care centers, their approach to building your PH care team and its impact on her journey. She also highlights the benefits of the team-based approach used and how families can locate a center in their area. If you would like more information on the PHA-accredited care center program or find a center in your area, please visit https://phassociation.org/phcarecenters/

Guest: Mrinalini Krishnan, MD, FACC, regional director of pulmonary hypertension, MedStar Heart and Vascular Institute   In this episode of PH Insights, Mrinalini Krishnan discusses pulmonary hypertension due to left heart disease, the most common cause of PH.  Approximately 60% of people with LHD develop PH. Krishnan highlights the risk factors and signs and symptoms of PH-LHD that you should monitor over time. She also provides an overview of available treatment options. Download the Pulmonary Hypertension and Left Heart Disease brochure for more information.

Guest: Akshay Muralidhar, MD, co-director Pulmonary Hypertension Program at Arizona Pulmonary Specialists In this episode, Akshay Muralidhar provides an overview of pulmonary arterial hypertension and how a PAH diagnosis may affect a person’s daily activities and quality of life. He also shares the benefits of exercise and how a safe regimen can improve cardiovascular health and lead to reduced symptoms. Muralidhar provides a summary of the types of exercises suitable for PAH and tips for setting achievable goals.   For information on finding an exercise plan that works for you, visit Living with PH. Please consult your physician before making any changes to your exercise routine. to ensure your plan is the right one for you.

Guest: Michele Freeman, licensed professional counselor and PHA support group leader.   In this episode, Freeman provides an overview of the impact of stress and trauma to a person’s body while living with a chronic illness. She then leads listeners through a mindful meditation exercise designed to help manage stress. Additionally, she shares information about the importance of supportive care and why those in the PH community should consider joining a support group.  For more information on in-person and virtual support groups discussed in this episode, please visit https://phassociation.org/support/

Nadine Al-Naamani, assistant professor of medicine with the Division of Pulmonary, Allergy and Critical Care at University of Pennsylvania and past recipient of the PHA/ATS Research Fellowship and the Aldrighetti Research Award for Young Investigators; incoming Steering Committee Chair of the PHA Registry Matthew R. Lammi, associate professor of medicine of Johns Hopkins University and current Research Committee Chair and PHA Board Member   In this episode, Matthew R. Lammi, associate professor of medicine of Johns Hopkins University, current Research Committee Chair and Nadine Al-Naamani, assistant professor of medicine at University of Pennsylvania and past recipient of the PHA/ATS Research Fellowship and the Aldrighetti Research Award for Young Investigators continue the conversation on how research impacts the pulmonary hypertension community. Al-Naamani shares the progression of her career after receiving PHA award and the greater impact of her research on understanding the relationship between body muscle and fat and the underlying disease process in PH. For more information visit, https://phassociation.org/research/

Guests: Todd Bull, recipient of 2006 PHA/ATS Research Fellowship Award and incoming Scientific Leadership Council Chair, past Chair of the SLC Research Committee and Rachel Hopper, Associate Director, Pulmonary Hypertension Program, Lucile Packard Children’s Hospital Stanford recipient of Robyn Barst Pediatric PH Research and Mentoring Award   In this episode, Todd Bull, professor of medicine and director of University of Colorado Health, Pulmonary Vascular Disease Clinic and Rachel Hopper, associate director of the Pulmonary Hypertension Program at Lucile Packard Children’s Hospital Stanford discuss the significance of research in the field of pulmonary hypertension, with a focus on pediatric studies. They explore the impact of the Pulmonary Hypertension Association's research grant awards on advancing careers and improving patient care. Hopper shares her journey in pediatric cardiology after receiving the Robyn Barst Pediatric PH Research and Mentoring Award – a one-year mentorship opportunity for clinicians and researchers in the field of pediatric PH. She also shares the challenges faced in studying pulmonary hypertension in children, and the importance of continued support for research initiatives.

Guest: Paul Critser, MD, PhD; Pediatric Cardiologist, Heart Institute Cincinnati Children's Hospital Medical Center   In this episode, Critser provides an overview of Pediatric Pulmonary Hypertension and how it may differ from adults living with PH. Critser shares the unique challenges a child living with PH may face from diagnosis to long-term management. He shares his insights on the signs a parent should look for, the latest treatment advancements, research, and the importance of a multidisciplinary approach to care. Tune in to this episode to learn the essential information families should know about pediatric PH.

Guests: Jordan Whitson, MD, transplant pulmonologist, Duke Pulmonary and Specialty Services Clinic and Diane Ramirez, PHA Board of Trustees member and heart and lung transplant recipient   Transplantation may be a treatment option reserved for patients who are not improving on medical therapies. While transplantation can prolong survival, improve quality of life and offer a potential cure for pulmonary hypertension, it also carries risk of significant complications, and many factors need to be considered before going forward. In this episode of PH Insights, Whitson discusses what a transplant recipient can expect before and after surgery. Heart and lung transplant recipient, Diane Ramirez  joins him to share her experience with the transplant process and how she’s feeling a year post transplantation.

PHA’s Advocacy and Treatment Access program manager, Jaeger Spratt, guest-hosts this episode for Open Enrollment Season. They invited Kim Everett, a pulmonary arterial hypertension and lupus patient, to talk about her experiences with insurance over the years and share how current Medicare changes have improved her prescription experience. Guest Amy Niles, chief mission officer at the PAN Foundation, tells listeners everything you need to know about Medicare reforms for 2025. Jaeger and Amy also highlight resources like PHA’s Insurance Guide, webinars about Medicare on PHA Classroom, and other places to find additional resources like Medicare.gov (1-800-633-4227, TTY users: 1-877-486-2048), local State Health Insurance Assistance Programs (the SHIP program) for receive free, personalized health insurance counseling, and Patient Advocate Foundation’s case management services (800-532-5274)