PH Insights

Resilience in the Face of Adversity: Keisha's PH Story

Guest: Keisha Jackson, PH patient and support group member

In this episode, we celebrate PH Insights’ one-year anniversary with Keisha Jackson, who shares her inspiring journey of resilience while living with pulmonary hypertension, scleroderma and lupus. She reflects on the daily challenges of managing her health, raising a family and coping with the often-unseen toll these conditions take on her personal and social life.  

Jackson emphasizes the importance of self-advocacy and shares how she continues to find her voice while living with multiple chronic illnesses.  

For more information on PH and associated conditions, visit PHA’s Associated Disease Resources page.

Help Us Breathe: PH Patients Advocate for Oxygen Reform

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

Be Ready for Anything - Facing Emergencies with PH

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.

Five Tips for Traveling with a Chronic Illness

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.

Two Conditions, One Journey: Understanding PAH and HHT

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

 

Building a Supportive Pulmonary Hypertension Community

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/   

Find Community: Connecting with people who get it

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/   

Sarcoidosis-Related Pulmonary Hypertension

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.