Episode 361 - Derek Henderson
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 11/08/2021
Rey Adam Rodriguez - phaware® interview 569
I'm Aware That I'm Rare: the phaware® podcast
From Newlywed to Newly Diagnosed Six months after saying “I do,” Rey Adam Rodriguez was told he had pulmonary arterial hypertension. Rey shares his whirlwind journey through misdiagnosis, a new baby, and finding hope through expert care and peer support. My name is Rey Adam Rodriguez. I was diagnosed with pulmonary hypertension in 2022, 6 months after I just got married. The time of my diagnosis was a whirlwind for my family. I've always been a healthy young kid playing every sport, baseball, basketball, football, soccer growing up. A little after high school, I started running, noticing...
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Episode 569 - Rey Adam Rodriguez
I'm Aware That I'm Rare: the phaware® podcast
From Newlywed to Newly Diagnosed Six months after saying “I do,” Rey Adam Rodriguez was told he had pulmonary arterial hypertension. Rey shares his whirlwind journey through misdiagnosis, a new baby, and finding hope through expert care and peer support. 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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Sherry Rouse - phaware® interview 568
I'm Aware That I'm Rare: the phaware® podcast
She Was Prepared for Breast Cancer Not for a Rare, Incurable Disease At 30, Sherry Rouse went in for a breast cancer screening. What doctors found instead wasn’t cancer, but was something far rarer, and potentially fatal: idiopathic pulmonary arterial hypertension Sherry recounts the emotional rollercoaster of being blindsided by a rare illness and how she turned that chaos into advocacy and hope. My name is Sherry Rouse. I am from the Bay Area, California. I was diagnosed with idiopathic pulmonary arterial hypertension in 2016. I feel like my story is a little different than many of the...
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Episode 568 - Sherry Rouse
I'm Aware That I'm Rare: the phaware® podcast
She Was Prepared for Breast Cancer Not for a Rare, Incurable Disease At 30, Sherry Rouse went in for a breast cancer screening. What doctors found instead wasn’t cancer, but was something far rarer, and potentially fatal: idiopathic pulmonary arterial hypertension Sherry recounts the emotional rollercoaster of being blindsided by a rare illness and how she turned that chaos into advocacy and hope. 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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Nicholas Kolaitis, MD - phaware® interview 567
I'm Aware That I'm Rare: the phaware® podcast
The Insurance Plan You Never Knew You Needed What does a lung transplant have in common with car insurance? More than you'd think. Dr. Nicholas Kolaitis shares why seeing a transplant team early, even if you’re stable, can help protect your future. I'm Nicholas Kolaitis from the University of California, San Francisco. I'm a pulmonologist who does lung transplantation and pulmonary hypertension. The thing that I want to talk about today is lung transplant, and some of the issues surrounding lung transplant, as well as, why it's important to engage with the transplant team as a patient with...
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Episode 567 - Dr. Nicholas Kolaitis
I'm Aware That I'm Rare: the phaware® podcast
The Insurance Plan You Never Knew You Needed What does a lung transplant have in common with car insurance? More than you'd think. Dr. Nicholas Kolaitis shares why seeing a transplant team early, even if you’re stable, can help protect your future. 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: . #phawareMD
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Lala Juarez - phaware® interview 566
I'm Aware That I'm Rare: the phaware® podcast
The Most Dangerous Phrase in Rare Disease: “You Look Fine.” My name is Lala Juarez. I am a support group leader for Northern Utah. I’m also a patient. I was diagnosed with idiopathic pulmonary arterial hypertension in 2015. I had two years of being undiagnosed through, as a lot of patients know, like asthma, whooping cough, allergies. I went through oral medications. I tried the Sub-Q and we were not friends. It didn't work out. So I went to IV therapy. I had that for about two years. I had a double lung transplant consultation. The first one I took super seriously. I brought my best...
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Episode 566 - Lala Juarez
I'm Aware That I'm Rare: the phaware® podcast
The Most Dangerous Phrase in Rare Disease: “You Look Fine.” Diagnosed with idiopathic pulmonary arterial hypertension in her early 20s after years of being dismissed, Lala Juarez knows what it’s like to be told “you look fine” while fighting for breath. In this deeply honest conversation, she shares her journey from misdiagnosis and IV therapy to the shock of being told it was finally “time” for a double lung transplant. Now four years post-transplant, Lala reflects on rediscovering everyday joys, navigating loss and trauma, and why support groups became a lifeline that made her...
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Angela Brown - phaware® interview 565
I'm Aware That I'm Rare: the phaware® podcast
The Daily Discipline of PH: Living by the Liter and Label Most people don’t count every sip of water or every grain of salt. Angela Brown does. This episode dives into the daily discipline required to live with pulmonary hypertension—from navigating restaurant menus to surviving a exotic vacations in sweltering heat with strict fluid and sodium limits. My name is Angela Brown. I live in Toronto, Canada. In April of 2024, I was diagnosed with pulmonary hypertension. It started towards the end of 2022. I wasn't feeling well. My legs would swell up and I would have problems walking and...
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Episode 565 - Angela Brown
I'm Aware That I'm Rare: the phaware® podcast
The Daily Discipline of PH: Living by the Liter and Label Most people don’t count every sip of water or every grain of salt. Angela Brown does. This episode dives into the daily discipline required to live with pulmonary hypertension—from navigating restaurant menus to surviving a exotic vacations in sweltering heat with strict fluid and sodium limits. 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: .
info_outlineDerek Henderson is a #CTEPH patient from Toronto, Canada.
In this episode Derek discusses is road to diagnosis with a rare form of pulmonary hypertension, the mental challenge of PTE surgery and the misconceptions of Canada's socialized medicine program.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials