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
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.
Volunteer Takes on International Care Disparities
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.
Transplant Recipient Aids Research Through Own Gift
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.
San Antonio Support Group Leader Finds Community Through PHA
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.
Hobbies Help College Student Develop Leadership, Life Skills
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.
Inspired by Granddaughter, College Instructor Makes Up for Treatment Delay
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.
Patient Stories Inspire Marketer To Fundraise PHearlessly
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.
‘Advocating Keeps My Passion for Nursing Alive’
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.
Hiker Surmounts PH Through Backpacking Treks
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.
Volunteer Conquers Shyness Through Support Group
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.
Life Seems Miraculous After PTE Surgery
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.
Volunteer Spotlight: RN Inspired by Patients and Leading Support Group
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.
Passion for Lung Physiology Leads to Research Grant
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.
Living PHearlessly With Soul Mate by Side
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.
How Advocacy Helps Patients and Families
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.
PH Clinic Work Inspires Exercise Specialist to Volunteer
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.
Find Your Tribe To Share Victories and Tough Days
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.
To support others, Jamie Mykins healed herself
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.
Fashion Designer Crusades for PH Awareness In Nigeria
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.
Utah Support Group Provides Community and Healing
Lala Juarez of Salt Lake City, Utah, was diagnosed with pulmonary arterial hypertension in 2015 after two years of misdiagnosis. Jaurez, who leads the Northern Utah PHA Support Group, received a double lung transplant in 2021.
Social Worker Celebrates Post-Transplant Life
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.
Michigan Family Shares Daughter’s PH Journey
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.
Game, Set, Match: Tennis Buff ‘Smashes’ PH
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.
As Diagnosis Shock Wanes, Jessica Williams Learns Hope and Gratitude
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.
Shannon Munson soars beyond tough times
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.”
‘Legislation Should be Passed Today for Accessible Oxygen’
Cris Dingman was diagnosed with pulmonary arterial hypertension in December 2016, and was immediately put on oxygen.
The Case for Portable Liquid Oxygen
Transitioning to liquid oxygen was challenging. My oxygen needs increased requiring me to learn a new system. This change forced me to admit that my progressive disease was progressing.
Oxygen Users ‘Desperately Need More Options’
Nancy Zeppa, 60, is a leader of the Pulmonary Hypertension Association South Jersey Support Group. Her journey with oxygen began in August 2019 when she was diagnosed with pulmonary arterial hypertension.
How Ron Ancrum Found Strength to ‘Keep On Moving’
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.
After 10 Years With PH, She’s Looking Toward Countless More
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.
Queer Representation in the PH Community
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.
PHA and Pride: Volunteer Spreads Hope, Joy and Laughter
Singer/actor Stephen Carter-Hicks is long-time volunteer for the Pulmonary Hypertension Association. He initially shared this story in the summer 2022 issue of Pathlight, PHA’s quarterly member magazine.
Texas Third Graders Rally for Classmate With PH
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.
Decreasing Lung Pressure Gives Hope a Year After Diagnosis
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.
Family, Friends, Hot Sauce Help Patient Stay Positive
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.
Familial PAH Affects 4 Generations
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.
Retiree Stays Active as She Adapts to CTEPH
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.
CTEPH Patient Finds Community Through PHA Facebook Group
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.
How a New Jersey Support Group Leader Honors Her Late Son
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.
Join the Liu Family in Supporting PHA
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.
Former Teacher Finds Meaning as Support Group Leader
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.
Georgette Recognized a Rare Catch on the Volleyball Court. His Rare Diseases Spiked Later
Georgette Bridger and her husband of 27 years, Dean, live in Suffolk, Virginia. Together they have four children and a dog Annabell. Dean was diagnosed with scleroderma in 1997 and pulmonary arterial hypertension
Patient’s Positive Attitude Inspires Nurse to Start Support Group
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.”
Taking Life a Day at a Time a Year After Diagnosis
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.
Son’s PH Helps Pediatrician Better Understand Her Patients
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.
Hole in Heart Leads to PH Diagnosis
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.”
Dancing Through Life with PH
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.
PAH Trial Participants Inspire Doctor’s Passion for PH Research
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.
Seeing PH Diagnosis as a Blessing
Twelve years after her pulmonary hypertension diagnosis, Marcie McGregor credits her faith in God, her doctors and the Pulmonary Hypertension Association (PHA) for where she is today. Marcie shares her story for PHA’s spring fundraising campaign, which begins April 29.
