The Right Heart2023-09-26T11:21:30-04:00

Share Your Story With our Right Heart Blog

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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Piper With PH Marches Onward

April 21st, 2025|Categories: Featured, News, The Right Heart|

Carole Doody, a volunteer the PHA Patient and Caregiver Support Line, shares her story in honor of National Volunteer Week, which wraps up April 26. Doody and her husband Tom, who have been married for 55 years, have three children and four grandchildren. She is a retired speech-language pathologist.

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Volunteer Takes on International Care Disparities

April 21st, 2025|Categories: Featured, News, The Right Heart|

As the moderator of a PHA Facebook group, Janessa Curnow, 38, receives requests to join the group from people all over the world. For World Pulmonary Hypertension Day on May 5, Curnow shares what she’s learned from the international PH community. Curnow leads the PHA Young Adult Support Group and previously led the PHA Grand Rapids Support Group in Michigan.

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Transplant Recipient Aids Research Through Own Gift

April 7th, 2025|Categories: The Right Heart|

Lauri Stanfield of Tomball, Texas, received the gift of life in 2015 through a double lung transplant – and gave life by donating parts of her lungs for research. Stanfield, who works in the oil industry, likes to try new things and is weighing whether to learn pickle ball.

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San Antonio Support Group Leader Finds Community Through PHA

March 24th, 2025|Categories: The Right Heart|

Over the past 24 years, Sophia Esteves of San Antonio has found strength and community through the Pulmonary Hypertension Association. Last year, PHA named Esteves its 2024 Outstanding Support Group Leader. Esteves shares her story as the face of PHA’s spring fundraising campaign and in the upcoming issue of Pathlight magazine.

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Hobbies Help College Student Develop Leadership, Life Skills

February 24th, 2025|Categories: The Right Heart|

Jaylin Binkley, a first-year student at Indiana University-South Bend, is majoring in radiography and exercise science. The 19-year-old is on her college cheer team, participates in pageants and competes in 4-H, a youth program to learn about science, agriculture and civic engagement. She developed PH as a baby and relies on subcutaneous treprostinil.

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Inspired by Granddaughter, College Instructor Makes Up for Treatment Delay

January 14th, 2025|Categories: The Right Heart|

Four years ago, Teresa Bailey underwent an echocardiogram for a chronic cough. During the procedure, the sonographer asked who was treating Bailey’s PH. Bailey had never heard of pulmonary hypertension, nor knew that doctors suspected it during a previous thyroidectomy. Since then, Bailey has received a definitive diagnosis and is improving with treatment and pulmonary rehab. She shares how she’s making up for lost time in PHA’s Right Heart Blog.

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Patient Stories Inspire Marketer To Fundraise PHearlessly

December 31st, 2024|Categories: The Right Heart|

Casey Perez was diagnosed with pulmonary arterial hypertension three months after her wedding in 2018. The 32-year-old lives in Bradenton, Florida, with her husband and works as a marketer. “I turned to PHA’s invaluable resources on how to live better with PH,” she wrote in PHA’s most recent annual report.

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‘Advocating Keeps My Passion for Nursing Alive’

December 4th, 2024|Categories: The Right Heart|

Health care professionals struggle every day to ensure patients get the right drugs. They know what’s working and what’s not. Yet insurance companies decide whether patients receive their prescribed medications. “We need a better way to ensure our patients get what they need when they need it,” says Donnielle Turner, a registered nurse at Houston Methodist.

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Hiker Surmounts PH Through Backpacking Treks

November 20th, 2024|Categories: The Right Heart|

For Pulmonary Hypertension Awareness Month, Zachary Schmidt shares how he lets his light shine through hiking around the world. Schmidt, diagnosed with pulmonary arterial hypertension when he was in middle school, says he feels grateful for what his body can do and blessed for the ability to keep hiking, one step at a time.

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Volunteer Conquers Shyness Through Support Group

November 20th, 2024|Categories: Featured, News, The Right Heart|

Colleen Schnell, Niagara Falls, New York, has had pulmonary arterial hypertension related to heart defect, since she was a baby. But her family didn’t really know anything about PAH until the symptoms significantly worsened when Schnell was 24. Since then, she has appropriate treatment, discovered the Pulmonary Hypertension Association and leads a support group.

