Telehealth Is Ending: What That Means for PH Patients
I’m Aware That I’m Rare: the phaware® podcast
Episode 554 - Jean Elwing, MD
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.
You Can Grieve and Still Fight: Love, Loss, and Living with PAH
I’m Aware That I’m Rare: the phaware® podcast
Episode 553 - Jasmine Wells
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.
The Pulse of a Fighter: Survival, Stigma, and Shaking Up Healthcare
I’m Aware That I’m Rare: the phaware® podcast
Episode 552 - Kevin Allen
They 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.
Why Families Belong at the Table: PHriends of the PPHNet
I’m Aware That I’m Rare: the phaware® podcast
Episode 551 - Russell Hirsch, MD
Dr. Russel Hirsch breaks down the core pillars of the PPHNet, 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 PHriends family-led committee.
Best Practices for Managing Cough in PAH Patients Receiving Inhaled Therapies.
I’m Aware That I’m Rare: the phaware® podcast
Episode 550 - Jennifer Keeley, DPN and Mary Whittenhall, MSN
Jennifer Keeley and Mary Whittenhall, experienced nurse practitioners in the field of pulmonary hypertension, discuss the management of cough in patients receiving inhaled therapies for pulmonary hypertension and interstitial lung disease.
Fighter to survivor: Ashlee Bambino’s battle beyond the ring.
I’m Aware That I’m Rare: the phaware® podcast
Episode 549 - Ashlee Gambino
In this gripping episode, Ashlee “The Mobwife” Gambino shares her journey from a fierce MMA and professional boxing career to battling idiopathic pulmonary arterial hypertension. Discover how she turned her fighter’s mindset into a lifeline, navigating the unimaginable loss of her daughter, Katana, and fighting for her life with relentless determination.
Scars and Survival: Rebuilding Life After a Devastating Diagnosis
I’m Aware That I’m Rare: the phaware® podcast
Episode 548 - Sophia Esteves
After countless hospital stays, new medications, and near-breaking points, Sophia Esteves found the reason she wanted to live — and it wasn’t just for herself. This episode dives into her spiritual and emotional transformation from patient to powerhouse advocate, and how she now helps others reclaim hope through honesty and grit.
The Silent Rise of Chronic Pulmonary Embolism and the Tech That’s Changing Everything
I’m Aware That I’m Rare: the phaware® podcast
Episode 547 - Richard Channick, MD
From portable ECMO to catheter breakthroughs, the treatment of pulmonary embolism has come a long way. Dr. Richard Channick takes us behind the scenes of cutting-edge interventions and shares the empowering truth: even community hospitals now have lifelines to expert centers. The care you need might be closer than you think.
The One Type of PH You Can Actually Cure
I’m Aware That I’m Rare: the phaware® podcast
Episode 546 - Jenny Yang, MD
Dr. Jenny Yang dives into the rare but life-changing world of CTEPH, the only form of pulmonary hypertension that may be curable. From early warning signs to surgical options, this episode explains why ruling out CTEPH should be step one for any PH diagnosis.
The Diagnosis Delay That’s Still Hurting Patients
I’m Aware That I’m Rare: the phaware® podcast
Episode 545 - Victor Test, MD, FCCP
Despite better tools and more awareness, people with PH are still being diagnosed too late. Dr. Victor Test opens up about the biggest barrier in PH today: getting diagnosed on time. Learn why shortness of breath is often dismissed and how both patients and doctors can work together to catch pulmonary hypertension earlier.
How TBX4Life Is Fueling a Global Collaboration
I’m Aware That I’m Rare: the phaware® podcast
Episode 544 - LaRae Hacker
LaRae Hacker never set out to become a rare disease advocate — but when her daughter’s TBX4 diagnosis left her feeling helpless, she found power in connection. Discover how TBX4Life became her anchor in uncertainty and why she believes parent-led advocacy is the key to progress in rare disease research.
