The Right Heart2020-07-31T11:45:46-04:00

We have The Right Heart to share…

Living with a serious and rare diagnosis like pulmonary hypertension (PH) can be isolating. The PHA community is a network where people can connect with others who aren’t just living with PH, they’re living their best lives. People with PH are more than their illness, with hopes, goals and experiences that are rich and inspiring. Friends, family, caregivers, care providers and other supporters who have been inspired to add their voices to the fight against PH are part of this network, too. Together, the PHA community has the right heart for adventure, altruism, community and caring.

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Colleen Brunetti: Reflections on the Power of Telling Your Story

November 29th, 2018|Categories: Advocacy, Archived, Awareness, Community, Featured, Living with PH, News, The Right Heart|

My name is Colleen Brunetti, and I am your Pulmonary Hypertension Association (PHA) Board of Trustees chair-elect. I’m the first patient to serve in this volunteer position in many years, and the enormity of

Rebekah Calverley Lives an Amazing, Beautiful, Fearless Life with Pulmonary Hypertension

April 26th, 2018|Categories: Archived, Community, Events, Families and Caregivers, Featured, Fundraising, Living with PH, News, Support Groups, The Right Heart|

Born in Auckland, New Zealand, Rebekah was sick a lot as a toddler with colds and even pneumonia.  That didn’t stop her from being active like any other child as her parents searched for

Early Diagnosis and Advanced Care Put Indianapolis Mom with Pulmonary Hypertension on Promising Path

April 10th, 2018|Categories: Archived, Awareness, Community, Diagnosis and Treatment, Events, Families and Caregivers, Featured, Fundraising, Healthcare Professionals, Living with PH, News, Press Release, Support Groups, The Right Heart|

Indianapolis, Ind. (April 10, 2018) -- Donna Sparks combats a progressive life-threatening lung disease with courage, conviction and compassion -- for herself and others who share her fight. Diagnosed three years ago with pulmonary

St. Louis Survivor of Deadly Lung Disease Working Hard, Inspiring Others and Breathing Easily

March 21st, 2018|Categories: Archived, Awareness, Community, Diagnosis and Treatment, Events, Families and Caregivers, Featured, Fundraising, Healthcare Professionals, Living with PH, News, Press Release, Support Groups, The Right Heart|

St. Louis, MO (March 20, 2018) -- Amanda Harvey-McKee’s life is the epitome of the notion that if you want to get something done, give it to a busy person. At age 39, she

Washington, D.C. Golden Glove Lightweight Champion Elvis Medrano Faces Biggest Battle with Deadly Lung Disease Diagnosis

March 13th, 2018|Categories: Archived, Awareness, Community, Diagnosis and Treatment, Families and Caregivers, Featured, Living with PH, News, Press Release, Support Groups, The Right Heart|

Silver Spring, Md. (March 13, 2018) -- In and out of the boxing ring, Washington, D.C., Golden Glove lightweight champion Elvis Medrano is in a daily battle for his life. At 27, he’s lived six

PHA Support Group Leader Stephanie Bachelder Wears Many Hats in Meeting With Congressman

March 7th, 2018|Categories: Advocacy, Archived, Awareness, Community, Diagnosis and Treatment, Families and Caregivers, Featured, Healthcare and Insurance, Healthcare Professionals, Living with PH, News, Support Groups, The Right Heart|

PHA support group leader volunteers take on many roles in the pulmonary hypertension (PH) community. Many are living with PH -- others are caregivers or health care professionals -- in addition to being constituents,

How the Unknown Led to Certainty for PhD Student and PH Patient Raele Robison

March 1st, 2018|Categories: Archived, Awareness, Community, Families and Caregivers, Featured, Living with PH, News, The Right Heart|

Raele Robison was a student in a demanding PhD program when she was diagnosed with scleroderma and pulmonary hypertension. Now armed with answers about what was causing her mysterious symptoms, she is living her best

The Barefoot Movement: PHighting for a Cure for Jackson

January 11th, 2018|Categories: Archived, Awareness, Community, Families and Caregivers, Featured, Fundraising, Living with PH, News, Support Groups, The Right Heart|

