Keeping up

UI Pulmonary Hypertension Center has the latest therapy for rare heart and lung disease

Tara Meyer had begun to notice a change in her physical fitness. Her energy seemed low, and simple tasks like climbing stairs and doing laundry left her out of breath. But the tipping point came in the summer of 2015, when it started limiting the amount of time she could enjoy with her grandchildren.

“They’re ages 13 on down to 7, and they’re pretty active,” says Tara, 51 of Waterloo, Iowa. “I couldn’t keep up with them. So I called my doctor.”

In October 2015, her doctor recommended an echocardiogram, a test that uses sound waves to create pictures of the heart. It showed a buildup of fluid around her heart.

“That was scary,” Tara says. “They wouldn’t let me leave the hospital.”

After three days of tests, she was diagnosed with pulmonary arterial hypertension (PAH). Also sometimes referred to more simply as pulmonary hypertension, PAH is a rare disease that causes high blood pressure in the arteries that provide blood to the lungs.

PAH affects about one in 3 million people and is not curable. It causes breathlessness, chest pains, loss of energy, and swelling. Left untreated, it can lead to heart failure or death.

Some people have a higher risk of getting PAH, such as those with lupus, scleroderma, lung disease, liver disease, or congenital heart disease. It can also run in families. Tara had lost her brother to PAH six years earlier.

Tara’s doctor made plans to send her to University of Iowa Hospitals & Clinics, which has the only pulmonary hypertension program in Iowa designated as a Center of Comprehensive Care by the Pulmonary Hypertension Association—the highest designation. But Tara’s first visit to the UI would come sooner than expected.

Her doctor had ordered a biopsy to investigate what appeared to be a growth in her lungs. During that procedure, the fluid around Tara’s heart was drained, which led to complications.

“It raised my heart rate, and they couldn’t get it to slow down,” Tara says.

That night she was transferred to the Cardiovascular Intensive Care Unit at UI Hospitals & Clinics, where she met cardiologist Linda Cadaret, MD, clinical associate professor of internal medicine and director of the UI Pulmonary Hypertension Center.

“Tara was very, very sick when she came in,” says Cadaret. “In the first 24 hours, I had to come up with some life-altering ideas with her. We got to know each other pretty quickly.”

After Tara was stabilized, Cadaret and her team worked to come up with a treatment plan, which included rehabilitation to get Tara’s lungs functioning as well as possible.

“I did 36 sessions of rehab,” Tara says. “When I started, I could do about a half a mile on the treadmill. By the time I was done, I was doing two miles on the treadmill and two miles on the bicycle.”

Her condition had improved enough that by the spring of 2016 she was able to begin participating in a clinical trial of a new drug for PAH.

“It seems to be helping me,” Tara says. “I have a lot more energy, and I’m not winded like I was.”

As one of 41 Centers of Comprehensive Care in the nation, the UI Pulmonary Hypertension Center offers every treatment option available, including many that have only recently been developed. 

“We have more treatments than ever before,” Cadaret says. “We have every FDA-approved advanced therapy for pulmonary hypertension, and we have clinical trials of new therapies, like the one Tara is on. Clinical trials offer us the ability to access the latest technologies and drugs that aren’t available on the market.”

With a disease that is so rare and life-threatening, awareness and suspicion are crucial. The sooner PAH is diagnosed, the more effectively it can be treated.

“It usually takes two years to diagnose after a person is first short of breath, because it’s a diagnosis of exclusion,” Cadaret says. “We have to rule out all of the other causes of shortness of breath.”

For many people, the trip to Iowa City can be intimidating, but Cadaret wants anyone with worries about pulmonary hypertension to know that they will receive not just the best treatments, but also compassionate care.

“We’re accessible and we’re kind,” she says. “The patient is our first priority.”

Tara agrees. With more energy to devote to her grandchildren again, she fully understands how important it was for her to heed the signs her body was showing.

“Get on it and get yourself checked out before it gets too bad,” she says. “They have a good team in Iowa City. They saved my life.”