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Life Seems Miraculous After PTE Surgery

November 6th, 2024|Categories: Featured, News, The Right Heart, Top10PHAnews2024|

Terese Tuohey has lived with CTEPH for about 10 years but was diagnosed only five years ago. After PTE surgery in 2020, she has 85% of her lung capacity back. Tuohey shares her story for CTEPH Awareness Day on Nov. 13 and PH Awareness Month in November.

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Volunteer Spotlight: RN Inspired by Patients and Leading Support Group

October 23rd, 2024|Categories: Featured, News, The Right Heart|

Lisa Laughlin’s cardiac experience in the ICU paid off when she applied for a position to care for people with PH and other lung conditions, even though she knew little about PH. Since then, she’s learned a lot about PH on the job and through her patients. Read her story.

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Passion for Lung Physiology Leads to Research Grant

October 23rd, 2024|Categories: Featured, News, The Right Heart, Uncategorized|

With a family history of asthma, Roopa Siddaiah learned the challenges of lung diseases early on. Those experiences prompted her to study lung physiology and led to a Pulmonary Hypertension Association research grant. Siddaiah originally shared her story for PHA’s annual report. She shares it with PHA’s Right Heart Blog to encourage other researchers to apply for PHA grants. Read her story.

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Living PHearlessly With Soul Mate by Side

October 9th, 2024|Categories: Featured, News, The Right Heart, Top10PHAnews2024|

Gary Bruce co-leads the Pulmonary Hypertension Association Dallas Support Group with his wife Debra Hines-Bruce, whom he met at a PHA conference. He shared his story in the 2023 PHA Annual Report. Read his story in PHA’s Right Heart Blog.

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How Advocacy Helps Patients and Families

October 9th, 2024|Categories: Featured, News, The Right Heart|

Marina Salazar, a licensed clinical social worker at the University of California-San Francisco Medical Center, is active in PH advocacy. She originally shared her story with Pathlight, the Pulmonary Hypertension Association’s quarterly member magazine. Read her story.

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PH Clinic Work Inspires Exercise Specialist to Volunteer

September 24th, 2024|Categories: Featured, News, The Right Heart|

Andrea Redstone-Henry, an exercise specialist at Community Heart and Vascular Hospital in Indianapolis, began helping in the PH clinic this year. Her interest in PH grew, and now she’s a Pulmonary Hypertension Association Volunteer. Read her story in PHA’s Right Heart Blog.

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Find Your Tribe To Share Victories and Tough Days

August 15th, 2024|Categories: Featured, Healthcare Professionals, News, The Right Heart|

LaKeshia Orr was just shy of her 31st birthday when she learned she had pulmonary hypertension. After her pulmonologist introduced her to a Pulmonary Hypertension Association support group, her outlook changed. Today, Orr, 38, is the face of our fall fundraising campaign.

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To support others, Jamie Mykins healed herself

June 3rd, 2024|Categories: Featured, News, The Right Heart, Top10PHAnews2024|

Jamie Mykins, 44, uses her professional skills to as a mental health counselor to help others – and herself. Diagnosed with pulmonary hypertension in 2014, she learned to advocate for herself, accept her situation and embrace her passions. Mykins, of Orlando, Florida, shares her story with the Pulmonary Hypertension Association’s Right Heart Blog.

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Fashion Designer Crusades for PH Awareness In Nigeria

May 20th, 2024|Categories: Featured, News, The Right Heart, Uncategorized|

Ayotunde Omitogun faced a lack of resources, medication and knowledge about PH when she was diagnosed 10 years ago. “Everybody here knows about malaria or about cancer, but PH is an invisible disease,” says the 36-year-old founder of Yo Sabi PH. Omitogun shares her journey in PHA News and Pathlight for World PH Day.

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Social Worker Celebrates Post-Transplant Life

April 23rd, 2024|Categories: Featured, News, The Right Heart|

Social worker and PHA volunteer Patrick Mellin of received a double lung transplant in 2023. He shares his emotional and physical roller coaster with PHA for National Donate Life Month. “Transplant is not a cure, it’s another chance at life,” he says. Read his Right Heart blog post.

