Episode 473 - Alvin Rocha MSN RN CPN PHN
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 06/17/2024
Nicole Fitzgerald - phaware® interview 555
I'm Aware That I'm Rare: the phaware® podcast
One Teacher’s Unexpected Battle with a Silent Killer Nicole Fitzgerald was a full-time special ed teacher juggling work, family, and a big move—until breathlessness and fatigue nearly took her life. What started as stress turned into a life-threatening diagnosis. This is the story of how she faced pulmonary hypertension head-on and redefined her purpose. My name is Nicole Fitzgerald. I am 43 years old. I'm originally from Los Angeles, but I now live in Oklahoma City. I was diagnosed in February of 2018. It was kind of a bizarre road to diagnosis. At the time, we were living in Southern...
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Episode 555 - Nicole Fitzgerald
I'm Aware That I'm Rare: the phaware® podcast
One Teacher’s Unexpected Battle with a Silent Killer Nicole Fitzgerald was a full-time special ed teacher juggling work, family, and a big move—until breathlessness and fatigue nearly took her life. What started as stress turned into a life-threatening diagnosis. This is the story of how she faced pulmonary hypertension head-on and redefined her purpose. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story:
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Jean Elwing, MD phaware® interview 554
I'm Aware That I'm Rare: the phaware® podcast
Telehealth Is Ending: What That Means for PH Patients Telehealth use surged during COVID, but what happens next? Dr. Jean Elwing discusses the rapid expansion of telemedicine in pulmonary hypertension, the upcoming expiration of COVID-era telehealth funding in 2026, and why licensure and reimbursement policies could dramatically affect patient care. This episode highlights what's at stake for rare disease patients and why advocacy and awareness are essential to sustaining virtual care options. My name is Dr. Jean Elwing, and I’m a Professor of Medicine and the Director of the Pulmonary...
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Episode 554 - Jean Elwing, MD
I'm Aware That I'm Rare: the phaware® podcast
Telehealth Is Ending: What That Means for PH Patients Telehealth use surged during COVID, but what happens next? Dr. Jean Elwing discusses the rapid expansion of telemedicine in pulmonary hypertension, the upcoming expiration of COVID-era telehealth funding in 2026, and why licensure and reimbursement policies could dramatically affect patient care. This episode highlights what's at stake for rare disease patients and why advocacy and awareness are essential to sustaining virtual care options. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: ...
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Jasmine Wells - phaware® interview 553
I'm Aware That I'm Rare: the phaware® podcast
You Can Grieve and Still Fight: Love, Loss, and Living with PAH She cried for the life she lost. Then, she fought for the one she has. PAH patient, Jasmine Wells discusses what it really means to grieve the old you while finding purpose in the new. From navigating relationships, infections, and fear of transplant, to leading support groups and fighting misinformation. My name is Jasmine Wells. I grew up in Jackson, Michigan. I moved to Texas when I was married. Then, I moved back with my ex to Michigan. We were living in Grand Rapids. I was first diagnosed, it was a misdiagnosis of...
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Episode 553 - Jasmine Wells
I'm Aware That I'm Rare: the phaware® podcast
You Can Grieve and Still Fight: Love, Loss, and Living with PAH She cried for the life she lost. Then, she fought for the one she has. PAH patient, Jasmine Wells discusses what it really means to grieve the old you while finding purpose in the new. From navigating relationships, infections, and fear of transplant, to leading support groups and fighting misinformation. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story:
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Kevin Allen - phaware® interview 552
I'm Aware That I'm Rare: the phaware® podcast
The Pulse of a Fighter: Survival, Stigma, and Shaking Up HealthcareThey told him he had months to live. He used them to rewrite the rules. Kevin Allen survived near-death, systemic medical neglect, and an invisible disability most physicians don’t understand. Today, he’s pushing policy, pressuring universities, and pioneering new models of PH patient-centered care. My name is Kevin Allen. I am a psychological science pre-med major at Texas Tech University in Lubbock, Texas. I was diagnosed with pulmonary hypertension on June 15th, 2020 when I was flatlining in ICU at 3:00 AM. I woke up to...
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Episode 552 - Kevin Allen
I'm Aware That I'm Rare: the phaware® podcast
The Pulse of a Fighter: Survival, Stigma, and Shaking Up HealthcareThey told him he had months to live. He used them to rewrite the rules. Kevin Allen survived near-death, systemic medical neglect, and an invisible disability most physicians don’t understand. Today, he’s pushing policy, pressuring universities, and pioneering new models of PH patient-centered care. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story:
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Russel Hirsch, MD - phaware® interview 551
I'm Aware That I'm Rare: the phaware® podcast
Why Families Belong at the Table: PHriends of the PPHNet Dr. Russel Hirsch breaks down the core pillars of the , from shared research to consistent care standards, and explains why the next chapter in pediatric pulmonary hypertension care must be written with families, not just for them through the family-led committee. My name is Russel Hirsch. I'm a physician, pediatrician, pediatric cardiologist, and I work out of Cincinnati Children's Hospital. I've been in the United States now going on about 33 years, actually. I grew up in South Africa and trained at the University of Cape Town. Then,...
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Episode 551 - Russel Hirsch, MD
I'm Aware That I'm Rare: the phaware® podcast
Why Families Belong at the Table: PHriends of the PPHNet Dr. Russel Hirsch breaks down the core pillars of the , from shared research to consistent care standards, and explains why the next chapter in pediatric pulmonary hypertension care must be written with families, not just for them through the family-led committee. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: #phawareMD #PPHNet
info_outlineAlvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the World PH Symposium to learn more ways to help the patients and families he cares for.
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: info@phaware.com