Life Continues: Working with PH

Guests: Rebecca Calverly, PH Patient, PHA Australia; Hall Skaara, PH Patient, PHA EuropeOn this episode of PH Insights, Rebecca Calverly and Hall Skaara lead a discussion on the state of care for pulmonary hypertension patients living in Australia and Norway. Join them as they share their personal experiences and insights into healthcare access, patient advocacy and the challenges faced receiving a PH diagnosis and determining treatment.

Guest: Lauren Janzen, MSN, RN, PH PatientOn this episode of PH Insights, Lauren Janzen joins host,Jenna Olitsky, to share her personal journey of living with pulmonary hypertension. She reflects on receiving her diagnosis at 21 years old and the impact it has had on her life. Janzen also discusses the importance of resilience, community support and self-care while navigating the challenges that come with PH. Listen to hear her words of encouragement, reminding everyonethat a fulfilling life is possible after diagnosis.

Guest: Samichiė Thomas, PAH patientOn this episode of PH Insights, guest Samichiė Thomas joins host Angela Golden to discuss her experience navigating her recent pulmonary arterial hypertension diagnosis while living with multiple chronic illnesses Thomas shares her experience managing difficult conversations with her family, the importance of self-advocacy and the challenges faced after years of misdiagnosis. She emphasizes the need for community support and the significance of addressing the unique challenges faced by patients, particularly within marginalized groups.

Guest: Akshay Muralidhar, MD, co-director Pulmonary Hypertension Program at Arizona Pulmonary SpecialistsOn this episode of PH Insights, Akshay Muralidhar, MD, Arizona Pulmonary Specialists, joins host, Jenna Olitsky, to explore the complex intersection of pulmonary hypertension and hereditary hemorrhagic telangiectasia. Olitsky and Muralidhar break down the unique symptoms and complications that arise when the two conditions coexist.Muralidhar also discusses the importance of multidisciplinary care and how centers of excellence offered by organizations such as PHA and CureHHT provide the comprehensive support needed for improved quality of life. Listen today to learn how the latest in treatment advancements and research are reshaping the landscape of care for those living with PH and HHT. Download PHA’s Pulmonary Hypertension and Hereditary Hemorrhagic Telangiectasia brochure to learn more.

Guest:Nicole Creech, PHA Board of Trustees member, PH patient, and support group leaderOn this episode of PH Insights, Nicole Creech revisits the podcast to share more about her 18-year journey of managing her pulmonary hypertension diagnosis on pump therapy. She discusses how she found support within the PH community and helps others turn their struggles into empowerment to live life fully. Tune in to hear how Creech discovered that there’s so much more to life beyond a diagnosis*. Visit Treatments for Pulmonary Hypertension to learn about the targeted treatment options for those living with PH.  *Every pulmonary hypertension journey is unique. The Pulmonary Hypertension Association encourages patients to work closely with their health care team, adhere to prescribed treatments and discuss any concerns with their providers. Personal experiences shared in this episode should not replace medical advice, nor should they be interpreted as an endorsement of not following a physician's recommendations.

Guests:Charlie Burger, MD; Greg Elliott, MD, MACP; Akshay Muralidhar, MD; Naomi Habib, MDOn this special episode, host Jenna Olitsky introduces thenew medical advisory team for PH Insights. Experts Naomi Habib, Charles Burger, Akshay Muralidhar and Greg Elliott (who will serve as the team’s senior advisor) will bring clinical insight and expert perspectives to the podcast.Listen in as they share their journeys in PH care, reflecton how the field has evolved to improve quality of life for patients and discuss what excites them most about supporting the PH community.Read more about the medical advisory team.

Host: Jenna Olitsky, PAH and HHT patient, PHA’s Patient and Caregiver Education Committee member.Guest: Allison Dsouza, a PAH patient, nurse and PHA Board member. On this episode of PH Insights, Allison Dsouza discusses her journey pursuing a career in nursing after being diagnosed with pulmonary arterial hypertension as a teenager. Together, Olitsky and Dsouza explore how Allison has balanced treatment, managed symptoms and navigated the realities of living with a chronic illness while building hercareer. They also discuss self-advocacy in the workplace and adapting to life's unexpected changes to find balance.

Guests:Debbie Charlton, Scleroderma patient, advocate and support groupleaderKaren Brown, Scleroderma patient and advocateOn this episode of PH Insights, host Jolie Lizana discusses scleroderma with guests Debbie Charlton and Karen Brown, who are both patients and advocates.They share their firsthand experiences living withscleroderma, its symptoms and the challenges to receiving an accurate diagnosis.Brown and Charlton highlight the importance of advocacy and community support for rare disease patients as they navigate the condition themselves. Explore Support GroupsThe Pulmonary Hypertension Association offers in-person, virtual and Facebook support groups. Find a support program that works for you, visit ⁠https://phassociation.org/support/⁠   National Scleroderma Foundation offers more than 40 Foundation-affiliated scleroderma support groups supported by more than one hundred facilitatorsaround the country.

Guests: Steven H. Abman, MD, professor, Department of Pediatrics, director, Pediatric Heart Lung Center University of Colorado School of Medicine and Children's Hospital ColoradoGreg Elliott, MD, MACP, professor of medicine, University of Utah, emeritus professor of medicine, Intermountain HealthKaren A. Fagan, MD, chair, Department of Medicine, interim chair, department of family and community medicine, professor of medicine, The George Washington University School of Medicine and Health Sciences Paul B. Yu, MD, PhD, cardiovascular medicine specialist at Brigham and Women’s Hospital, associate professor of medicine at Harvard Medical School, director, Cardiovascular Research Center, On the latest episode of PH Insights, we hear the final part of the two-part episode focusing on PHA’s continued support pulmonary hypertension research. Researchers and PHA contributors Steven Abman, Greg Elliott, Karen Fagan and Paul Yu, they shift focus to the future of PH care including advances in science and strategies for fostering innovation and collaboration.

Guest: Neal McDermott, pulmonary arterial hypertension and scleroderma patientOn this episode of PH Insights, Neal McDermott, a patient navigating scleroderma and pulmonary arterial hypertension, shares his journey from diagnosis to managing multiple chronic illnesses. McDermott’s story offers hope and encouragement, emphasizing resilience and the potential for improved quality of life through treatment and transplant evaluation.For more information, visit Pulmonary Hypertension and Scleroderma