How I Survived Meth Addiction, Lung Failure, and Found Purpose
I’m Aware That I’m Rare: the phaware® podcast
Episode 543 - Anthony Carrasco
Anthony Carrasco was a meth addict by 15, and nearly dead by 35. Diagnosed with PH after years of drug use, his story spiraled from homelessness to hospice. But a double lung transplant and a deep surrender to recovery transformed everything.
Treating Meth-Associated PAH Without Judgment
I’m Aware That I’m Rare: the phaware® podcast
Episode 542 - Brandon Jakubowski, MD
Dr. Brandon Jakubowski takes us into the underrecognized world of stimulant-induced pulmonary arterial hypertension. From misdiagnoses to under-prescribing life-saving therapies, he lays out the systemic gaps and stigmas preventing patients from getting the care they need.
The Face of Addiction Isn’t Who You Think It Is
I’m Aware That I’m Rare: the phaware® podcast
Episode 541 - Nicholas Kolaitis, MD
Once thought to be a West Coast issue, methamphetamine-associated pulmonary hypertension is now a nationwide and global crisis. Dr. Nicholas Kolaitis reveals how building trust with meth associated-PAH patients can lead to incredible turnarounds, including sobriety, trial participation, and successful transplant.
How Stigma Blocks Meth-PAH Treatment and How to Stop It
I’m Aware That I’m Rare: the phaware® podcast
Episode 540 - Peter Leary, MD
Patients with methamphetamine-associated-PAH often arrive at clinics already carrying heavy shame. But shame shouldn’t be part of their medical history. In this compelling episode, Dr. Peter Leary explains how stigma — from both society and providers — can delay life-saving care. Learn how a change in mindset, language, and compassion can transform outcomes for a neglected and growing patient population.
The Hidden Epidemic: Meth and PH
I’m Aware That I’m Rare: the phaware® podcast
Episode 539 - Vinicio de Jesus Perez, MD
Meth-PAH is on the rise across the United States, yet many patients are not receiving the treatment they need. Dr. Vinicio de Jesus Perez discusses the shifting demographics of meth users, the challenges of treating addiction in cardiopulmonary care, and the need for compassionate, stigma-free screening.
The Hidden PH Epidemic: What Methamphetamine Use Is Teaching Us About Pulmonary Hypertension
I’m Aware That I’m Rare: the phaware® podcast
Episode 538 - John Kingrey, MD
Dr. John Kingrey exposes the rising crisis of meth-induced pulmonary hypertension, a condition spreading fast across the U.S. He challenges misconceptions, highlights urgent research, and stresses the need for compassion in treating both PAH and addiction.
PH Care Networks: Improving the Timeliness of Care
I’m Aware That I’m Rare: the phaware® podcast
Episode 537 - Kari Gillmeyer, MD, MSC
Delays in diagnosing and treating pulmonary hypertension (PH) can have life-altering consequences. In this episode, Dr. Kari Gillmeyer, discusses her groundbreaking study on PH care networks. She explores why so many patients experience delays, how geography and provider access play a role, and what can be done to improve timeliness of care.
A 200 Mile Journey from LA to San Diego to Raise Awareness for PH
I’m Aware That I’m Rare: the phaware® podcast
Episode 536 - Eric Borstein
When Eric Borstein collapsed in his bedroom in 2020, doctors gave him just months to live. Instead, he fought back with walking, mental health, and the support of his community. Now, he’s leading a movement, raising hundreds of thousands for pulmonary hypertension research, and walking 200 miles down the California coast to prove hope has no limits.
The Importance of Having a Specialized Center for PH
I’m Aware That I’m Rare: the phaware® podcast
Episode 535 - Akshay Muralidhar, MD
In this episode, Dr. Akshay Muralidhar, Co-Director of the Pulmonary Hypertension Center of Excellence at Arizona Pulmonary Specialist in Phoenix, discusses the importance of having a specialized center for pulmonary hypertension. Dr. Muralidhar also highlights the challenges of managing patients with substance abuse issues, particularly methamphetamine use. Dr. Muralidhar emphasizes the importance of access to care, particularly for underserved communities, and the need for outreach programs to ensure that all patients have access to treatment options.