Stories of Diagnosis

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Have you been diagnosed with pulmonary hypertension? If so, we would like to hear your story of diagnosis.

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The Faces of Pulmonary Hypertension

Research shows it takes too long for patients to be diagnosed with pulmonary hypertension, but it is important to remember how these facts and figures impact the lives of real people. Lost time and misdiagnoses have real consequences in people's lives. The Pulmonary Hypertension Association has collected lots of stories from patients about their diagnosis. Here we highlight a few of those stories, stories that are representative of the all too common problem of misdiagnoses and waiting way too long to get an accurate diagnosis.

Read stories in English | Lea cuentos en Español

Sometimes it’s PH Journeys in English

Sometimes It's PH

Larry Bush

"He told me I had pulmonary hypertension. I had no clue what that meant. Then he explained to me that it was a terminal lung disease with no cure." Read full story

Sometimes It's PH

Kathy Morton

"In August of 2004, at the age of 34, I decided to take a taekwondo class with my children. I was a bit out of shape, but nothing too bad. As it progressed into Spring I began to notice that I was getting more out of breath and occasionally dizzy during a workout. It seemed odd that I was more out of shape after several months than I was when I started, so I scheduled a physical with my general practitioner in March." Read full story

Braden Buehler

Braden Buehler

"It started with stairs. Several months after the birth of my son, I carried a laundry basket up from our basement.  When I reached the nursery I was gasping for breath.  I sat down. Then I had to lie down—sides heaving, head swimming, heart pounding. Eventually my breathing slowed and I sat up, bewildered. I’m out of shape, I thought. I’m working too hard. I never get any sleep. Still, I called my doctor’s office." Read full story

Sometimes It's PH

Lynda Gettier

"Five years to live. That's the number the doctors recently gave me. That's a very scary number when you have two young children." Read full story

Raaitjie Lock

Raaitjie Lock

"I had a constant heavy burning feeling on my chest and more problems with angina and dizziness. I got out of breath and had heart cramps when I bent down or lay down. This had become a lifestyle." Read full story

Jacky Kelly

Jacky Kelly

"I was diagnosed with pulmonary hypertension (PH) this year in May 2012. Personally I think that my journey with undiagnosed PH goes back about 20 years or even back to my early childhood." Read full story

Shaye Meyers

Shaye Meyers

Shaye is 12 years old, diagnosed with primary pulmonary hypertension (PPH) in March 2010. We live in Houston, Texas and see the pulmonary hypertension (PH) team at Texas Children's Hospital in Houston. Shaye has a central line and is on IV Remodulin, Revatio, Tracleer and Coumadin as well as Prevacid.

Shaye was diagnosed with extreme anxiety in 2007, but during the two years that followed her symptoms would continue to get worse. Her doctor would say her heart palpitations, dizziness, sweating, nausea, chest pains and shortness of breath were all due to anxiety. What we would find out later is all of this was caused by something else, something we could never have prepared ourselves for. Read full story

Maria Dolores Paez Cuenca

Maria Dolores Paez Cuenca

Hello: For me life turned around. I stopped doing a lot of things: I couldn't run with my children, go to the park, or play as much because any physical activity made me tired. Read full story | Lea en español

Aine

Aine's Story

As told by her family

"Aine died on August 10, 2010. She was eight years old. Her death was caused by a disease called Pulmonary Veno Occlusive Disease (PVOD). Although this disease is uncommon, it is imperative that people know about it as it is a cause of pulmonary hypertension (PH). PVOD presents medically as PH. It is thought that PVOD might be the culprit behind some cases of idiopathic pulmonary hypertension. In our case, that was true." Read full story

Sometimes It's PH

Violet Ladd

"My story starts out in July of 2006 while I was working 12 hour shifts as a certified nurses aide. My breathing became harder at times and while at a doctor's visit with my husband, I told the doctor about my problem. He said i should have a chest xray and an electrocardiogram so the next day that's what we did." Read full story
Lorena Dávila Hernández

Lorena Dávila Hernández

"My name is Lorena Dávila Hernández, and my story with diagnosed pulmonary hypertension started May 29, 2006. Obviously by this date I had already presented with almost all the symptoms and honestly I have no idea how or when they started; the only thing I know is that I felt that I tired easily and that I was a little short of breath, but I didn’t pay attention and simply thought it was because I was gaining weight, and just went from there." Read full story | Lea en español

Sometimes It's PH

Aggie Stefanelli

"I had been telling my primary doctor that I just didn't feel right and couldn't really take a nice, clean deep breath. He always said it was anxiety or menopause, so he put me on anti-anxiety meds." Read full story

Nairivis Maiz Gonzalez

Nairivis Maiz Gonzalez

"I have been in a constant battle with this disease." Read full story | Lea en español

Nicolene and Nico Muller

Nicolene Muller

"My GP did an ECG, but could not find anything wrong. He also sent me for an X-ray of my lungs and heart to see if I possibly had asthma. He said I was overweight and needed to do more exercise." Read full story

Sometimes It's PH

Patricia Monica Rosemburg

"Good afternoon. I am Patricia, the mother of 14-year-old PH patient Agustín. He was born prematurely at 37 weeks gestation, weighing 1050 grams." Read full story | Lea en español