Health Care Exec Breathes Easily After PTE Surgery
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.
Finding Hope and Inspiration Among Peers
Mesha Guilloty wasn’t diagnosed with pulmonary hypertension (PH) until a decade after her symptoms began. Mesha’s story originally appeared in the December 2021 issue of Pathlight, PHA’s member magazine.
Appreciating Each Day While Awaiting Transplants
PH changed the life of Jessica Calkins. Jessica, 37, of Yakima, Washington, awaits a double lung and heart transplant for her pulmonary arterial hypertension (PAH).
Focusing on the Small Things to Breathe Easier
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.
Finding Hope in the PH Community and Research Studies
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.
PAH Diagnosis Leads to New Outlook on Life
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.
Former Teacher Educates Professionals About the Patient Experience
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.
Spreading PH Awareness for 20-Plus Years
Elise Zwicky’s greatest fear at diagnosis was that she wouldn’t see her children grow up. More than 20 years later, she has hope that she and her husband will grow old together, watching their grandchild grow up.
Determined To Be Defined by More Than PH
The past 23 years have shown Dawn Meador how strong she is. Since her 1998 diagnosis, she’s learned much about herself and how to appreciate little things. Dawn, of Suffolk, Virginia, shares her long-time pulmonary hypertension journey for the Pulmonary Hypertension Association’s 30th anniversary.
Familial PAH Diagnosis Prompts Need to Give Back
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
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
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
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
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
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.
Post-Transplant Life is Tough. But This Teen Feels Blessed
Diagnosed with PH when she was born, Sarah Donoughue spent most of her life living with pediatric PH. In 2019, she received a double lung transplant. Read her story.
Reenergized and Holding on to Hope
In 1966, 8-year-old Laura Hooley underwent surgery to repair a congenital heart defect. The surgery allowed her to play volleyball, ski and enjoy relatively good health. But her CHD eventually led to pulmonary hypertension. For American Heart Month, she shares what gave her new hope.
‘Can-Do’ Outlook Replaces ‘Sick Girl’ Self Pity
When Kathleen Grady started the Remodulin pump 11 years ago, she was sick, in pain and miserable. She felt sorry for herself all the time, especially after reading friends’ Facebook posts about fun activities. One day, she had an ah-ha moment.
The Pandemic Delayed My PAH Diagnosis
Mark Synder of Waxhaw, North Carolina, was awaiting a cardiopulmonary exercise test in March after his first visit to a pulmonary hypertension specialist. The test was canceled as the COVID-19 pandemic forced clinics, businesses and public spaces to close.
Emergency Prep: Surviving Poor Air Quality
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.
Pastoring in a Pandemic and Finding Resilience
Diana Lewis, 57, lives in Rio Rancho, New Mexico, with her husband, Adrian, and her son Joshua. Lewis, a pastor, was diagnosed with pulmonary hypertension five years ago. She shares her story about dealing with the COVID-19 pandemic.
Newly Diagnosed and Persevering
Lisa Laughlin was terrified after her husband Michael fell and passed out in 2017. He had been short of breath for more than a year and no longer had energy for his nightly walks. His diagnosis of a disease they’d never heard of was equally frightening.
Advocate Undaunted by Lupus and Lung Disease
Rosemary Graham, of Atlanta, Georgia, is a long-time advocate for people with rare and chronic diseases. She was diagnosed in 2012 with pulmonary hypertension (PH) related to lupus, pulmonary fibrosis and sleep apnea. This is her story.
Devastating Diagnosis Doesn’t Keep Veteran From Pursuing Dreams
Aisha Woods Zarb-Cousin lives in San Antonio, Texas with her husband Adam, her 13-year-old stepdaughter Zion, and their dog Zoe. She retired from the Air Force in 2010 after seven years of active duty service. This is her story.
PH Upends Housewarming, Holidays and Young Mother’s Health
“Processing my diagnosis alone in the NICU was rough. I didn’t really understand the gravity of it all. It didn’t feel real.” Amy Dolan, 30, lives in western Rhode Island with her
Gaining Inspiration and Energy from Support Group Members
Alicia Kubes was diagnosed with pulmonary hypertension in 2018. Along with her sister she started the New York City-Manhattan support group. She is aware this is a road no one should walk alone and
Born with Collapsed Lung, 36-Year-old Awaits Double Lung Transplant
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.