Noah Wall is a singer, songwriter, and fiddler in the award winning acoustic band “The Barefoot Movement.”  Her nephew Jackson Wall was diagnosed with pulmonary hypertension (PH) at one year old. Jackson’s parents hold a

Living and Breathing through PH – and Hurricane Maria

December 21st, 2017|Categories: Community, Families and Caregivers, Featured, Living with PH, News, The Right Heart|

by Luis Cortes I was born in 1976 and raised on the beautiful island of Puerto Rico with a congenital heart defect called, Tetralogy of Fallot. Since no open heart surgeries were done on

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The Right Heart Video Series: Kerry Babylon

December 14th, 2017|Categories: Community, Families and Caregivers, Featured, Living with PH, News, Support Groups, The Right Heart|

Kerry Babylon is living her best life with PH. In this video post from PHA's The Right Heart blog series, she talks about traveling with PH and the importance of family. Kerry recently starred in a

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Jaxon’s Story: The Highlight of Our Day Every Day

December 2nd, 2017|Categories: Archived, Community, Families and Caregivers, Featured, Living with PH, News, Support Groups, The Right Heart|

Temi and Lance Jones welcomed a beautiful baby boy named Jaxon into their lives in July of 2016.  He was healthy, and they never had any cause for concern until the

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Darby Hetrick: “I Don’t Let PH Hold Me Back”

November 30th, 2017|Categories: Archived, Community, Families and Caregivers, Featured, Living with PH, News, The Right Heart|

By Darby Hetrick I am 20 years old and I have Pulmonary Hypertension. I have had PH since I was two years old. Yes, there were some hard times, but I never let it

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My Return to Gardening After CTEPH

November 30th, 2017|Categories: Archived, Awareness, Community, Diagnosis and Treatment, Families and Caregivers, Featured, Living with PH, News, Support Groups, The Right Heart|

Chronic thromboembolic pulmonary hypertension (CTEPH) is a form of pulmonary hypertension (PH) associated with pulmonary embolism (PE), a life-threatening blood clot that usually forms in a vein deep in the legs and travels to the

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Shavini’s Story: “I Don’t Worry About What I Have No Control Of”

November 30th, 2017|Categories: Archived, Community, Families and Caregivers, Featured, Living with PH, News, The Right Heart|

Shavini Fernando, 35, talks about her pulmonary arterial hypertension (PAH) diagnosis two years ago and her journey to the United States from Sri Lanka in search of better care and treatments. Since being diagnosed,

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Support Group Leader Bill Kolms’ CTEPH Story

November 27th, 2017|Categories: Archived, Awareness, Community, Diagnosis and Treatment, Families and Caregivers, Featured, Living with PH, News, Support Groups, The Right Heart|

Bill Kolms was initially told that he was just getting older and needed to exercise more before he sought additional information about his symptoms. He ultimately determined that he had a type of pulmonary hypertension

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Passion to Profession: Following My Mother’s Faith and Tenacity

November 21st, 2017|Categories: Archived, Community, Families and Caregivers, Featured, Healthcare and Insurance, Healthcare Professionals, Living with PH, News, The Right Heart|

By Kimberly Mosley It was the summer of my senior year of high school. I remember the doctor coming into the room and diagnosing my mother with pulmonary hypertension (PH). It was something that

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The Right Heart Video Series: Dancing My Way Through Pulmonary Hypertension

November 8th, 2017|Categories: Archived, Awareness, Community, Diagnosis and Treatment, Families and Caregivers, Featured, Healthcare and Insurance, Living with PH, The Right Heart|

By Jesus Cornejo Last weekend it was the Homecoming Dance in my High School. My date dumped me, but nothing would ruin the occasion. I wore a suit, a nice shirt, and bowtie.

