Whitney Gaspar has long known that she didn't have much endurance.
When she was in secondary school, Gaspar said she ran a "slow mile" in gym class of 14 to 15 minutes and "avoided stuff (that required) a lot of endurance."
Then in December 1999, she caught the flu and couldn't walk four or five steps without her lips turning blue, said Gaspar, 36, of Plainfield.
Doctors misdiagnosed Gaspar as having asthma. In February 2000, she finally got the correct diagnosis: She suffered from pulmonary hypertension.
A person with pulmonary hypertension has arteries leading to the lungs that have high blood pressure, causing the arteries to narrow and leaving less room for blood to flow. It can eventually lead to heart failure and, in some cases, death, according to the World Health Organization. About 500 to 1,000 cases are diagnosed each year in the United States, according to the American Heart Association.
A new study led by a University of Chicago Medicine professor has found that many people who suffer from pulmonary hypertension like Gaspar are misdiagnosed.
"I think we were not surprised by the general results," said Dr. Mardi Gomberg-Maitland, a cardiologist and director of the pulmonary hypertension program at the U. of C. Medicine. "We're seeing patients started on medications inappropriately ... Patients are often misclassified, and given the wrong diagnosis."
Gomberg-Maitland is the senior author of a study titled "The Referral of Patients With Pulmonary Hypertension Diagnoses to Tertiary Pulmonary Hypertension Centers" that was published online April 8 in the JAMA Internal Medicine journal.
The study examined the medical histories of 140 patients who were ultimately referred in 2010 and 2011 to pulmonary hypertension centers at the U. of C., the University of Michigan and the Baylor College of Medicine in Houston. The researchers found that many of the patients had been misdiagnosed before they received the correct diagnosis of pulmonary hypertension.
"We're hoping that the paper shows that we need to improve educational efforts, and that we're a team. We want referrals early so that patients can live longer and feel better," Gomberg-Maitland said.
She recommends that doctors use catheterization, and calls right-heart catheterization "critical for the diagnosis of pulmonary hypertension." Catheterization involves inserting a tube, known as a catheter, into a vein in the patient's neck or groin.
"The catheter is then threaded into your right ventricle and pulmonary artery," according to the Mayo Clinic's website. "Right-heart catheterization allows your doctor to directly measure the pressure in the main pulmonary arteries and right ventricle. It's also used to see what effect different medications may have on your pulmonary hypertension."
Gomberg-Maitland said she hopes "that the study alerts doctors that we're underusing catheterization."
"We're not doing all of the recommended procedures," she added. "If the recommended procedures are done, we think that patients would be given appropriate diagnoses and hopefully lead to appropriate care. If we don't do appropriate testing and don't make the right diagnosis, then that's where we're running into trouble."
Dr. Kim Kerr, clinical professor of medicine at the University of California at San Diego, called the study "well done." Kerr was not involved in the study.
The study "provides evidence that confirms the concerns (that) those of us who treat pulmonary hypertension have had for a long time," Kerr said. "Patients with and without pulmonary hypertension are being incompletely evaluated, misdiagnosed and not properly treated by community physicians. This supports the concept that patients with suspected pulmonary hypertension should be referred to centers with expertise in this disease for evaluation and co-management of their disease."
Gaspar, who was not a part of the study, now has a pump implanted beneath her skin that is regularly filled with the medication Remodulin through a needle to treat her pulmonary hypertension.
She adopted a daughter two years after her diagnosis. Although she still becomes winded when she climbs stairs, she leads what she calls "a relatively normal life."
"I feel blessed to be upright," Gaspar said.