19 Years After Diagnosis: Keeping Fit and Staying Hopeful
Lorraine Polston of Amarillo, Texas, was diagnosed with idiopathic pulmonary arterial hypertension (PAH) in 2001. A registered nurse since 1992, she and her husband have three sons and five stepdaughters. This is her story.
Coming to Terms with PH
Jenny Phillips, 52, lives in Woodridge, Illinois. She has a sister, two brothers (including her twin) and nieces and nephews. An army veteran, she has been a dispatcher for the Illinois State Police for 17
Meet Samuel Hall: Inventor, PH Patient and Sarcoidosis ‘Warrior’
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.
Ranolene Pillay Remembers Her Mom
“My mom taught me many things, but one thing in particular I want to share with all the PHighters...Sometimes the road may get tough, but darling, you are tougher!” By Ranolene Pillay
Lindsey Wheeldon Remembers Haley Willow
“PH wasn’t her identity. Although she was open about having this condition, it never once held her back.”
How Chelsea Kennedy’s PH Diagnosis Changed Her Life
Chelsea Kennedy, 27, has been living with pulmonary hypertension (PH) since 2018. She lives with her five children, husband and three dogs in Winston-Salem, North Carolina. She is studying cardiovascular technology, which she became interested in after her PH diagnosis.
How a PHA Support Group Helped Patient Advocate for His Health
'If I didn’t advocate for myself and put matters in my own hands, I would still be suffering until this day.' By Robert Stewart On March 17, 2017, I could hardly breathe as
Meet Vlogger Quinland Folkestad, Who Thrives With PH
“I thought my life was over, but through the PHA and friends and family and doctors, I found the help I needed.” In recognition of Rare Disease Day and American Heart Month
Melissa Hembree: My Heart Is Getting Stronger
As I’ve gotten older, my heart seems to be getting stronger. I am on medications for my heart and two medications for my PH. Each test comes back better than the last. I am kicking PH’s butt. If I can do it, so can you!
It Takes ‘The Right Heart’ to Be a Caregiver
“I accept this job with a thankful heart and the attitude that I will do everything possible to ensure my husband lives his best life, in the best quality possible. I count my blessings for
Lisa Goldstein: Congenital Heart Defect Leads to Recent PAH Diagnosis
“This year, 2020, has brought me new challenges, but it has also brought me new hope. I feel connected to patients like me, patients I can finally relate to.” I was diagnosed
Aubrey Stout: 10 Years Since Diagnosis and Life Is Getting Better
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,
Anna Lindner: Challenges and Benefits to Growing Up With PH
Anna Linder was diagnosed with PH when she was 17 years old. She wants PH patients of all ages to know that PH will not beat them. Read her story.
Staying Hopeful With CTEPH Diagnosis
“I take each day as it comes with an optimistic approach to my CTEPH.” By Joyce Sandberg We moved to Port St. Lucie, Florida, in 2014 after living in Fort Lauderdale for
PAH Diagnosis Leads to Self-Discovery
“The road between then and now has been a long one. I have learned so much about life and who I want to be.” By Kimbery Toland "I was diagnosed with severe
Sydni Burgess (caregiver)
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.
Riley’s Story
As a toddler, Riley Weigle was a healthy child. But at age 3, she was diagnosed with idiopathic pulmonary arterial hypertension. Read her story.
Brigette Thompson: This Is My PAH Story
I am Brigette Michelle Thompson and this is my PAH story. 'Every day that I wake up is a good day because I am still here.' By Brigette ThompsonIt all started one morning
My Long Journey to PH Diagnosis and My Hope for the Future
“I’m working and raising my children. I’m currently writing a book and creating a blog, so that I can tell my full story. I’m so glad my children can see their mom LIVE with
Traveling Salesperson Embarks on New Journey With PH
By Eileen Lepionka “I could barely make the walk through the yard, which was only about 150 feet.” "My Pulmonary Arterial Hypertension (PAH) journey began in August 2014. I was an
Gail Merz: PH Warrior Advocates for PH Education
'I live day to day never knowing what the day will bring to me... I just thank the Lord every day for giving me the day and pray for one more.' By Gail
Fighting Lupus and PH: Bernadette’s Story
"2004 and 2007. Years that were life altering but have led me to my new normal. They are the years I was diagnosed with lupus and pulmonary hypertension (PH) respectively. "Hello, my name is
Find the Right Fitness Routine for You: Rebekah Calverley
Rebekah Calverley is a firm believer that the road to a good health includes fitness, but she is very aware that with pulmonary hypertension she will not be running a marathon any time soon.