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My “Pre-Existing Condition” Started at Birth – How I Fight for Access to Care

November 8th, 2017|Categories: Advocacy, Archived, Awareness, Community, Families and Caregivers, Featured, The Right Heart|

By Bobby Hall About Bobby Hall: Bobby Hall is a social media influencer and activist who lends his voice to raising awareness for pulmonary hypertension. He also works for Project Angel Food, an organization

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The Right Heart Video Series: Darby’s Story

November 3rd, 2017|Categories: Archived, Awareness, Community, Families and Caregivers, Featured, Healthcare Professionals, Living with PH, News, The Right Heart|

Darby Hetrick was diagnosed with pulmonary hypertension (PH) when she was only 2 years old. She needed to be on a life-sustaining, I.V. infused medication 24/7, and eventually was able to move to

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Two Lives Turned Upside Down in Ohio

November 2nd, 2017|Categories: Advocacy, Archived, Awareness, Community, Families and Caregivers, Featured, Living with PH, The Right Heart|

By Amy Brady I have pulmonary arterial hypertension (PAH). Like many living with the disease, I take several medications. Thankfully, my doctor was able to keep my PAH controlled with oral medications. My daughter isn't

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More Than a Spectator: Living My “New Normal” With PH

October 12th, 2017|Categories: Archived, Awareness, Community, Families and Caregivers, Featured, Living with PH, News, The Right Heart|

By Tami Arnold Most people don’t realize I’m sick. It’s not something you could guess by looking at me. When I was diagnosed with PH in 2008, I really didn’t think it was that

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This Is Your Journey: Lessons in Transitioning from Pediatric to Adult PH Care

October 12th, 2017|Categories: Archived, Awareness, Community, Families and Caregivers, Featured, Living with PH, News, The Right Heart|

By Becca Atherton I was diagnosed at birth with complex congenital heart disease that caused me to develop pulmonary hypertension. Now 24 years old, I’m transitioning from pediatric PH care to an adult facility.

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Family Rallies Around Child Living With PH: Everybody Deserves the Dream of “When I Grow Up…”

October 4th, 2017|Categories: Archived, Awareness, Community, Events, Families and Caregivers, Featured, Fundraising, Living with PH, News, The Right Heart|

In Haylee's first year of life she was on the exact growth chart as her older sister, but was hit with several respiratory illnesses. As she grew older, some of her milestones were delayed

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Coming Full Circle: A Filmmaker’s Journey

September 28th, 2017|Categories: Archived, Awareness, Community, Families and Caregivers, Featured, Living with PH, News, Support Groups, The Right Heart|

By Robert Nyerges Although it seems like just yesterday, nearly ten years have gone by since the passing of my mother, Helena Strauch. Neither my mother or myself knew a lot about her rare

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Travel by Train: My 1,200 Mile PH Adventure

September 27th, 2017|Categories: Archived, Community, Families and Caregivers, Featured, Living with PH, News, Support Groups, The Right Heart|

By Barbara Holden People living with PH often have special travel considerations that require extra planning. The quickest route – flying – isn’t always an option. Sometimes the choice to not travel by airplane

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My Husband’s Unexplained Illness and PH Diagnosis

September 20th, 2017|Categories: Archived, Awareness, Community, Diagnosis and Treatment, Families and Caregivers, Featured, Living with PH, News, The Right Heart|

By Arianne Rohmann My active thirty-year-old husband was diagnosed with pulmonary hypertension (PH) and bi-lateral blood clots after experiencing unexplained symptoms for months… Five months later I was a 29-year-old widow raising a four-

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Inadequate Coverage Nearly Cost Me My Life

September 19th, 2017|Categories: Advocacy, Archived, Awareness, Community, Diagnosis and Treatment, Families and Caregivers, Featured, Living with PH, The Right Heart|

By Sharon Thomas I had health care coverage when I found out I needed a life-saving heart and lung transplant for a disease called pulmonary hypertension. However, my insurance denied the treatment I needed.

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Announcing “The Right Heart” – New PHA Blog Series of People Living Their Best Lives With PH

September 19th, 2017|Categories: Archived, Awareness, Community, Families and Caregivers, Featured, Healthcare Professionals, Living with PH, Support Groups, The Right Heart|

Living with a serious and rare diagnosis like pulmonary hypertension (PH) can be isolating. The PHA community is a network where people can connect with others who aren't just living with PH, they're living their

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