Joan Godber

Joan Godber

"I had been very gradually getting short of breath for years but had always put it down to the asthma that had been diagnosed in 1990. Doctors had just changed my medication when I complained it wasn’t working like it used to. Boy was I wrong!" Read full story

Sometimes It's PH

Mauricio Sánchez

"My name is Mauricio Sánchez. I am 43 years old, weigh 110kg, and have sleep apnea. Two years ago I was diagnosed with PAH." Read full story | Lea en español

Sometimes It's PH

Becca Hubbard

"Every night, I pray for a cure, better treatment and better diagnoses to help everyone who has this." Read full story

Denneys Niemandt with his wife Sonja

Denneys Niemandt

"I asked my wife twice why the lights were switching on and off in the showroom — I didn’t realize I was having a blackout." Read full story

Silviabb Galvan

Silviabb Galvan

"Since about 4 years ago, I started to feel an extreme fatigue. Since I was diagnosed at 12 with Reynaud’s, I have always associated any strange symptom with that disease. Then in March of 2009, I had pneumonia that I almost didn’t notice and thus took a long time to recover." Read full story | Lea en español

Brandi Stickney and her daughter

Brandi Stickney

"I had gone to see my primary care physician many times. He kept telling me it was asthma and gave me an inhaler. If that didn’t work, we’d do a chest x-ray. This went on for about five months until I’d had enough and quit going to the mall because I kept passing out." Read full story

Barbara Thompson

Barbara Thompson

"My husband took me to 14 different doctors before one of them had the sense to run an echocardiogram. I had been bedridden for almost 2 years." Read full story

Jackson Wall

Jayna Wall

"He tried to explain everything to us but we were both in shock...this just had to be a nightmare and we would wake up right?" Read full story

Robyn Heinrichs

Robyn Heinrichs

"In my heart I knew something was wrong, but couldn't possibly figure out what it was so I told myself and everyone else that I was just really out of shape." Read full story

Lucas Van Wormer

Lucas Van Wormer

"We just noticed that he was sluggish and not feeling well,” says Lucas’ father, Steve Van Wormer. “He was basically being misdiagnosed with asthma." Read full story

Yunena Morales

Yunena Morales

"During all those years (of misdiagnoses), I spent millions of dollars in doctor’s visits, tests, counseling, medication, and hospitalizations." Read full story

Marcia Beverly

Marcia Beverly

"After 15 months of many doctor visits, including a cardiologist and pulmonologist and many, many tests showing nothing amiss, and being diagnosed with asthma, I learned that I had quite a serious disease. I was in left heart failure by then, with several side effects and had pulmonary hypertension." Read full story

Kristie Coulter

Kristie Coulter

"My PPH (primary pulmonary hypertension) came out with pregnancy in May 1999. I wasn't diagnosed until July of 2001. By then, I was blue from head to toe and could hardly walk. I had many other symptoms as well that come along with severe PPH. They had attributed my symptoms to the pregnancy...then to severe asthma." Read full story

Marla Akins

Marla Akins

"After calling around, I found one (a doctor) that could see me the very next week. He said that my symptoms sounded like exercise induced asthma so he prescribed me two inhalers, and we made a follow up appointment in two weeks. After the first week, I felt no relief so I called the doctor and he recommended I inhale more often while running. That did not help, and I informed him at the second visit." Read full story

 

Sometimes it’s PH Journeys en Español

Maria Dolores Paez Cuenca

Maria Dolores Paez Cuenca

Hola: Para mi la vida me dio la vuelta, deje de hacer muchas cosas no poder correr con mis hijos, ir al parque y limitarme de jugar porq cualquier actividad fisica me produce cansancio. Lea en español

Lorena Dávila Hernández

Lorena Dávila Hernández

"Mi nombre es Lorena Dávila Hernández y mi historia con Hipertensión Pulmonar Primaria ya diagnosticada comenzó el 29 de Mayo de 2006, obviamente para esa fecha yo ya había presentado casi todos los síntomas y honestamente no supe darme cuenta cómo o cuando comenzaron, lo único que sé es que yo sentía que me cansaba, era una pequeña y ligera falta de aire, pero no le tomaba importancia y sólo creía que estaba aumentando de peso y así seguí." Lea en español

Nairivis Maiz Gonzalez

Nairivis Maiz Gonzalez

"Desde ese momento estoy en una constante lucha con esta enfermedad." Lea en español

 
Sometimes It's PH

Patricia Monica Rosemburg

"Buenas tardes soy Patricia la mamá de Agustín de 14 años el tiene hp. Nació prematuro de 37 semanas de gestación pesando 1050 gms." Lea en español 

Sometimes It's PH

Mauricio Sánchez

"Mi nombre es Mauricio Sánchez, tengo 43 años, peso 110kg, padezco de apnea del sueño, hace 2 años me diagnosticaron PHA." Lea en español

Silviabb Galvan

Silviabb Galvan

"Hola, desde hace 4 años aprox, comence a sentir un cansancio muy extremo, como desde los 12 años de edad fui diagnosticada con Reynaud, siempre se relacionaba cualquier sintoma extraño con dicha enfermedad." Lea en español

 

 

Read stories of more patients as they share their journeys with pulmonary hypertension

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.