She Checked the Organ Donor Box at 16, Now She’s Waiting for Someone Else’s Lungs
I’m Aware That I’m Rare: the phaware® podcast
Episode 594 - Kirsty McGeown
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 one day becoming a grandmother.
A Mom of Three, a Hidden Killer, and the Specialist Who Saved Her
I’m Aware That I’m Rare: the phaware® podcast
Episode 592 - Wendy Mercado
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 moment didn’t just change her treatment plan, it changed her future.
23 Years of Survival and Still Fighting the Darkness No One Sees.
I’m Aware That I’m Rare: the phaware® podcast
Episode 591 - Jenn Lalonde
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, your mind doesn’t always follow.
“Get Your Affairs in Order”: She Told Her Doctor She’d Be Back in 20 Years
I’m Aware That I’m Rare: the phaware® podcast
Episode 590 - Lynn Bouseman
In 1994, before there were any FDA approved therapies for pulmonary hypertension, Lynn Bouseman was told to prepare for the end. Her pressures were sky-high. Her heart was failing. A specialist suggested she might only have months to live. Lynn looked him in the eye and said, “No,” she had two small daughters waiting at home. Survival would require one thing above all else: a refusal to surrender.
She Didn’t Just Survive Being Rare. She Made Meaning Out of It.
I’m Aware That I’m Rare: the phaware® podcast
Episode 588 - Donna Wallace Harmon
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.
Out of Breath, Not Out of Dreams: One Woman’s PH Journey Across 79 Countries
I’m Aware That I’m Rare: the phaware® podcast
Episode 587 - Carolyn Mathur
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.
Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger.
I'm Aware That I'm Rare: the phaware® podcast
Episode 586 - Sherri Odusanya
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 had family across the ocean, it felt like her world was closing in.
Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment
I’m Aware That I’m Rare: the phaware® podcast
Episode 585 - Kathy Ilano
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 unfolds alongside IV pumps, emergency drives, and an unwavering partnership.
She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient
I’m Aware That I’m Rare: the phaware® podcast
Episode 584 - Christine Ryan
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.
The Dream She Lost at 18 and the Child Who Gave It Back
I’m Aware That I’m Rare: the phaware® podcast
Episode 583 - Amanda Chickie
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.
A New Mother’s Greatest Fear: “Am I Going to See My Daughter Grow Up?”
I’m Aware That I’m Rare: the phaware® podcast
Episode 582 - Lisa Harder
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.
From Wedding Bells to a Life-Altering Diagnosis
I’m Aware That I’m Rare: the phaware® podcast
Episode 581 - Cathleen Harrington
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.
Three Generations. One Gene. A Rare Disease She Couldn’t Outrun.
I’m Aware That I’m Rare: the phaware® podcast
Episode 578 - Dawn Ogden
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 her children’s futures.
She Went Looking for Answers and Ended Up Building a Support Group
I’m Aware That I’m Rare: the phaware® podcast
Episode 577 - Carla Kinsey
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.
PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others
I’m Aware That I’m Rare: the phaware® podcast
Episode 576 - Karen Sawyer
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.
A Silent Blood Clot, a 10-Hour Surgery, and a Second Chance at Life
I’m Aware That I’m Rare: the phaware® podcast
Episode 575 - Carol Stokely
Canadian CTEPH patient, Carol Stokely 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.
Why “The Walking Guy” Trusts His Therapist as Much as His Cardiologist
I’m Aware That I’m Rare: the phaware® podcast
Episode 573 - Eric Borstein
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 believes should be prescribed alongside life-saving therapies.
Don’t Let PH Ground You: A Real-World PH Travel Playbook
I’m Aware That I’m Rare: the phaware® podcast
Episode 572 - Nicole Dempsey
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.
She’d Never Been Sick - Until a Rare Disease Hit Like a Brick Wall
I’m Aware That I’m Rare: the phaware® podcast
Episode 570 - Terrie Keplinger
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 diagnosed before it’s too late.
From Newlywed to Newly Diagnosed
I’m Aware That I’m Rare: the phaware® podcast
Episode 569 - Rey Adam Rodriguez
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.