“Gardens are not made by singing ‘Oh, how beautiful’ and sitting in the shade,” writer Rudyard Kipling said. You would get no argument from Barbara Schewe about that. With a huge vegetable garden and 13 flowerbeds, she rarely has a chance to put her feet up.
“I love to garden and am outside all summer long,” the 72-year-old Greenville resident said. Barbara’s green thumb is impressive by any measure, but especially so when you consider she’s living with pulmonary arterial hypertension, a type of high blood pressure that affects the arteries in the lungs and the right side of the heart.
Pulmonary Arterial Hypertension Cause Difficult to Determine
“When there are changes in the pulmonary blood vessels, that pressure can rise and doesn’t allow the right side of your heart to pump blood through the lungs and pick up oxygen as efficiently as it should,” said Kenneth Presberg, MD, pulmonologist and Medical College of Wisconsin faculty member. “People will feel short of breath, and when it gets more severe, some people may faint with exertion because the brain is not getting enough blood flow or oxygen.”
Pulmonary hypertension is categorized in five groups based on various causes and associated diseases and conditions, ranging from sleep apnea to lupus to sickle cell disease. Barbara’s condition — pulmonary arterial hypertension — falls into Group 1. Possible causes include liver disease, congenital heart disease, HIV and scleroderma. Barbara’s case is idiopathic, meaning the cause is not able to be determined.
Pulmonary Hypertension Expanded Treatment and Therapy Options
When she was first diagnosed at Froedtert Hospital in 2006, Barbara was dumbfounded.
“I was angry and felt sorry for myself,” Barbara said. “Finally, I realized I had to accept what I had been dealt. My goal now is to do whatever I can to the best of my ability.”
Initially, Barbara was treated with oral medications. Nonetheless, her disease progressed. Her treatment expanded, though, when she came under the care of Dr. Presberg with the Froedtert & MCW Pulmonary Hypertension Program — one of three adult programs in Wisconsin accredited as a Pulmonary Hypertension Care Center. Dr. Presberg added an inhaled pulmonary vasodilator drug to her regimen. Delivered via an inhaler several times a day, the medication acts to expand arteries and increase blood flow. He later recommended a more potent subcutaneous infusion pulmonary vasodilator instead of the inhaled agent.
“It was a pump about the size of a deck of cards that led to a site on my abdomen,” Barbara said. “I had it for over three years, but it was painful each time the site was changed.”
As Barbara’s condition was too severe to allow her to rely solely on oral and inhaled medication, Dr. Presberg continued to recommend infusion pulmonary vasodilator treatment, but now with IV therapy. This would be less painful than her subcutaneous method but would require more attention.
“Fortunately for Barbara, IV medication allowed her to improve,” Dr. Presberg said. “We are grateful for that. Some lung diseases do not respond as well. In the 1980s, a person with this disease would have only a 50% three-year survival rate. That’s worse than some cancers. Fortunately, we have made progress and survival has improved greatly.”
Specialized Care Team Eases Diagnosis
For patients like Barbara, the Pulmonary Hypertension Program provides a wealth of expertise from a multidisciplinary team of pulmonologists, cardiologists and rheumatologists offering an array of proven treatment options.
“Dedicated nurses and staff in the outpatient center also help deliver state-of-the-art, comprehensive care,” Dr. Presberg said.
As the Pulmonary Hypertension Program coordinator, Tina Stiyer, BSN, RN, worked with Barbara as she proactively addressed her illness.
“Barbara is one of our go-getters,” Tina said. “Her goal has been to remain active — to garden, exercise and go places — and not feel hindered. And she has done that, even though we have added two more drugs since her start in the program.”
Barbara begins days with a workout at the Y and never lets up.
“The only challenge I have is walking up inclines,” she said. “That makes me short of breath. Stairs can be an issue too. But, people have said to me, ‘You don’t look sick; you look perfectly healthy.’ That’s my intent. I don’t want people to feel sorry for me. I’m trying to live the best life I can.”
Experts in the Froedtert & MCW Pulmonary Hypertension Program create individualized patient treatment plans. For more information, visit froedtert.com/pulmonary-hypertension.
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