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Michigan Family Shares Daughter’s PH Journey

March 13th, 2024|Categories: Featured, News, The Right Heart|

Cheryl Wegener felt grateful when her daughter’s former classmates chose PHA as a recipient of their senior class fundraiser. She thought the donation was a fitting tribute to Madison, who died during her freshman year of high school. Cheryl shares Madison’s story for PHA's spring fundraising campaign. She and her husband will present the check from the fundraiser at PHA 2022 International PH Conference and Scientific Sessions, Aug. 15-18 in Indianapolis.

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Game, Set, Match: Tennis Buff ‘Smashes’ PH

February 23rd, 2024|Categories: The Right Heart, Top10PHAnews2024|

When Kathryn Buffington was diagnosed with PH, a doctor said she’d never play tennis again. Her response? “Watch me.” Buffington, 73, shares her exercise and medication regimens and positive thinking with the Pulmonary Hypertension Association’s Right Heart Blog.

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As Diagnosis Shock Wanes, Jessica Williams Learns Hope and Gratitude

January 11th, 2024|Categories: The Right Heart|

Jessica Williams felt like she lost everything she’d ever worked for when she was diagnosed with pulmonary hypertension in February 2020. Williams had to give up the cleaning company she started so to manage her disease. Williams, who lives with her parents in Omaha, shares her journey with the Pulmonary Hypertension Association’s Right Heart Blog.

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Shannon Munson soars beyond tough times

January 2nd, 2024|Categories: The Right Heart|

Shannon Munson of San Clemente, California, makes the most of living with pulmonary hypertension. Diagnosed in 2006, Munson lives an active lifestyle and volunteers at her children’s schools. “Over the last 17 years, I have continued to do all the things I was told I would never do again.”

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How Ron Ancrum Found Strength to ‘Keep On Moving’

November 7th, 2023|Categories: Featured, News, The Right Heart|

Ron Ancrum was 25 when he learned he had sarcoidosis. Three decades later, he learned the condition had caused pulmonary arterial hypertension. He shares his path to positivity and self-publishing in the Pulmonary Hypertension Association’s Right Heart Blog. Read his story.

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After 10 Years With PH, She’s Looking Toward Countless More

August 30th, 2023|Categories: The Right Heart, Top10PHAnews2023|

When Janessa Curnow was diagnosed with PH, she was inspired that her doctor had been treating some patients for 10 years. So she set a goal she didn’t know if she could keep. This summer, she met that goal: her 10th anniversary of living with PH.

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Queer Representation in the PH Community

June 16th, 2023|Categories: The Right Heart|

Sydney Ward is a business owner and part-time yoga instructor who lives outside of Minneapolis with their partner Tom and cats Luna and Pandora. She is bisexual and nonbinary, specifically gender queer. Sydney shared initially shared their story in the summer 2022 issue of Pathlight.

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Texas Third Graders Rally for Classmate With PH

May 10th, 2023|Categories: Featured, News, The Right Heart|

Hughes Elementary School showed its true colors for World PH Day when students and staff dressed in purple to support third-grader Isla Grey, who has PH. Isla’s class also raised $660 in quarters in April for pulmonary hypertension research. Isla’s mom Jennifer Morrow shares their story in the Right Heart Blog.

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Decreasing Lung Pressure Gives Hope a Year After Diagnosis

February 27th, 2023|Categories: The Right Heart|

Uraiwan Campbell went to urgent care for what she thought was an infected scratch on her leg. But after several days in the hospital and many tests, she learned her swollen leg was related to pulmonary hypertension. A recent heart catheterization showed her lung pressure has declined, buoying her spirits.

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Family, Friends, Hot Sauce Help Patient Stay Positive

January 30th, 2023|Categories: The Right Heart, Top10PHAnews2023|

Chloe Merritt is still getting used to a low-sodium diet, lack of energy and a subcutaneous pump after her September 2022 diagnosis. The life-changing experience brought her closer to family and friends and led her to a new favorite food. See the Right Heart Blog post.

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Familial PAH Affects 4 Generations

January 4th, 2023|Categories: The Right Heart|

Whitney Whited was 10 when her father died of pulmonary arterial hypertension (PAH) complications. Recently, she learned about the BMPR2 gene and sought genetic testing for her 11-year-old daughter. Whitney, 34, who doesn’t have PAH, shared her family’s story in the winter 2022 issue of Pathlight, the Pulmonary Hypertension Association’s member magazine.

