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 [email protected]

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.

Guest: Jenna Olitsky, PAH and HHT patient, PHA’s Patient and Caregiver Education Committee member

On this episode of PH Insights, Jenna Olitsky shares five travel tips she’s learned while living with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia. She discusses the unique challenges a person with rare illness faces, including navigating accessibility and managing her medications across time zones and international borders. She also shares lessons learned through trial and error, offering practical advice for others with chronic illnesses.

Download PHA’s Travel Checklist to help prepare for your next trip.

Guests:

Scott E. Olitsky, MD, MBA, Global Center of Excellence outreach director, Cure HHT;

Marla Olitsky, PH and HHT patient of over 20 years;

Monica Penaranda, PH and newly diagnosed HHT patient

On this episode of PH Insights, guest host Scott Olitsky explores the connection between pulmonary hypertension and hereditary hemorrhagic telangiectasia. Olitsky, along with guests Marla Atkins and Monica Penaranda, discusses the signs and symptoms of both conditions and the role genetic testing plays in early diagnosis. Atkins and Penaranda also share the differences and similarities in their PH and HHT journeys.

Hear Monica’s full PH story by listening to Filling in the Blanks: Understanding Pulmonary Hypertension, Part 2

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: Abby Sickles, program manager, Patient and Caregiver Programs, Pulmonary Hypertension Association

In this episode of PH Insights, Abby Sickles discusses the various Pulmonary Hypertension Association support programs available to individuals affected by pulmonary hypertension. She shares insights into peer mentoring, support groups as well as resources for caregivers, emphasizing that no one has to navigate their PH journey 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.

Guest: Mitzi McIver-LaBarge, PHA Peer Mentor

On this episode, peer mentor Mitzi McIver-LaBarge shares her journey as a parent and caregiver following her daughter’s pulmonary hypertension diagnosis at 1 year old. In honor of Volunteer Appreciation Month, Mitzi discusses the importance of connection, the power of community and how volunteering with the Pulmonary Hypertension Association helped her find purpose and support. She also offers insight into how others can get involved and make a difference.  

To see volunteer opportunities, visit PHA’s Take Action page.

To find a peer mentor, visit PHA’s Peer Mentor page.

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.