PH Insights

Living with Sickle Cell Disease and Pulmonary Hypertension

Guests: James H. Tarver III, MD, cardiologist at AdventHealth Medical Group – Central Florida Division; and Nicole Creech, PHA Board of Trustees member, SCD and PH patient, and support group leader

 

On this episode of PH Insights, guests Nicole Creech and James Tarver explore the connection between sickle cell disease and pulmonary hypertension. They discuss the complexities of diagnosis, the challenges faced by patients and the role of advocacy and resilience in managing both chronic conditions.

Tune in to learn about treatment options, the importance of a supportive health care team, and the hope for future advancements in care.

For more information, download the Pulmonary Hypertension & Sickle Cell Disease brochure.

How the SOAR Act Can Keep Patients' Oxygen Flowing

Guests: Patti Tripathi, ATS Breathe Easy host; Susan Jacobs, RN, MS, research nurse manager at Stanford University; and Jaeger Spratt, MSW, advocacy and treatment access program manager

The Supplemental Oxygen Access Reform Act is pending legislation that would establish requirements for the payment and provision of supplemental oxygen and related services under Medicare. But how would this legislation affect patients, and how is the American Thoracic Society Nursing Assembly leading the charge in advocating for their needs? Guest host Patti Tripathi explores these questions with Susan Jacobs and Jaeger Spratt.

This episode is the first in a two-part collaboration with the ATS Breathe Easy podcast. Visit “Help Us Breathe: PH Patients Advocate for Oxygen Reform” to listen to part two. 

To learn more about PHA’s advocacy efforts, visit the  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

 

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/