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Phenomenal Lives

From patients and caregivers to healthcare professionals and donors, members of the pulmonary hypertension community are living PHenomenal Lives. In this section, the Pulmonary Hypertension Association spotlights stories from our community members who inspire all of us to further PHA's mission: providing hope for the PH community through support, education, research, advocacy and awareness.

Some of the stories below are drawn from The New Normal, a print resource that documents how patients are finding meaning and strength in life after a diagnosis of pulmonary hypertension. Download this PDF resource or order a free print copy through the PHA Store. Other stories are drawn from the PHenomenal Lives features in Pathlight, PHA's quarterly magazine, which is available as a benefit of PHA membership.

Perry Mamigonian

Perry Mamigonian 

I first started to experience shortness of breath in 2001. I’d had tickets to the local college football games for years, but that season I noticed that I could no longer walk long distances or climb the stadium stairs without stopping to rest. I blamed it on my weight, age and a lack of exercise. For seven years, this was my only symptom. My physician told me I needed to exercise and lose weight.

Pat Mayerchak

Pat Mayerchak

I consider my music to be a gift. Reuniting with the Shōguns after almost 45 years is a dream come true, something to be thankful for. I'll be 73 in August, and I have pulmonary arterial hypertension (PAH). So, what am I doing writing, recording and playing ‘60s rock ‘n’ roll? It's simple. I love it. I don't expect that this music is everyone's cup of tea. So, I would hope that my fellow PH travelers would be able to look in the mirror and ask themselves, "What dreams do I have yet unfulfilled?" I think this might be really important for all of us.

Mitch Koppelman

Mitch Koppelman 

Our older daughter, Kelly, passed away suddenly in 1993 at age 16, and upon autopsy, cause of death was determined to be PH. While we had known that my sister-in-law also passed suddenly from PH in the early 1980s, we knew little about the disease and nothing about the potential of familial linkage.

 

Heather and Alexah

Team Alexah

In Prosper, Texas, a suburb outside of the city of Dallas, Team Alexah is already preparing for this year’s 2016 Zebra PHest 5K & 1M PHun Walk, which is eight months away. A word used to describe Heather Hebert, who leads Team Alexah in honor of her daughter, is “driven.” As she says, “Our involvement in the first Zebra PHest inspired me to do more, and it has snowballed with each year.  Read more

Soumya Thomas

Soumya Thomas 

My PAH journey began in 2007. A friend noticed that I was out of breath while I was on the phone with her. I’d always been very healthy and never suspected that anything could be wrong with me. Being a nurse, and thus the worst kind of patient, I ignored her concerns, even after I started feeling dizzy and noticing my heart rate rising whenever I did anything strenuous. Then, one day at work, I suddenly began feeling really dizzy. Read more

Greg Fuller

Greg Fuller

My CTEPH experience started in July of 2010 as I was swimming with some friends in a lake in Maine. I’d always been a fairly decent swimmer and rarely had I ever had to stop swimming and tread water like on this particular day. Short of breath, I rested a few minutes thinking, “It must be the weather” and continued on. I didn’t have any similar episodes until a couple months later when I was climbing a mountain with some friends. I’d always prided myself on being able to keep up or lead the group while climbing mountains, swimming, hiking, or – my favorite pastime – snowshoeing. Read more

 

Diane Ramirez

Diane Ramirez

I was diagnosed with pulmonary arterial hypertension in 1987. I had been sick for close to three years before I got the correct diagnosis. Growing up, I had asthma, so when I told my doctor that my breathing was worse and I was getting tired, my asthma was treated more aggressively. After a couple of months with no response to the new asthma medication, I went back to the doctor with the same complaint. The difference was that by this time, the fatigue had begun to set in. Read more

Leslie Polss

 

Leslie Polss

As featured in Pathlight, Fall 2015: Last winter I went on a trip to Fairbanks, Alaska. I travelled there the previous winter, too. Why go to Alaska in the winter? I went to see the Aurora Borealis! It had always been a dream of mine to see the aurora. I pictured myself snowmobiling across a glacier and sleeping in a yurt on the frozen tundra under a mysterious green sky. Read more

Christen White Cranford

Christen White Cranford

Steve White and his family are among PHA's most PHenomenal contributors. Their generous donations to establish the Christen White Cranford Pediatric PH Research and Mentoring Grants help propel us forward in the fight against pulmonary hypertension. Read Steve’s story as he remembers and celebrates the life of his daughter Christen and learn how named research grants can make a difference in the lives of those affected by PH. Read more

Jonathan Broome and his wife Ornah Levy Broome

Jonathan Broome

As featured in Pathlight, Fall 2015: There is a feeling of helplessness that comes with watching a loved one struggle with a disease. For me, taking on the responsibility of ordering medications, doling out pills, and mixing medication so that my wife doesn't need to worry about those things is key to fighting that feeling. Read more

Michael Alsman and his wife Tiffany Gunderman

Michael Alsman

As featured in Pathlight, Fall 2015: Though a caregiver lives with the impact of the disease on a daily basis, we can never really know what it is to have PH. I think the best thing a caregiver can be and do is to be understanding, be encouraging, and support your loved to stay active in the community. Read more

Delanie Foreman

Delanie Foreman

As featured in Pathlight, Summer 2015: When I was diagnosed in September 2012, at the age of 19, with lupus and pulmonary hypertension I was a student at the University of Louisiana at Lafayette. I remember trying to walk up the stairs to a fifth floor classroom and having to stop on the second or third floor to take a break because I couldn’t breathe. Read more

Eric and Jan Skuldt

The Skuldt Family

The Skuldts are PHenomenal donors who have honored their granddaughter by establishing Cordelia's Pediatric PH Research and Mentoring Grants, which will improve the lives of children affected by PH for years to come. Learn how named research grants can make a difference. Read more

Christine Williams

Christine Williams

As featured in Pathlight, Summer 2015: In May 2009 I was diagnosed with idiopathic pulmonary fibrosis (IPF) and a few short years later with pulmonary arterial hypertension in October 2013. My PH is secondary to my IPF and I had never heard of either disease until my diagnoses. Read more

Susie Alvarez

Susie Alvarez

The story of my journey begins in 1983. I moved to Los Angeles, met and married my late husband. I then began working full-time for the state of California in 1984. My life was full with family events, work projects, vacations, and much fun and promise. Read more

James Grea

James Grea

My name is James Grea. I write stories for children with a magical fountain pen named Solomon J. Inkwell. I spend a great deal of my time writing about Boogey Men and things that go bump in the night. I love spooky tales. They are my favorite. My monsters are harmless and even quite fun because they are imaginary. But there are times when monsters can be real, and sometimes they can even live inside of you. Unfortunately, I discovered this almost three years ago. Read more

Doug Taylor

Doug Taylor

Each of us has our story of the journey we took to be diagnosed with pulmonary hypertension. I am no exception. Most of us have some striking similarities, but then there are differences, too... About two years before being diagnosed, I started noticing some unusual symptoms. Unusual for me, anyway. Read more

Kia Thompson

Kia Thompson

My story began after my son was born in 2006. My husband and I were on top of the world because we had tried for 10 years to have a child and never thought it would be our reality. But God blessed us with our son! Soon after having him, I began to experience extreme fatigue, which I thought was from being a new mom. Read more

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