Episode 473 - Alvin Rocha MSN RN CPN PHN
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 06/17/2024
Episode 584 - Christine Ryan
I'm Aware That I'm Rare: the phaware® podcast
She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient For Christine Ryan, being ill wasn’t the hardest part, letting others care for her was. Diagnosed with pulmonary hypertension after years of managing scleroderma, she struggled not with weakness, but with surrender. Used to pushing through pain for everyone else, Christine had to relearn how to listen to her body and accept limits without losing her sense of purpose. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like,...
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Amanda Chickie - phaware® interview 583
I'm Aware That I'm Rare: the phaware® podcast
The Dream She Lost at 18 and the Child Who Gave It Back One of the first questions Amanda Chickie asked after her pulmonary hypertension diagnosis wasn’t about life expectancy, it was about motherhood. The answer devastated her. Told that pregnancy was too dangerous, Amanda reflects on what it means to mourn children you’ll never carry, how that grief shaped her mental health, and how hope slowly returned in a form she never expected. I'm Amanda Chickie. I'm 36 years old. I'm from Moncton, New Brunswick, Canada. My connection to pulmonary hypertension, I was diagnosed when I was 18 with...
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Episode 583 - Amanda Chickie
I'm Aware That I'm Rare: the phaware® podcast
The Dream She Lost at 18 and the Child Who Gave It Back One of the first questions Amanda Chickie asked after her pulmonary hypertension diagnosis wasn’t about life expectancy, it was about motherhood. The answer devastated her. Told that pregnancy was too dangerous, Amanda reflects on what it means to mourn children you’ll never carry, how that grief shaped her mental health, and how hope slowly returned in a form she never expected. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like,...
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Lisa Harder - phaware® interview 582
I'm Aware That I'm Rare: the phaware® podcast
A New Mother’s Greatest Fear: “Am I Going to See My Daughter Grow Up?” When Lisa Harder became a new mom, she never imagined that shortness of breath would lead to a rare, life-altering diagnosis. Lisa shares how uncertainty nearly stole her future and how breakthrough treatment, advocacy, and hope gave it back. My name is Lisa Harder. I live in Edmonton, Alberta, and my connection to pulmonary hypertension is that I am a patient. I got diagnosed in 2024 after being short of breath and that sort of thing. I had my daughter, literally right before Christmas in 2022. I would go to the...
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Episode 582 - Lisa Harder
I'm Aware That I'm Rare: the phaware® podcast
A New Mother’s Greatest Fear: “Am I Going to See My Daughter Grow Up?”When Lisa Harder became a new mom, she never imagined that shortness of breath would lead to a rare, life-altering diagnosis. Lisa shares how uncertainty nearly stole her future and how breakthrough treatment, advocacy, and hope gave it back. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Cathleen Harrington - phaware® interview 581
I'm Aware That I'm Rare: the phaware® podcast
From Wedding Bells to a Life-Altering Diagnosis Cathleen Harrington was young, athletic, and newly engaged when pulmonary hypertension changed everything. Twenty-one years later, after surrogacy, clinical trials, a lung transplant, and battles with rejection she’s still here, still fighting, and still building a life around gratitude, hope, and her children. My name is Cathleen Harrington. I was diagnosed with idiopathic pulmonary hypertension 21 years ago. I was a very active person. I thought I was totally healthy. I had never had any other health issues. I was a hiker, biker, runner. I...
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Episode 581 - Cathleen Harrington
I'm Aware That I'm Rare: the phaware® podcast
From Wedding Bells to a Life-Altering Diagnosis Cathleen Harrington was young, athletic, and newly engaged when pulmonary hypertension changed everything. Twenty-one years later, after surrogacy, clinical trials, a lung transplant, and battles with rejection she’s still here, still fighting, and still building a life around gratitude, hope, and her children. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Evan Holm, LMSW, SWCM - phaware® interview 580
I'm Aware That I'm Rare: the phaware® podcast
Why a Social Worker Might Be the Most Important Person on a PH Care Team When pulmonary hypertension finally gets a name, fear rushes in fast. Social Worker, Evan Holm, is often the first person patients lean on after their right heart catheterization at University of New Mexico Hospital. As a support group leader for PAH, he is passionate about providing emotional and educational support to patients and their families while assisting them in navigating the healthcare system. His work proves that access, advocacy, and compassion can be just as lifesaving as medication. I'm Evan Holm. I'm the...
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Episode 580 - Evan Holm, LMSW, SWCM
I'm Aware That I'm Rare: the phaware® podcast
Why a Social Worker Might Be the Most Important Person on a PH Care Team When pulmonary hypertension finally gets a name, fear rushes in fast. Social Worker, Evan Holm, is often the first person patients lean on after their right heart catheterization at University of New Mexico Hospital. As a support group leader for PAH, he is passionate about providing emotional and educational support to patients and their families while assisting them in navigating the healthcare system. His work proves that access, advocacy, and compassion can be just as lifesaving as medication. Learn more about...
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Laura Camponeschi - phaware® interview 579
I'm Aware That I'm Rare: the phaware® podcast
Who Cares for the Caregiver When Everyone Else Comes First? Behind every pulmonary hypertension patient is someone quietly running on empty. Laura Camponeschi pulls back the curtain on caregiver burnout — the emotional, mental, and physical toll that builds when someone is “always on” and never feels safe stepping away. I am Laura Camponeschi. I am the medical office coordinator for the Johns Hopkins Pulmonary Hypertension Program. I have been with the office since 2009, so about 16 years, and I am privileged to be the support group leader for the Johns Hopkins PHA support...
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