Sweating profusely and feeling light-headed, 32-year-old Terrell Jordan sat at the stop light for a moment before his wife, Amy, had to take the wheel.

“I just felt really weird,” he recalls.

Amy drove straight to the nearest emergency room, at St. Luke’s Hospital in Cedar Rapids, Iowa, where tests showed evidence of heart disease.

The clues included an elevated level of troponin—an enzyme found in the bloodstream when the heart is injured—and a speckled appearance of the heart, suggesting a possible infiltrative cardiomyopathy (a heart muscle disorder that results in ineffective pumping of blood).

Doctors started Jordan on heart failure medications and transferred him to the multidisciplinary heart specialists at University of Iowa Hospitals and Clinics.

There, experts in cardiomyopathy and infectious diseases began assessing the cause of his disease and determining the best treatment. The team included heart failure specialists Barry Cabuay, MD, Frances Johnson, MD, and others.

UI’s cardiomyopathy team often treats patients with rare and life-threatening heart conditions that most physicians will never encounter.

“For this reason, we use our aggregate experience and knowledge to develop plans,” Johnson explains. “Terrell had a constellation of findings that were highly suspicious for a rare disorder called giant cell myocarditis.”

Giant cell myocarditis typically affects younger people in otherwise good health, so the fact that Jordan was young and physically fit had no bearing on the diagnosis.

Although UI specialists rarely need a tissue sample from the heart to make a definitive diagnosis, Jordan was an exception.

“As we suspected, there was massive inflammation and tissue destruction but some of the hallmark pathological features of giant cell myocarditis were absent,” Cabuay explains. “To be safe, we decided to begin treatment with immunosuppressive drugs (standard therapy for the condition) while the sample underwent review.”

Despite this treatment, Jordan’s condition worsened and he became a high-priority patient for heart transplant.

Meanwhile, in case Jordan’s heart became so weak it couldn’t withstand a surgical procedure without a temporary boost, the adult ECMO (extracorporeal membrane oxygenation) team remained on standby.

Once Giant cell myocarditis was confirmed, everything moved quickly.

Remarkably, a donor heart became available on Nov. 19, 2006, only five days after he had been placed on the transplant list. Within a few hours, the procedure was over and Jordan was in the first phases of his re-invigorated life with a new heart.

Support came from all directions, including dozens of family members and friends who gathered, sang, and prayed. It didn’t hurt that Terrell is the youngest of 13 children born to a Baptist minister. In fact, Terrell is a trained minister as well.

“Everyone there at the hospital was awesome,” he says. “I couldn’t have had a better care team.”

For his part, Jordan expects to resume working after doctors give him the go-ahead. Meanwhile, he enjoys spending time with his five children and plans to resume the active lifestyle he once knew, including pickup basketball.

Meanwhile, Jordan might become one of the first patients at UI Hospitals and Clinics to benefit from a blood test that can help predict graft rejection.

“It’s called AlloMap and we hope to have it available soon,” Johnson says. “AlloMap scores the activity of 20 gene products found in white blood cells and is an accurate predictor of when patients are rejecting.”

For more information about the cardiomyopathy services at UI Hospitals and Clinics, patients and families should contact the Cardiomyopathy Treatment Program at 319-356-1028.

For consultation or referral, physicians should contact UI Consult.

Giant cell myocarditis

• Rare, extremely serious inflammation of the heart
• Typically affects younger people in good health
• 70 percent of patients die or undergo heart transplant within a year

—Michael Sondergard

A Comfortable Place
In the sanctuary of his father’s Baptist church, Terrell Jordan (second from left) joins his wife, Amy, and children, from left: Braden, Bryce, Terrell Jr., and Toianna. A fifth child, Jontay, was not available.