“Get Your Affairs in Order”: She Told Her Doctor She’d Be Back in 20 Years
I’m Aware That I’m Rare: the phaware® podcast
Episode 590 - Lynn Bouseman
In 1994, before there were any FDA approved therapies for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist suggested she might only have months to live. Lynn looked him in the eye and said, “No,” she had two small daughters waiting at home. Survival would require one thing above all else: a refusal to surrender.
7th WSPH Task Force 1:The Patient Perspective
I’m Aware That I’m Rare: the phaware® podcast
Episode 526 - Hall Skaara
Hall Skaara, representing PHA Europe, brought the patient perspective to the forefront at the World Symposium on Pulmonary Hypertension, joining other members of Task Force 1. PHA Europe was well-represented with delegates including Eva Otter, Monika Tschida, Natalia Maeva, Tadeja Ravnik, and Nina Kobler. This prestigious event gathered over 1,500 of the brightest minds in the field of pulmonary hypertension, offering a unique opportunity for patients and professionals to collaborate and share insights, as well as for patient associations to network.
Nearly 20 Years With PH: Finding Her Voice Through Advocacy and Writing
I’m Aware That I’m Rare: the phaware® podcast
Episode 509 - Jen Cueva
Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community.
From Heart Failure to Hope: One Woman’s Fight to Survive PH
I’m Aware That I’m Rare: the phaware® podcast
Episode 507 - Jolie Lizana
Jolie Lizana is a pulmonary hypertension (PH) survivor and advocate. Despite enduring severe heart failure and lengthy hospitalizations, Jolie credits her medical background, determination, and the love for her child for pushing her to survive and adapt. Jolie now raises awareness through her website, www.breathtakingawareness.com, and has contributed to creating EMS protocols for PH patients, showing her dedication to empowering others with hope and resources.
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.
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.
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.