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Retiree Stays Active as She Adapts to CTEPH

January 4th, 2023|Categories: The Right Heart|

Joyce Sandberg of Port St. Lucie, Florida, noticed shortness of breath nine years ago while biking. A few years later, she developed blood clots and chronic thromboembolic pulmonary hypertension. But she doesn’t let her conditions stop her from enjoying life, taking cruises and attending classic car shows with her husband.

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CTEPH Patient Finds Community Through PHA Facebook Group

December 5th, 2022|Categories: The Right Heart|

Karly Loree, 30, felt isolated after her chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis. But when she discovered a Pulmonary Hypertension Association support group for people with CTEPH, she found support, hope and community. As she awaits surgery this month, she shares her story for the Pulmonary Hypertension Association’s end-of-year fundraising campaign.

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How a New Jersey Support Group Leader Honors Her Late Son

November 9th, 2022|Categories: The Right Heart|

Bonnie Patricelli memorializes her son Ryan Juntti through her volunteer work for the Pulmonary Hypertension Association (PHA). She and Ryan revived PHA’s South Jersey Support Group in 2008, and she continues to co-lead the group since Ryan’s 2015 death. Bonnie’s story appears in the fall issue of Pathlight, PHA’s quarterly member magazine.

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Join the Liu Family in Supporting PHA

November 9th, 2022|Categories: The Right Heart|

The Liu family was vacationing in the Netherlands in 2012 when their 2-year-old daughter, Esther, had a heart attack. Two days later, she was diagnosed with pulmonary arterial hypertension, with an unknown cause. Since then, she has received a double lung transplant and travels all over the world with her mother Michelle, a physician and Pulmonary Hypertension Association (PHA) board member, to share their PH journey. Dr. Liu, shares that story as part of PHA’s fall fundraising campaign.

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Former Teacher Finds Meaning as Support Group Leader

September 28th, 2022|Categories: The Right Heart|

Becoming a support group leader has added meaning to Les Freeman’s life. The former teacher says being a support group leader is much like preparing lessons: He tries to blend education along with socialization. Les, who leads the Central Oregon PHA Support Group with his wife Michele, shares his story with the Pulmonary Hypertension Association’s Right Heart Blog.

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Patient’s Positive Attitude Inspires Nurse to Start Support Group

August 31st, 2022|Categories: The Right Heart|

Debbie Kittel recently started a Pulmonary Hypertension Association support group at The Ohio State University, where she is the PAH nursing program manager. “I am proud of how big the group has grown and how quickly it has taken off.”

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Taking Life a Day at a Time a Year After Diagnosis

August 2nd, 2022|Categories: The Right Heart|

Debra Gonzales, 66, is a just a year into her pulmonary hypertension journey. After a recent doctor visit, she learned her arterial pressure had declined and her heart function had improved. Her pulmonary arterial hypertension doesn’t stop her from spending time with her daughter, mother-in-law, friends and her dog in Redondo Beach, California.

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Son’s PH Helps Pediatrician Better Understand Her Patients

July 5th, 2022|Categories: The Right Heart|

As an intensive care pediatrician, Chandani Dezure, M.D., treats critically ill children. After one son was diagnosed with pulmonary hypertension, Dr. Dezure became a caregiver herself. She shares how her son's PH helped her become a better doctor. Her story appeared in the June 2022 issue of Pathlight.

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Hole in Heart Leads to PH Diagnosis

May 24th, 2022|Categories: The Right Heart|

Doctors weren’t sure Lillian Cooke would survive the night they discovered her pulmonary arterial hypertension. Three years later, the stay-at-home mom spends time with family and friends, painting, playing video games and listening to music.” I hope my story gives someone else hope,” Lillian writes in the Pulmonary Hypertension Association’s Right Heart Blog. “I will never lose hope, and I’m going to keep fighting until my last breath.”

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Dancing Through Life with PH

May 10th, 2022|Categories: The Right Heart|

Pam Vinesett of North Carolina served three years of active duty and 17 years in the army reserves. The mother of seven and grandmother of eight enjoys swimming, fishing and tubing with her husband. In 2014, she noticed shortness of breath and other pulmonary hypertension symptoms. Since her eventual diagnosis and other health challenges, she is doing well and teaches four to six Zumba classes a week.

