Lasting impressions: Zamanian on braving pulmonary hypertension

Norbert von der Groeben Roham Zamanian

Roham Zamanian describes one of his patients, a 21-year-old woman, as being “absolutely heroic.”

Every doctor carries at least one patient in his or her head—a memory of a difficult case, perhaps, or of a tragic outcome. And sometimes there’s a patient who simply touches the heart. This is one in a series about the patients they carry.

It’s sometimes misdiagnosed as severe asthma. Or a seizure disorder. Whatever the guise, pulmonary hypertension, or high blood pressure in the pulmonary arteries that supply blood to the lungs, is deadly.

“It’s a disease of the young that kills more than 60 percent of the people it afflicts within the first five years,” Roham Zamanian, MD, explained. “It particularly affects women of child-bearing age, in their 20s to 40s.”

The first PH patient Zamanian encountered was a young woman in the intensive care unit of the teaching hospital at the University of California-Irvine, where he had accepted a residency after completing medical school.

Zamanian, now director of the adult pulmonary hypertension clinical service at Stanford Hospital & Clinics, had decided to become a doctor during a grueling, six-month escape from his native Iran, traveling in a caravan through Kurdish regions of Iran, Iraq and Turkey. “It was an awakening experience for an 11-year-old,” he recalled. “We had to cross rugged terrain and high mountains in winter, and an Iranian neurosurgeon who was with us helped people who were sick, from village to village. He had a healing touch and seemed to care for people.”

When Zamanian ultimately started his residency in the UC-Irvine ICU, in the late 1990s, there was only one drug approved for treating PH—Flolan, a highly toxic infusion delivered 24 hours a day, seven days a week. His patient, a 35-year-old pregnant woman, didn’t want to give up on her child, and Zamanian stood by her through the many months she spent in the ICU. “Pregnancy is a killer for women with this condition because of the stress on the heart,” he said. But his patient and her baby survived, thanks to a “phenomenal” team effort by residents and nurses.

Zamanian, who is also assistant professor of medicine at the School of Medicine, has a photo on his office wall of Dan, a 21-year-old who was not so fortunate. He still keeps in touch with Dan’s father. And he often glances at the young man’s photo, as he analyzes the results of clinical trials in which 70 percent of patients are surviving for more than 10 years—eclipsing the 37 percent survival rate over five years that was the norm in the 1990s.

Zamanian’s star patient these days is a 21-year-old woman who had what he thought was a 70 percent chance of dying when he met her four years ago. “Because she was getting short of breath, she was told she had asthma,” he said. “Then she had two episodes where she passed out, and she was told she had a seizure disorder.”

When the patient finally was referred to Zamanian, he diagnosed her with stage-four heart failure from PH, near death. He started her on infusion of Flolan, the gold standard of PH treatment, which helps to dilate blood vessels and keep blood pressure down. Today the drug is delivered via a surgically implanted catheter in her neck that winds under her skin, from her shoulder, into a vein, and finally into her heart.

At an age when many of his patients resist anything that makes them stand out, Zamanian said this young woman is “absolutely heroic.” She knows there is not yet a cure for PH, but she has committed to the rigorous daily treatment.

“She’s a funny bird, which is why I love her,” Zamanian added. “She’s tough-skinned and pretends that she doesn’t take anything from anyone. But she understands how ill she is, and she has come to terms with wearing a big pump on her belt.”

The $100,000-a-year drug therapy has turned his patient’s life around, Zamanian said. “She can do most things without feeling winded, and she’s really into taking care of animals.” When Zamanian had to tell the young woman she could no longer ride her horse because of the danger of falling, she was heart-broken at first, then agreed to the restriction. “She tells me she doesn’t ride anymore.” He paused. “But I bet she does.”

For the past three years, Zamanian’s patient and her parents have participated in the annual campus Race Against PH that is sponsored by the hospital’s Vera Moulton Wall Center for Pulmonary Vascular Disease. “With 1,500 people walking, strolling and jogging, it’s one of the largest patient-focused PH events in the U.S.,” he noted. And his star patient is always out in front—“with a permanent catheter in her neck, pumping medication to her heart.” He smiled. “Absolutely heroic.”

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