OUR JOURNEYS

Patient story

Rosanne Huber

My journey with PH has been slightly different than most other PH patients. By sharing my story my hope is for others to benefit from an early diagnosis.
 
I was diagnosed with mild (exercise-induced) PH in January 2006. As a runner, I had noticed a decrease in exercise tolerance, increased leg fatigue, an increase in heart rate, and shortness of breath with simple activities. Early on, I consulted a pulmonologist, who ordered a PFT (pulmonary function test). My PFT was normal, and he had offered no explanation as to my symptoms. I am aware of how frustrating it is when you know something is wrong, but you leave an office without an explanation for your symptoms.

Approximately two years later my symptoms were becoming worse. We had moved to the New England area from Florida. The difference in areas was significant. There were more hills for me to climb while running, which made exercising more challenging and difficult. The home we lived in had stairs and a basement as well. Climbing stairs provoked my symptoms. I would develop shortness of breath, an elevated heart rate, and occasional lightheadedness. I knew something was wrong and decided to get another opinion with Dr. A. Waxman (a pulmonologist) in the Boston area.

After all the tests were done that he felt I should undergo (one of the tests did involve a right-heart cath), I was diagnosed with exercise-induced PH. At that time, exercise-induced PH was not a treatable diagnosis. In lieu of my symptoms with climbing stairs and my inability to run without having symptoms, we decided to attempt a calcium-channel blocker. It did not help my symptoms much.

Overall, I was not feeling good and I was reaching a point where I did not want to run anymore. Several months later I was started on an oral PH medication. Within a month there was a noticeable improvement in my exercise tolerance, and I was a lot less short of breath. Climbing a flight of stairs was getting easier as well.

It has been several years now, and I continue with my medication. As part of my daily routine, I continue to exercise regularly. I am not limited in my activities, and I am forever thankful for that.

During this season of Thanksgiving, I have been reflecting on some of the things that I am thankful for. Thanks to my physician for giving making it possible for me to continue to do what I enjoy. Thank you to all the dedicated physicians, healthcare workers and researchers for trying improve the lives the patients with PH. Thank you to everyone at PHA for all their dedication, support, and education you have provided to PH patients and their families. My life has been blessed and enriched knowing you.

 

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NORD

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.