I'm Aware That I'm Rare: the phaware® podcast

She Checked the Organ Donor Box at 16, Now She's Waiting for Someone Else's Lungs Canadian pulmonary hypertension patient, Kirsty McGeown signed up to be an organ donor as a teenager, believing it was a simple act of kindness. Years later, Kirsty found herself sitting on the opposite side of that decision. Now, she's focused on reclaiming life's normal moments, holding onto hope, and dreaming of o...

The Impact of Exercise and Fitness on Improving Patient Outcomes Pulmonary hypertension patients are often handed powerful medications, but rarely something just as transformative: movement. Dr. Lana Melendres-Groves reveals a shocking truth that fewer than half of PH patients are ever referred to pulmonary rehab, even though research proves it can dramatically improve strength, breathing, and qua...

A Mom of Three, a Hidden Killer, and the Specialist Who Saved Her Balancing life as a full-time teacher, wife, and mother of three, PAH patient, Wendy Mercado, put herself last until her body forced her to stop. After years of bouncing between doctors and medications, a PH specialist finally sat down, drew her heart on paper, and said the words Wendy needed to hear: We're in this together. That mo...

23 Years of Survival and Still Fighting the Darkness No One Sees Surviving a rare disease isn't always heroic. Sometimes it's depression, isolation, and wondering if you're even "sick enough" to deserve the label anymore. Canadian pulmonary hypertension patient, Jenn Lalonde, battles imposter syndrome on her good days and crushing heaviness on the bad ones. Because even when your body stabilizes,...

"Get Your Affairs in Order": She Told Her Doctor She'd Be Back in 20 Years In 1994, before there were any FDA approved treatments for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist calmly suggested she might only have months. Lynn looked him in the eye and said, "No," she had two small daughters waiting at hom...

PH Didn't Just Change One Life, It Changed an Entire Family When pulmonary hypertension changed their father, Eric Borstein's life, sisters Abby and Ari refused to let the disease write the ending. Instead, their family turned heartbreak into hope by creating a community " Where is EB?" 5K dedicated to raising awareness, honoring their dad, and supporting others facing the same rare disease. What...

She Didn't Just Survive Being Rare. She Made Meaning Out of It. PH patient, Donna Wallace Harmon can't fly. She lives with limits. She knows tomorrow isn't guaranteed. But Donna refuses to live waiting for "someday." Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds. Learn more about pulmonary hypertension trials at www.phaware.global/clinicalt...

Out of Breath, Not Out of Dreams: One Woman's PH Journey Across 79 Countries Carolyn Mathur was told she had only hours to live. Then days. Then months. Instead of waiting to die, she chose to live—loudly, joyfully, and without apology. Nearly three decades later, she's still here, traveling the world, and proving that hope can outlive even the bleakest diagnosis. Learn more about pulmonary hypert...

Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger. Being prescribed oxygen broke PAH patient, Sherri Odusanya, in a way her diagnosis hadn't. Sleeping beside a roaring machine. Dragging tanks through daily life. Crying in the car after picking up her daughter from school. Then came the real gut punch… doctors warning she might never fly again. For a woman who loved travel and ha...

Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment Pulmonary hypertension patient, Kathy Ilano believed she'd never marry. Until she met her husband at her high school reunion. Still recovering from heart failure, carrying grief, fear, and a sodium-restricted diet, Kathy disclosed her illness on their very first date, convinced he wouldn't stay. He did. Their love story un...

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 li...

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...

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 www.phaware.global/clinicaltrials ....

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...

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 pati...

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. Learn more about pulmonary hypertension trials at  www.phaware.global/clinicaltr...

Three Generations. One Gene. A Rare Disease She Couldn't Outrun. Dawn Ogden has lived her entire adult life under the shadow of pulmonary hypertension. After losing her sister and watching her father battle the disease, Dawn learned it was genetic—and that she carried it. What followed was a lifetime of testing, fear, and impossible choices as she faced the reality that the same gene could shape h...

She Went Looking for Answers and Ended Up Building a Lifeline Before Zoom, before Facebook groups, pulmonary hypertension patient, Carla Kinsey, had only a voice on a phone line. That loneliness pushed her to do something terrifying: start a support group herself. What began as a need for connection became a lifeline for countless patients navigating rare disease. Learn more about pulmonary hypert...

PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others Pulmonary hypertension nearly stole Karen Sawyer's sense of self. Instead, Karen rebuilt it through advocacy, education, and human connection, proving that no one should face a rare disease alone. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Follow us on social @phaware Engage for a c...

A Silent Blood Clot, a 10-Hour Surgery, and a Second Chance at Life Canadian CTEPH patient, Carol Stokley was healthy, active, and unstoppable, until the day she couldn't breathe. After months of being told nothing was wrong, she collapsed into ICU with life-threatening clots in her lungs. Hear how a once-in-a-lifetime surgery gave her breath, strength, and life back. Learn more about pulmonary hy...

From "Untreatable" to Life-Changing: The New Era of CTEPH Care What happens when patients are told everything looks "normal" but they still can't breathe? Dr. Jenny Yang explains how new testing and team-based care are solving one of pulmonary medicine's most overlooked mysteries and changing what's possible for CTEPH patients. This Special Edition episode is sponsored by  Liquidia . Learn more ab...

Why "The Walking Guy" Trusts His Therapist as Much as His Cardiologist For PAH patient, Eric Borstein, walking started as a way to survive medication side effects. Now, it has become a way to survive himself. Each step pulling "EB" further from an ICU bed and closer to an identity that isn't defined by illness. Mental health has reshaped his recovery, and has become one of the lifelines he believe...

Don't Let PH Ground You: A Real-World PH Travel Playbook For Nicole Dempsey, travel has always meant freedom. After being diagnosed with pulmonary hypertension, that freedom suddenly felt fragile. Nicole shares how she continues to explore the world, raise her family, and find freedom beyond fear, proving that even with a rare disease, life doesn't have to stop. Learn more about pulmonary hyperten...

He Sent 100 Emails to Save His Wife… Only 3 Doctors Answered From a devastating diagnosis to a lung transplant that changed everything, Florin Dumitrescu shares how mindset, persistence, and community carried his family through their darkest moment and how survival transformed into advocacy for pulmonary hypertension patients across Europe. #WorldPHDay2026 Learn more about pulmonary hypertension t...

She'd Never Been Sick - Until a Rare Disease Hit Like a Brick Wall Terri Keplinger went from healthy and unstoppable to fighting for breath after unexplained swelling and a shocking ER visit led to a pulmonary arterial hypertension diagnosis. In this episode, she shares how denial turned into purpose, and how she transformed her fight into advocacy, support, and a mission to help others get diagno...