Living Boldly With PH: The Power of Self-Advocacy
I’m Aware That I’m Rare: the phaware® podcast
Episode 502 - Kaitlyn Salongo
Kaitlyn Salonga shares her journey of resilience and advocacy while living with pulmonary hypertension (PH). Kaitlyn recounts her fight for personal autonomy, including a successful battle to secure surgery for her reproductive health after initial denials due to weight and health concerns. Through her triumphs, she highlights the importance of advocating for oneself in the face of medical and societal challenges. Her story is a powerful testament to embracing one’s identity, breaking down stigma, and showing that life with PH can be fulfilling and bold.
Misdiagnosed and Searching for Answers: The Long Road to a PH Diagnosis
I’m Aware That I’m Rare: the phaware® podcast
Episode 499 - Tanya Stinson
Tanya Stinson shares her journey of being diagnosed with pulmonary hypertension (PH) after persistent symptoms and misdiagnoses. Her struggle highlights the difficulty of finding the right diagnosis and the emotional toll of living with a rare, chronic disease. Tanya’s experience underlines the fear, mental challenges, and hope intertwined in navigating PH, inspiring others to seek support and find solace in community, showing that even in isolation, they are not alone.
19 Years With PH: Turning Isolation Into a Global Community
I’m Aware That I’m Rare: the phaware® podcast
Episode 498 - Hall Skaara
Hall Skaara, a resilient PH patient and founder of the Norwegian Association for Pulmonary Hypertension, recounts his 19-year journey living with idiopathic pulmonary hypertension. He shares how he transformed the challenges of the pandemic into an innovative opportunity by helping create the Bel Air Center, a virtual global PH community space. The Bel Air Center aims to foster global connections, support, and resources for patients, caregivers, and healthcare professionals.
She Never Thought This Life Was Possible: A Journey From PAH to Transplant
I’m Aware That I’m Rare: the phaware® podcast
Episode 496 - Natalie Roy
Natalie Roy is a double lung transplant survivor living in Canada. She was diagnosed with pulmonary arterial hypertension (PAH) in 2005 and received her transplant in 2017. After her transplant, Natalie experienced a difficult initial recovery but felt amazing once she started healing. The first two years were cautious, but she was able to achieve many milestones she never thought possible, including getting married, playing sports, and changing careers.
When a “Simple Infection” Was Something More: A CTEPH Story
I’m Aware That I’m Rare: the phaware® podcast
Episode 495 - Maureen Harper
Maureen Harper, a CTEPH patient from Canada, shares her journey with this rare condition. She initially thought she had an infection in her leg, but further tests revealed enlarged pulmonary arteries and multiple blood clots in her lungs. After being diagnosed with pulmonary hypertension, she underwent a complex surgery in Toronto to attempt to remove the clots. Maureen continues to work full-time as a pharmacy technician, remains active with her family and Girl Guide unit, and maintains a positive outlook, choosing to focus on the positives rather than dwell on the negatives.
When Every Moment Matters: A Journey With PAH and Pulmonary Fibrosis
I’m Aware That I’m Rare: the phaware® podcast
Episode 494 - Lynette Chambers
Lynette Chambers, a 9-year PAH (pulmonary arterial hypertension) patient, has also been diagnosed with pulmonary fibrosis (PF). She shares her journey, from struggling with daily activities to being admitted to the hospital with severely low oxygen levels. Lynette discusses the emotional challenges of facing a terminal illness and the difficulty of balancing work and family time. Despite the hard reality, Lynette emphasizes the importance of gratitude, making others feel better, and being the best version of oneself. She finds strength in her family, especially her grandchildren, and strives to create lasting memories and make a positive impact on those around her.
Why the Physician-Patient Relationship Matters in Clinical Trials
I’m Aware That I’m Rare: the phaware® podcast
Episode 493 - John Kingrey, MD and Nicole Fitzgerald
John Kingrey, MD, Director of the INTEGRIS Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study). #GossamerBioPartner #sponsored
Living on High-Flow Oxygen: A Patient’s Journey With Pulmonary Hypertension
I’m Aware That I’m Rare: the phaware® podcast
Episode 492 - Kathy Downey
Canadian patient, Kathy Downey, recounts her four-and-a-half-year journey with pulmonary hypertension (PH). Kathy shares the challenges of living with the condition, including reliance on high-flow oxygen and the emotional toll it has taken. Despite these obstacles, she has become a passionate advocate, educating others about PH and serving as an ambassador for PHA Canada. Throughout, Kathy highlights the crucial support from her husband and the difficulties caregivers face.