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PAH Trial Participants Inspire Doctor’s Passion for PH Research

April 26th, 2022|Categories: The Right Heart|

Nadine Al-Naamani, M.D., was inspired to become a doctor after growing up in Beirut during the civil war in Lebanon. She knew then that she wanted to help people around her. Today, she treats people with pulmonary hypertension (PH) and other serious lung conditions at Penn Medicine and conducts PH research. She is an assistant professor of medicine at University of Pennsylvania Hospital, a Pulmonary Hypertension Association-accredited PH Care Center. She originally shared her story with Pathlight, PHA’s quarterly member magazine.

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Health Care Exec Breathes Easily After PTE Surgery

March 2nd, 2022|Categories: The Right Heart|

Angela Donovan began experiencing shortness of breath in 2019. After she moved for a new career, her symptoms worsened. A work visit to an urgent care clinic led to her chronic thromboembolic pulmonary hypertension diagnosis. She shares her story for Blood Clot Awareness Month.

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Focusing on the Small Things to Breathe Easier

October 14th, 2021|Categories: Featured, News, The Right Heart|

Moving to Oregon after her pulmonary hypertension (PH) diagnosis helped Donna Kay Hutchinson refocus on simple things in life: watching the ocean, taking drives in the neighborhood, volunteering at an art gallery. As she made relaxation a priority, her chronic pain and PH seemed to improve. Her doctors noticed too.

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Finding Hope in the PH Community and Research Studies

September 2nd, 2021|Categories: The Right Heart|

Morgan Nuchols began to show signs of PH as a baby. Today the 28-year-old participates in the Pulmonary Hypertension Association’s Generation Hope Facebook Support Group for young adults. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia.

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PAH Diagnosis Leads to New Outlook on Life

August 19th, 2021|Categories: The Right Heart|

A month after her diagnosis, Wendy McBride was sitting in her living room attached to a central line. Despite a five-year prognosis, she chose to live rather than die. Her life changed for the better as she learned to cope through diet, exercise and a quit-feeling-sorry-for-yourself attitude. She discovered a strength she never knew she had.

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Former Teacher Educates Professionals About the Patient Experience

July 8th, 2021|Categories: The Right Heart|

After a 42-year education career, Missy Storm volunteers for the Pulmonary Hypertension Association and the hospital where she underwent a pulmonary thromboendarterectomy in 2018. She started by sharing her experiences with medical staff fulfilling their continuing education requirements.

Familial PAH Diagnosis Prompts Need to Give Back

June 10th, 2021|Categories: The Right Heart|

Kayla Naecker had classic signs of pulmonary hypertension (PH), a disease that killed her biological grandmother. But Kayla, of Benld, Illinois, didn’t suspect PH. She was in her 20s, and her grandmother’s case was thought to be associated with diet pill use. Genetic testing after a right heart catheterization confirmed familial PAH, so Kayla had her 3-year-old daughter tested, too. Kayla shares her story with the Pulmonary Hypertension Association’s Right Heart Blog for American Family Month.

Thankful for Treatment Advancements That Give Hope

May 27th, 2021|Categories: The Right Heart|

Pulmonary hypertension (PH) was no stranger to Albert Wright when she was diagnosed in 2018. Her oldest sister and a niece died from it. But Alberta lives life to the fullest, taking nothing for granted. She leads the Pulmonary Hypertension Association’s Detroit Support Group and administers a PHA Facebook support group page. A full-time teacher’s aide, she shares her PH journey with PHA’s Right Heart Blog for National Family Month in June.

Help Change the Lives of People With PH

April 29th, 2021|Categories: The Right Heart|

Monica Penaranda thought her life was shattered when a pulmonary hypertension (PH) diagnosis ended her days of cheerleading, track and varsity softball. Instead, she reconfigured her life goals. Twenty-three years later, Monica, a member of the Pulmonary Hypertension Association (PHA) Board of Trustees, is the face of PHA’s spring fundraising campaign.

