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.
Rare Disease in Rural Minnesota: A Mother’s Journey Through PH & HHT
I’m Aware That I’m Rare: the phaware® podcast
Episode 491 - Sarah Stone
Sarah Stone shares the story of her family’s journey with rare medical conditions in North Central Minnesota. Sarah’s life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family’s genetic predisposition to HHT. As their medical challenges unfolded with two of her three children facing life-threatening conditions, Sarah discusses the trials of managing these complex issues while living in a remote area. She delves into the lessons learned, the importance of specialized medical care, and the determination to live life fully despite the circumstances.