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Patient story

Perry Mamigonian

Perry MamigonianMy name is Perry Mamigonian and I was diagnosed with Idiopathic Pulmonary Hypertension (IPAH), Class III/Severe in March 2009. For several years prior I struggled with shortness of breath and fatigue, but just blamed myself for being out of shape, overweight and just getting older. By late 2008, I began to feel much worse. I was catching frequent colds and was left feeling achy and weak, as if I had the flu. I also developed a frequent cough with spells so bad that I would become dizzy.

On March 11, I had a coughing spell so severe that I blacked out and crashed as I was driving to work. Fortunately no one else was hurt, but while I was recovering in the hospital they began running tests to determine why I had passed out. After about a week the verdict was in: I had IPAH, which was something I had never heard of. On March 18, I began my Remodulin therapy and was declared unable to return to work in the printing industry I had been in for 25 years.

Like so many, the shock of having my life turned upside down was too much to take. I was filled with anger and self-pity, with no desire to get out of the house. It was when I received a phone call from Kelli Danner, the Accredo Community Advocate in Northern California that I began to see the light in dealing with my condition. Kelli gave me encouragement and compassion when I was feeling completely alone and isolated. She also urged me to attend the Southern California PHA International Conference and Scientific Sessions in June 2010 and even arranged a scholarship so that I could afford to go. It was here that I had the opportunity to meet other pulmonary hypertension patients for the first time. There were so many kind people that reached out to me with advice and re-assurance. It was also the first time that I experienced first-hand the hard work of the Pulmonary Hypertension Association. The first thing I did when I returned home was send in my membership check.

I also met Joanne Sanders from United Therapeutics and signed up in their Remodulin Therapy Assistance Program. She has become a good friend and helps me feel like a normal person, not just a patient. Since then I have met many other “PHriends” in my hometown and online. Their stories have been heart-breaking and encouraging – all have been inspiring. If there is anything positive about having PH, it is in learning how kind and generous people can be. From my doctors, pulmonary therapists, family, friends and fellow patients I never realized how good people can be until you need help. I have been fortunate to show much improvement in the last 14 months, and while nobody knows what the future holds, I do know that there will always be a lot in life worth living for and a lot worth fighting for.

Perry Mamigonian

 

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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.