Pulmonary Hypertension (PH) is a rare blood disorder of the lung in which the pressure in the pulmonary artery -- the blood vessel that leads from the heart to the lungs -- rises above normal levels and may become life threatening. It is a disease that affects people of all ages and ethnic backgrounds. It can occur independently or in association with other diseases such as heart and lung disease, as well as connective tissue diseases.
Payne was diagnosed with PH in August 2009, nearly a year after a misdiagnosis of asthma. Payne, who is currently a civil engineer at Thyssenkrupp, said she was working on a special project in Virginia. On her daily one-mile walk to work, she became short of breath after breathing in cold air. “It just kept getting worse and worse,” she said. “It was right after that when I was diagnosed with asthma.”
After moving to Mobile to begin work at the new plant, Payne’s asthma medications were still not working. After a few months, she was sent to a private physician in Mobile, and was correctly diagnosed with PH. She ultimately started on treatment, but her PH still seemed to be getting worse.
It was unclear what had caused Payne’s PH. “Finally, a rheumatologist said I had scleroderma – a connective tissue disease that can cause PH,” Payne said. “My body was basically fighting with itself.”
Payne was referred to Dr. Karen A. Fagan, medical director of the University of South Alabama Pulmonary Hypertension Center. It was then that her treatment program was kicked up a notch. A Groshong catheter – a type of tunneled intravenous catheter – was inserted under her clavicle on July 28, 2010. Later that day, she began treatment with an IV medication that is continuously infused – 24 hours a day for the rest of her life or until better treatments, including lung transplants, are available.
“If left untreated, the severest types of PH have a poor prognosis with severely shortened life expectancy and decreased ability to perform the functions of everyday life,” Dr. Fagan said. “We know that our current treatments are improving and extending lives, but unfortunately PH remains a progressive disease. However, significant advances have been made in both understanding the cause of the disease and in developing new treatments.”
The University of South Alabama Pulmonary Hypertension Center provides care for patients with PH and educates patients, families, and the community about the disease. Its mission is to search for better treatments and ultimately a cure for PH through research at the USA Center for Lung Biology and clinical trials through the USA Pulmonary Hypertension Center. “USA has played a very significant role in research in this disease,” Dr. Fagan said. “Major contributions from members of the faculty at USA over the past 20 years have led the way for development of almost all of the available treatments for PH that currently exist.”
Currently, Payne is on a regular exercise program and takes five different medications daily. She was visiting Dr. Fagan once a month for follow-up. “Now, I visit her about once a quarter,” Payne said. “She is absolutely amazing, and I learned a lot about this disease through her. Her control and knowledge about research is astounding.”
“There are so many people that are misdiagnosed, and it is important to promote awareness of PH,” Payne said. “Education is power. The more information we get out there, the closer we can get to beating this.”
Payne was upset when she found out her PH diagnosis because she had always taken care of herself. “I was never scared, though, because I relied on my faith,” she said. “That’s what got me through this.”
“The more problems I had, the more motivated I became,” Payne said. “I won’t let this beat me. I am fighting the disease, and I am winning.”
