Kathy Downey - phaware® interview 492
I'm Aware That I'm Rare: the phaware® podcast
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. My name is Kathy Downey. I am from Calgary, Alberta. I have been a PH patient for four and a half years, and it's been...
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Episode 492 - Kathy Downey
I'm Aware That I'm Rare: the phaware® podcast
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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware...
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Sarah Stone - phaware® interview 491
I'm Aware That I'm Rare: the phaware® podcast
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...
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Episode 491 - Sarah Stone
I'm Aware That I'm Rare: the phaware® podcast
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...
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Maria Morais - phaware® interview 490
I'm Aware That I'm Rare: the phaware® podcast
Maria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventually linked to pulmonary hypertension. Her story reflects on the psychological impact of chronic illness and the empowerment gained from community support and self-advocacy. My name is Maria Morias and I live just outside of Toronto Ontario in Canada....
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Episode 490 - Maria Morais
I'm Aware That I'm Rare: the phaware® podcast
Maria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventually linked to pulmonary hypertension. Her story reflects on the psychological impact of chronic illness and the empowerment gained from community support and self-advocacy. Learn more about pulmonary hypertension trials at . Follow us on social...
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David Lake - phaware® interview 489
I'm Aware That I'm Rare: the phaware® podcast
David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His story is a testament to resilience and the quest for better treatment through clinical trials. My name is David Lake. I am from Oakley, Utah, which is a little community just east of Park City at an elevation of 6,500 feet. I have pulmonary arterial hypertension....
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Episode 489 - David Lake
I'm Aware That I'm Rare: the phaware® podcast
In this episode, David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His story is a testament to resilience and the quest for better treatment through clinical trials. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story:
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Lori Myers - phaware® interview 488
I'm Aware That I'm Rare: the phaware® podcast
Lori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a "blue baby" and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diagnosis. She emphasizes the importance of listening to one's own body and following medical advice. Lori finds strength in her family, particularly her grandchildren. My name is Lori Myers. I'm originally from Upstate New York, Adirondack Mountains. I...
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Episode 488 - Lori Myers
I'm Aware That I'm Rare: the phaware® podcast
Lori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a "blue baby" and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diagnosis. She emphasizes the importance of listening to one's own body and following medical advice. Lori finds strength in her family, particularly her grandchildren. Learn more about pulmonary hypertension trials at . Follow us on social...
info_outlineIn this episode, Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and choosing the best therapies, it is not the best predictor of long-term outcomes. Dr. Ivy emphasizes that the decision to perform a second heart catheterization should be individualized and discussed with the patient's pulmonary hypertension physician. He also mentions that cardiac MRI is becoming more valuable in assessing right heart function and can be used as an alternative to heart catheterization in certain cases.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: [email protected] #phawareMD #PPHNet @PPHNet