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 disease back then. We knew she needed a lung transplant but never received one. The roughly two years that she

September 28th, 2017|

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 is made by recommendation of a patient’s doctor and other times it may be due to personal preferences. Planes and

September 27th, 2017|

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- and seven-year-old on my own. (This post is the first in a three-part series by this author) January 2016 It

September 20th, 2017|

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. Despite the advice of my doctors, they called it experimental. I was left stranded, fighting for my life and trying

September 19th, 2017|

Announcing “The Right Heart” – New PHA Blog Series of People Living Their Best Lives With PH

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,

September 19th, 2017|