Support Group Leader Stays Strong Through Faith and Family

April 15th, 2021|Categories: 30 Years of PHA, Support Groups, The Right Heart|

Gwendolyn Brown has lived with pulmonary arterial hypertension (PAH) for more than 40 years. She has survived a heart attack, three strokes and 11 mini strokes. She leads the Pulmonary Hypertension Association (PHA)’s Cleveland Community Support Group and is a minister at Zion Pentecostal Church of Christ.

Living in the Moment With New Lungs

April 15th, 2021|Categories: The Right Heart|

A month before Genevieve Hughes turned 50, severe shortness of breath forced her to seek emergency treatment. “I thought I was just getting older and out of shape,” says Genevieve, who later learned she had idiopathic pulmonary arterial hypertension and eventually would need a double-lung transplant. Now two years post-transplant, she’s breathing deeply and enjoying her gift of life.

PH Changed Her Life. It Taught Her to Persevere

April 1st, 2021|Categories: 30 Years of PHA, The Right Heart|

Diane Ramirez of Lexington, North Carolina, was diagnosed with pulmonary arterial hypertension in 1987. At the time, fewer than 200 cases were known of the disease then known as primary pulmonary hypertension (PH). Diane originally shared her PH journey in the December 2020 Pathlight magazine, which launched the Pulmonary Hypertension Association’s 30th anniversary celebration.

Emergency Prep: Surviving Poor Air Quality

October 1st, 2020|Categories: The Right Heart|

Evans Wilson and his wife Alicia were recently affected by the smoke from the wildfires that raged through the West Coast. Evans was diagnosed with pulmonary arterial hypertension (PAH), pulmonary fibrosis (PF) in October 2014 and chronic thromboembolic pulmonary hypertension (CTEPH) in December 2016. This is his story.

Born with Collapsed Lung, 36-Year-old Awaits Double Lung Transplant

July 2nd, 2020|Categories: 30 Years of PHA, The Right Heart|

I was told I would never see my childhood years, but I defeated that. Over time, I developed the nickname “Bones.” When my weight hit 100 pounds, my family celebrated. I was told that I would never see my teenage years, but I defeated that, too. I was told I would never get to see my adulthood. I’m now 36.

Meet Samuel Hall: Inventor, PH Patient and Sarcoidosis ‘Warrior’

April 9th, 2020|Categories: The Right Heart|

Samuel Hall’s pulmonary hypertension (PH) developed nearly a decade after he was diagnosed with sarcoidosis. The inflammatory disease can affect many organs but often causes lung issues and shortness of breath on exertion. Samuel, the inventor of the O2 Safety Strap, considers himself a sarcoidosis warrior. The Springfield, Missouri, resident talks to the Pulmonary Hypertension Association (PHA) to mark Sarcoidosis Awareness Month.

Aubrey Stout: 10 Years Since Diagnosis and Life Is Getting Better

January 30th, 2020|Categories: Archived, The Right Heart|

Aubrey Stout of Beggs, Oklahoma, has idiopathic pulmonary arterial hypertension. Since her 2010 diagnosis, she spreads PH awareness, advocates for herself and others, and raises money for the Pulmonary Hypertension Association. 'I fish, travel,

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Sydni Burgess (caregiver)

November 26th, 2019|Categories: 30 Years of PHA, Archived, The Right Heart|

My mother fought PH for six years, and it wasn't until I got older that I realized what PH patients truly go through and how much I admire the strength they show every day. My mom is the strongest woman I know. She didn’t look at PH as a downfall, and she never talked negative about what was happening to her body. She faced it head on with a smile on her face, and she knew that she had a family to fight for.

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

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

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 hypertension (PH), Donna is an active participant

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 Activities, 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

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 Activities, 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 pediatrician

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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|

Darby Hetrick has lived with pulmonary hypertension since she was two years old, but that hasn't stopped her. She traveled through Europe, played tennis and is now halfway through her college career. 'I see my

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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|

'After diagnosed with PH, I felt many mixed emotions. But, as unbelievable as it can sound, my main emotion was that of HAPPINESS.' By Jesus CornejoLast weekend it was the Homecoming Dance in

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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 Activities, 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|

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- and seven-year-old on my

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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|

'Denying coverage for pre-existing conditions, or any medical need, robs families like mine of a future together.' By Sharon ThomasI had health care coverage when I found out I needed a life-saving heart and

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