Doctors Provide Lifesaving Care for Woman After a Rare Heart condition

September 20, 2021

When 69-year-old Alice Jurist developed symptoms suggesting COVID-19, including fever, fatigue and difficulty breathing, she and her husband, David, faced a seemingly straightforward choice: Either seek coronavirus testing a few minutes away from their Chester, New Jersey, home, or drive nearly an hour to Hackensack University Medical Center.

But the couple’s deep respect for the hospital, to which they’ve devoted enormous time and resources over the last four decades, trumped convenience. Alice’s COVID-19 test turned out negative, but perceptive Hackensack clinicians determined Alice had been stricken by a rare cardiovascular condition.

The mother and grandmother’s COVID-like symptoms in May 2020 were confusingly similar—at least at first—to a rapidly progressive and usually fatal form of myocarditis, an inflammation of the heart muscle that’s caused by a different virus. Tipped off by her low blood pressure, cardiac and critical care specialists intervened quickly and decisively with state-of-the-art treatments as Alice lost all normal heart rhythm.

“We convinced her to stay in the hospital and do a workup, but her case was so rapidly progressive that she went from being on oral medications to mechanical life support within days,” says heart failure specialist Kanika Mody, M.D.

David and Alice quickly realized they had made the right choice. “If we had gone to the COVID-19 testing site five minutes away from our home, the test would have been negative and we would have stayed home another day or two, which would have made all the difference,” David says. “If she were not in that hospital, she wouldn’t have made it.”

Adds Alice, now 70: “I can’t begin to tell you how one decision changed everything.”

Dramatic Downturn

Married for 36 years and the parents of seven, the Jurists’ zealous involvement with Hackensack traces back to both heartbreak and triumph. After their daughter, Eileen, was successfully treated as a teenager for Hodgkin’s lymphoma in the 1980s, David and Alice plunged into helping children and their families living with cancer and blood disorders.

For more than three decades, the Jurists led the Tomorrows Children’s Fund at Hackensack, raising close to $50 million and hosting carnival-like picnics each summer at their home for hundreds of sick children and their family members.

Tragically, Eileen died in 2016 after battling a third cancer. The couple established the Eileen Fund in her honor, which supports research advancing precision medicine treatment targeting underlying genetic drivers of disease. The David and Alice Jurist Institute for Research is home to research, development and innovation on the hospital campus.

David was like any loving spouse as he rushed to Hackensack in the middle of the night after learning doctors needed to shock Alice’s heart dozens of times to keep her alive. Alice was already under the care of Robert Berkowitz, M.D., founder and medical director of the Heart Failure Program at Hackensack, and had a pacemaker implanted eight years before to treat a left bundle branch block, a problem with the heart’s electrical signals.

Now, cardiac specialists tapped a cutting-edge heart pump known as the Impella 5.5 with SmartAssist as Alice’s condition deteriorated, implanting it in her left ventricle with a catheter tube snaked through an artery. In 2019, Hackensack became the first U.S. hospital to successfully perform procedures using this short-term, minimally invasive device, which treats heart conditions that leave the organ unable to pump adequately.

Despite the tiny but mighty heart pump, however, Alice was crashing. She knew it, but wouldn’t give up.

“Before I went unconscious, I said, ‘Don’t let me die.’ I was fighting and was going to keep fighting,” Alice recalls. “I had my family, and that’s where I wanted to be.”

Bold Treatment

Cardiothoracic surgeon Mark Anderson, M.D., chief of Cardiac Surgery, recalls how Alice’s stealthy heart muscle infection, known as giant cell myocarditis, required nimble clinical judgment.

“She was clearly going in the wrong direction despite pretty substantial support, suggesting a broader, more diffuse problem that was harder to take care of,” he explains.

In a bold effort to save her, team members that included critical care specialists Raghad Said, M.D., and Eugene Bunnell, M.D., connected Alice to life support known as ECMO, or extracorporeal membrane oxygenation. This heart-lung machine would sustain Alice’s vital organs temporarily, though doctors recognized she would ultimately die unless she received a new heart.

“Yes, we have the technology. Yes, we were aggressive,” Dr. Anderson says. “But it really takes a team approach to figure out what’s going on and what the next steps should be. This case was a very good demonstration of how well our multidisciplinary heart failure-shock team functions.”

Doctors also knew Alice would need to go elsewhere to continue treatment. Though Hackensack plans to soon perform heart transplants, Alice would need to undergo hers at a New York hospital. And there was only a narrow window for that to happen, since ECMO typically works short-term as a “bridge to a next step,” Dr. Mody notes.

“During all this time, Hackensack Meridian Health’s CEO, Bob Garrett, was there for us with anything we needed,” Alice says gratefully. “His friendship over the last 35 years has been unequaled.”

Future in Focus 

Alice received a new heart in New York just days after her transfer. Her on-the-go temperament has been challenged by a rough and long recovery involving numerous medications, periodic hospital visits and ongoing monitoring for possible rejection of her new heart.

Two of the Jurists’ adult sons have hunkered down with their parents as the pandemic continues, helping care for Alice at home as she regains strength. The ordeal further solidified the large family’s bond, and the couple is cautiously starting to peer at a future beyond her recovery.

“There’s nothing I want in my life other than my wife being OK,” David says. “Any things I might have wanted or looked forward to, this has shown me they don’t matter.”

Alice, also the founder and CEO of a design, print, mailing, fulfillment and promotions company, is eager to work, travel and help others again.

“I’m not going to put things off. I cannot wait to get out there again and start living, whether starting an event for our charity, going on a vacation or just being together and sitting on a beach,” she says. “We have a lot of celebrating to do.”

Next Steps & Resources:

The material provided through HealthU is intended to be used as general information only and should not replace the advice of your physician. Always consult your physician for individual care.