The Pulmonary Hypertension Association recently reached out to running enthusiast and pulmonary hypertension patient Roseanne Huber from Florida to share her insightful story of taking control of her condition. Huber was diagnosed with the life-threatening disease in 2006 and she had feared her life would change dramatically, as PH is known to lead to death in less than 3 years. Fortunately, seeking and receiving an early diagnosis made all the difference between an extremely positive outcome and allowing the disease to define her active lifestyle.
Huber shares in a PH Association Blog Article that it was only when she was 40 years old that she decided to start exercising. This desire to get back in shape and restore her health and fitness came from discovering her cholesterol was elevated and observing that many of her neighbors had an active lifestyle. She started small with running, and grew to love it over the course of a few months until she was able to run a 5K. She continued her training for a year until she started noticing an incapacitating shortness of breath and a drastic decline in her endurance.
Huber went to see a pulmonologist, who told her she was fine. She took a short break from running as she moved from Florida to Rhode Island, but when she returned to her running regimen, she experienced a few more alarming symptoms. She had to stop often in the middle of her run because of severe leg fatigue, tachycardia, and shortness of breath. She felt there was still something wrong, so she consulted with her rheumatologist, Dr. Pasha Sarraf, at Massachusetts General Hospital, who referred her to a PH specialist.
Dr. Aaron Waxman at Brigham & Women’s Hospital had Huber undergo an invasive cardiopulmonary exercise test that involved a catheter inserted into the right side of the heart, along with nuclear imaging. From the findings, Dr. Waxman was able to accurately diagnose Huber with exercise-induced PH, which unfortunately was not responsive to a conservative regimen of calcium channel blockers. Soon, Huber began to experience her symptoms during “normal” tasks such as vacuuming and carrying heavy items, and would even feel lightheaded. When she returned to Dr. Waxman’s clinic, he recommended she take Bosentan, which was then the only oral treatment approved for PH. In just 2 weeks of treatment, Huber was able to resume running without the disruptive symptoms of PH.
Since then, Huber has been a PH advocate and active member of the PHA. She continues to train and race, frequently joining PH fundraising fun runs or running wearing a PHA shirt. She feels extremely lucky and grateful to Dr. Sarraf for suspecting PH and pointing her in the direction of a specialist. Getting a timely diagnosis and starting her treatment early made a world of difference to how the disease would have progressed, which is why Huber hopes more people will stop ignoring the signs of PH and get help as soon as possible.
November is National Pulmonary Hypertension Awareness Month, and the PHA is encouraging those interested to get involved in their Early Diagnosis Campaign, which works to address diagnostic delays with the end goal of optimized care and disease management. To learn more about the importance of early diagnosis and where to get tested, visit www.SometimesItsPH.org.