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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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.
Pump Life is Tough. But Family, Friends and Hot Sauce Help Patient Stay Positive
Chloe Merritt, 22, is still getting used to a low-sodium diet, lack of energy and the challenges of a subcutaneous pump after her September 2022 diagnosis. But the life-changing experience has brought her closer than ever to family and friends. And it led her to a new favorite food. Chloe shares her positive outlook in the Right Heart Blog.
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
“As Dean’s illness progresses, living each and every day is precious. We don’t take it for granted.” Georgette Bridger and her husband of 27 years, Dean, live in Suffolk, Virginia. Together
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).
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.
How 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 (PH) specialist. The test was canceled as the COVID-19 pandemic forced closures of clinics, businesses and public spaces.
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 of 28 years, Adrian, and her son Joshua, 29, who has autism spectrum disorder. Diana, a pastor, taught pre-K and elementary school for 14 years. She was diagnosed with pulmonary hypertension (PH) five years ago. She shares her story about dealing with the 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
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
“I wanted to give up, but with lots of prayers and faith, I eventually started improving.” By Lorraine Polston Lorraine Polston of Amarillo, Texas, was diagnosed with idiopathic pulmonary arterial hypertension (PAH)
Coming to Terms with PH
“I have a long road ahead of me, but one day at a time, right?” Jenny Phillips, 52, lives in Woodridge, Illinois. She has a sister, two brothers (including her twin) and
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
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
“I fish, travel, camp and go to festivals. I've come a long way, and I'm proud of myself.” On Jan. 10, 2010, I was told I had idiopathic pulmonary arterial hypertension (PAH). The
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.
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
“Every day that I wake up is a good day because I am still here.” “It all started one morning in 2011 when I went to work. I parked in the parking
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." "I resided
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
“If I don’t push myself a little, I know I would just sit on the couch and a vicious cycle would ensue.” "This month the Boston Marathon took place. A culmination of
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
“I feel so blessed to have been given this second chance opportunity. It never would have happened had it not been for someone who became an organ donor.” "You may remember my
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
“Luckily, some friends directed me to the PH Association website… That restored my hope!” "Hi. My name is Christa and in May 2010, I was diagnosed with idiopathic pulmonary arterial hypertension (PAH).
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
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?” “I 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
“I'm thankful for the clinical research that has led to my pump and Remodulin and I hope that my story will be one that helps raise awareness for the seriousness and severity of PH.”
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
“We will not stop fighting for a cure! In the meantime, we will continue cherish every moment we have because, as Callie has taught us, you never know what tomorrow may bring.”
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 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
Becca Hubbard: Find a Way to Make Someone’s Life Better
“If I’d never been diagnosed with PH, I don’t think I would have developed the interest in fundraising that I have… most days I struggle to find anything positive in my PH diagnosis, but
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
“Throughout my journey I have found that there is not enough awareness about PH and CTEPH. So, I have made it a personal mission to help raise awareness so that through early detection and intervention,
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
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
“Through it all, I am a survivor! I will not be defined by this disease. I will continue to do the things I love to do!” by Constance Claypole “I was born
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
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
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
Darby Hetrick: “I Don’t Let PH Hold Me Back”
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
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
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.
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
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-
Inadequate Coverage Nearly Cost Me My Life
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.