New Lungs Make Lauri Stanfield an Ambassador of Hope
“ I...love to tell my story and what organ donation has done for me, and how it’s affected my life as well as the lives of my families and friends.” "My name
Michelle: Mom of Two Has Second Chance at Life After Transplant Surgery
“The change in my life and my recovery is nothing short of amazing. I will be forever grateful to my donor and her family for the precious gifts they gave me. I will cherish
Barbara Holden: Train Adventure to Double Lung Transplant
Barbara Holden, a native from Massachusetts, knows very well what a life with limitations is like. And that was her motivation to push forward and get what she needed, a double lung transplant and heart
Tina Proulx: From A Double Lung Transplant to Rollercoaster Rides
“I don’t know anything about [my organ donor], but they are MY HERO.” “I would like to start off by saying that I am here today because of one person and I
PHight like Shanta: Aaron Duncan
“You were chosen because you are PHighters and PHighters never back down from a PHight.” “Being diagnosed with pulmonary hypertension (PH) does not mean the end of life, rather the beginning of
Christa: Comedians and Exercise Help Keep Attitude Positive
Christa, from Atlanta, Georgia focus on comedy and positivity to move forward with her pulmonary hypertension diagnosis. She was diagnosed in 2010 and have managed her condition with medications supplemental oxygen. 'Luckily, some friends directed
Qiana Lomax: The Importance of a Support System
“I am extremely glad I have friends and family that are helping me through this process, no one should do this alone.” “I am 21-year-old college student studying to be a Physician
Learning to Deal With a Chronic Illness
“When the pulmonology team met with my husband and me and tried to explain CTEPH, I simply broke down.” “I am 57 years old and was diagnosed last November at the University
Living With Two Rare Diseases
“Rare Disease Day is not just about PH; it is also a recognition of the many rare diseases for which resources and funding are often limited.” By Shan Hardwick “I have PH,
Catherine Sta Maria
'She's [mother] been experiencing difficulty breathing for eight years, but her cardiologist told us it was because of her age — 80 years —and it was only in her mind.' My mother has pulmonary
Joy Broadstock: Lack of Insurance Makes PH Journey Difficult
“I had noticed for almost a year now that I had shortness of breath. I thought it was because I had gained some weight.” “I am a 62-year-old woman. I had noticed
Marybeth Alteneder: A Reminder to Remain Hopeful
“I want to take this opportunity to give hope to those people newly diagnosed.” “When I was first diagnosed and read about PH [pulmonary hypertension] online, I was very scared. My doctor
Claudine Saxton: My PH Journey
'I am not sure what to expect. Will these symptoms stop or am I going to have to live with them?' By Claudine SaxtonI am a 78-year-old lady. I have been having symptoms of
Daisy Shaji: Faith Keeps Her Going
“Many times, I felt that I was reaching the end. Every time, however, Jesus lifted me up and gave me new hope.” “In January 2006, I was admitted to Christian Medical College
Dolores Davis: Grants Help Pay for Life-Saving Meds
“Thank God for the grants that help pay for specialized medication!” “I was undiagnosed for several months. I was getting shorter of breath every day. I was almost to the point of
Joseph Hall: My Teen Son’s PH Diagnosis
“The reason I am sharing this story is awareness. I want as many people I know to be aware of this diagnosis in honor of [my son] … in hopes that such a tragedy
Jamie Prettner: Staying Active Through CTEPH Journey
'Although having CTEPH has caused me a lot of pain, sadness and anger, it has allowed me the opportunity to meet such amazing, supportive, people through conferences and support groups. These wonderful people gave me
Gerry Langan: Getting PAH Diagnosis as Mother of Young Twins
My name is Gerry, and I am 29-years-old. My husband is in the Army and we have identical 16-month-old twin boys. 'I'm thankful for the clinical research that has led to my pump and Remodulin
PH Angel Families Would Give Anything to Do Anything ‘Normal’ for Their Kids
“So, when you are thinking about all of the things you did for your kids today, think of all of the PH Angel families that would give anything to do anything "normal" for our
Five-Year Old Callie Inspires Parents to Fight for a PH Cure
Callie's young life changed forever in 2017. This is her story, told by her mother, who has been present in every battle. 'We will not stop fighting for a cure! In the meantime, we
Staying Positive Through Diagnosis: Elaine Lozano
"I was diagnosed with pulmonary hypertension in 2016 when I was 22 years old; now I’m 24. It’s been a hard, rough road and it has changed my life for the worst and for
Divorce, Cancer and PH Are No Match for Sylvia Kujawa’s Strength
