Shortly after her diagnosis, Mary Beth Schumacher went online to learn all she could about pulmonary hypertension.
The lesson left her gasping.
"When you get online and you see that life expectancy is one or two years from the time of diagnosis, that's discouraging," Schumacher said. "The more I read online, the more depressed I got."
High blood pressure in the lungs characterizes pulmonary hypertension, an incurable, serious disorder that causes the heart to work harder to pump blood.
"Because the heart has to work harder to pump the blood through the lungs, the right side of the heart becomes enlarged and eventually fails," said Traci Stewart, a pulmonary hypertension nurse specialist at the University of Iowa Hospitals and Clinics.
Schumacher's doctors originally blamed her shortness of breath and fatigue on asthma, exacerbated by smoking.
"They gave me inhalers," said the 47-year-old Dubuque resident, who quit smoking. "They did no good for me."
Pulmonary hypertension's symptoms
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Although there are more than 100,000 Americans known to suffer from pulmonary hypertension, there could be thousands of others whose symptoms have yet to be diagnosed. Many people could have pulmonary hypertension without knowing it or are misdiagnosed with illnesses such as asthma or bronchitis, delaying proper treatment. Early symptoms can often be attributed to those of many other conditions. Symptoms of pulmonary hypertension can include: * Chest pain * Breathlessness * Low energy * Dizziness and fainting * Swollen ankles and legs * Bluish lips and skin -- Source: Pulmonary Hypertension Association |
Doctors also attributed Schumacher's shortness of breath and swelling to a heart problem and performed open-heart surgery in January 2006. Schumacher struggled with complications following the surgery.
When her shortness of breath worsened, doctors referred Schumacher to a lung specialist in Iowa City.
A battery of invasive tests -- including a right-heart catheterization -- ultimately determined the cause of Schumacher's shortness of breath.
"It was clear it was pulmonary hypertension," she said.
Stewart said pulmonary hypertension comes in five varieties, including pulmonary arterial hypertension, a disorder associated with connective tissue diseases (such as scleroderma or lupus), congenital heart defects, liver disease and certain toxins.
Other forms of pulmonary hypertension are associated with heart valve disease, chronic obstructive pulmonary disease, blood clots and the compression of blood vessels.
"For those who have pulmonary arterial hypertension, there is an imbalance in the chemicals that constrict and dilate the pulmonary arteries and there are medications that can help correct this chemical imbalance," Stewart said. "For many of the other conditions causing pulmonary hypertension, the best known treatment is often to treat the underlying cause of the pulmonary hypertension."
More than a year after her diagnosis and initial distress, Schumacher considers herself relatively fortunate.
"I am very, very lucky -- I caught it at an early stage," she said. "Other people (with pulmonary hypertension) can't walk a very short distance. I take an oral medication and I use oxygen at night so my heart doesn't have to work so hard. The disease is slowing down with the medication I am taking."
Pulmonary hypertension has forced Schumacher to alter her lifestyle.
"I do what I can do," she said. "I am an avid gardener, but the humidity and the heat was too much for me."
Schumacher still struggles for breath and tires easily. Standing for too long prompts her legs to swell.
"My mornings are the best, my afternoons are OK and my evenings are OK, too," she said. "Some days I feel sick, and some days I don't."
Pulmonary Hypertension - Mary Beth Schumacher, who suffers from Pulmonary Hypertension, explains how she paces herself throughout the day.
