17-Year Grove City Survivor of Deadly Lung Disease Fights Back as a Pulmonary Hypertension Association Volunteer Advocate and Fundraiser

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Seventeen years after learning she has pulmonary hypertension (PH) and that she would likely die within five years, Merle Reeseman of Grove City lives a full and purposeful life.

Her shirt reads “I’m a little SOB — That’s short of breath. Ask me why.”

Seventeen years after learning she has pulmonary hypertension (PH) and that she would likely die within five years, Merle Reeseman of Grove City lives a full and purposeful life. Tethered to portable oxygen, she spends her days answering phone calls and responding to emails from newly diagnosed patients, leading support groups, and raising funds for Pulmonary Hypertension Association (PHA) programs to help people with PH live longer and better.

PH is a progressively debilitating disease resulting in high blood pressure of the lungs due to narrowing of the pulmonary arteries. PH forces the right side of the heart to pump so hard to move blood into the lungs that it can lead to heart failure and death. Symptoms are non-specific and include shortness of breath, fatigue and chest pain and consequently people with the disease go months, sometimes years, believing they have something other than PH. Most people living with PH are ultimately diagnosed with an advanced form of the disease. The disease affects adults and children. While there are no pediatric treatments, with early and accurate diagnosis, quality care and appropriate treatments now available for two forms of adult PH — pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) — can extend and improve the quality of life for many people living with the disease.

Reeseman will share her story Saturday, Saturday, Sept. 9, at PHA on the Road in Pittsburgh, Pa. The free day-long education, networking and support event is open to people living with PH and associated conditions, as well as their loved ones. As the nation’s leading PH organization, PHA delivers integrated patient and health care professional programs that advocate for patients, catalyze research for a cure, empower PH patients and caregivers, and enhance patient care.

Empty nesters with four grown children, Reeseman and her husband, Tom, had big plans before doctors diagnosed her with the disease. Instead, she was confronted with the death of her father, deep despair over the 9-11 terrorist attacks, and a health condition that left her struggling to breathe most of the time. Convinced that her exhaustion was emotional fatigue, it was only after her daughter insisted that she make an appointment with her family doctor that she learned she had PH. The cardiologist she visited on her family doctor’s recommendation had just returned from a seminar on the disease. He sent her to the Cleveland Clinic Foundation where she said a right heart catheterization confirmed the diagnosis. Worried about the high cost of Flolan, the only available treatment at the time, Reeseman said she agreed to take part in a few drug trials. Weeks later, she had become so ill that doctors said she might have only weeks to live. Reeseman said she will always be grateful to a nurse who insisted she get on Flolan and deal with the cost later. Reeseman said she and her husband made the most difficult decision of their lives. To qualify for assistance to pay for the care and treatment she needed to stay alive, they legally separated.

With every aspect of her life impacted negatively by PH, Reeseman was determined to fight back. She joined PHA, through which she became a volunteer patient advocate, support group leader and fundraising event leader. At its 9th International PH Conference and Scientific Sessions in 2010, PHA named Reeseman Outstanding PH Citizen.

In addition to hearing Reeseman’s story, PHA on the Road participants will take part in interactive presentations, educational sessions and networking opportunities. PHA on the Road provides participants with complimentary breakfast, lunch, childcare and parking. The forum takes place 8 a.m. to 5 p.m. at Hyatt Regency Pittsburgh International Airport 1111 Airport Blvd., Pittsburgh, PA. To register for the event and to learn more, please go to https://phassociation.org/ontheroad/pittsburgh/registration.

About the Pulmonary Hypertension Association

Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit http://www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at http://www.facebook.com/PulmonaryHypertensionAssociation.

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Jordan Jennings
@PHAssociation
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