“I went through a divorce and cancer at the same time in 2008, but I got through that. I had cancer for the second time in January 2012, and I have had pulmonary hypertension
Colleen Brunetti: Reflections on the Power of Telling Your Story
'...my first steps into leadership at PHA began by sitting in on a focus group... I told my story, and I was heard.' My name is Colleen Brunetti, and I am your Pulmonary
Becca Hubbard: Find a Way to Make Someone’s Life Better
Becca Hubbard, from Ohio, is a full time worker and a mother of two young kids, diagnosed with idiopathic pulmonary arterial hypertension. She shares her story of how Campus Campaign, The Ohio State University annual
Rebekah Calverley: Tips for Self-Care
“It's always tough to say no to events or be unable to do things because a “bad day” is too hard to overcome. Doing small day to day things to help lessen their frequency
Kim Crowell: Liver Transplant Provides a Second Chance
“None of this would have been possible without the brave, caring person who was an organ donor… Because of her precious gift of life, I’m healthy again and getting to live my second chance
My Journey with CTEPH
Angela Michelle of San Antonio, Texas, was diagnosed with CTEPH thanks to a friend, a Facebook post and her persistence to find the right doctors. After her January 2018
Mother’s Death Seven Years Ago Illustrates Need for Awareness
“I am writing this to serve as a warning to others to watch for PH symptoms.” “How ironic for me that Nov. 8 is National PH Day of Action during PH Awareness
In Memory of Shanta Duncan: My Wife with PH
'Advancements in PH treatments helped prolong my wife’s life but making the most of life was completely up to us. My wife was not going to be one to sit around and let this consume
PH Didn’t Keep Aunt Pat From Her Mission – to Help in Any Way She Could
“I want others to stay positive and know that life is precious. Take time to savor the small things. Enjoy one another. Love others. Be kind.” – Nicole Lowe By: Nicole Lowe
PH, Cancer and Heart Failure no Match for Survivor Constance Claypool
Born in 1947 in Rutland, Vermont, Constance Claypole have lived in many locations during her early life, but finally settled in Galveston, Texas. She loves it there, where her first dream come true!
Post-Transplant Life is an Unexpected Adventure
By Kathleen Sheffer From left, Kathleen and Monica in the German Alps, with help from a self-timer. Against a fair amount of unfavorable odds, I will be photographing PHA’s 13th International PH
Rebekah Calverley Lives an Amazing, Beautiful, Fearless Life with Pulmonary Hypertension
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
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
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
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
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
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
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
The Right Heart Video Series: Kerry Babylon
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
Jaxon’s Story: The Highlight of Our Day Every Day
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
Darby Hetrick: “I Don’t Let PH Hold Me Back”
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
My Return to Gardening After CTEPH
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
Shavini’s Story: “I Don’t Worry About What I Have No Control Of”
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,
Support Group Leader Bill Kolms’ CTEPH Story
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
Passion to Profession: Following My Mother’s Faith and Tenacity
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
The Right Heart Video Series: Dancing My Way Through Pulmonary Hypertension
'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
My “Pre-Existing Condition” Started at Birth – How I Fight for Access to Care
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
The Right Heart Video Series: Darby’s Story
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
Two Lives Turned Upside Down in Ohio
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
More Than a Spectator: Living My “New Normal” With PH
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
This Is Your Journey: Lessons in Transitioning from Pediatric to Adult PH Care
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.
Family Rallies Around Child Living With PH: Everybody Deserves the Dream of “When I Grow Up…”
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
Coming Full Circle: A Filmmaker’s Journey
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
Travel by Train: My 1,200 Mile PH Adventure
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
My Husband’s Unexplained Illness and PH Diagnosis
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
Inadequate Coverage Nearly Cost Me My Life
'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