Courtney Ewert knew something in her body felt odd, but she gave it little thought until she began losing weight. “I noticed over a few weeks that my size was smaller and when I weighed myself, the change was not normal.” Originally from Chicago, both she and her sister were diagnosed with dilated cardiomyopathy as children. The inherited condition causes the heart to become enlarged and not pump blood effectively.
Even with heart disease, Courtney continued to lead a normal life “I was very active—regularly running, biking, swimming and lifting weights.” She married, moved to St. Louis and had two children. As a 31-year-old, full-time mom of a toddler and a newborn, it was difficult to make time for her own health. In addition to the weight loss, Courtney had a nagging sinus infection that sent her to a neighborhood Walgreens clinic. It was there a doctor noticed her heart rate was elevated to 170, and suggested she see her local cardiologist for a check-up.
Her cardiologist confirmed the abnormally high heart rate and, upon further testing, referred Courtney to Barnes-Jewish Hospital for advanced heart therapy. Within 24 hours of her initial visit, Gregory Ewald, MD, Washington University cardiologist and director of the advanced heart failure and cardiac transplantation program at Barnes-Jewish Hospital, diagnosed her with advanced heart failure.
Heart failure is a serious health condition that occurs when the heart cannot pump enough blood to the rest of the body. Heart failure commonly develops because of underlying conditions, like the dilated cardiomyopathy Courtney was diagnosed with as a child.
A few years ago, Courtney’s sister passed away from complications related to cardiomyopathy. “It was a crazy whirlwind,” she says. “I was scared the same thing would happen to me.”
Courtney was admitted to Barnes-Jewish Hospital in September 2016. Along with the heart failure diagnosis, Dr. Ewald and Joel Schilling, MD, Washington University cardiologist at Barnes-Jewish Hospital performed additional testing. They found her to be in critical cardiogenic shock, which takes place when the heart has been damaged so much that it is not supplying enough blood to other organs of the body.
As a result, an assistive device was implanted inside Courtney’s heart to temporarily support a failing left ventricle, and help it pump blood to the rest of her body. Due to the worsening of the cardiogenic shock, she developed failure in both ventricles. So Courtney was placed on extracorporeal membrane oxygenation, which is a temporary support device that supports both the left and right ventricle as they work to pump blood. Known as ECMO, this assistive technology also functions as a lung, providing oxygenation throughout the body. Barnes-Jewish is one of the few medical centers in the St. Louis region to offer this therapy to patients for various periods of time.
“She was resilient,” says M. Faraz Masood, MD, Washington University cardiothoracic surgeon at Barnes-Jewish Hospital, who performed all of Courtney’s procedures. “And her husband and parents supported her every step of the way.”
A week later, because of the lack of cardiac recovery, she had a left ventricular assist device (LVAD) implanted by Dr. Masood. LVADs are mechanical pumps serve as a bridge to heart transplantation, providing long-term support. These are implanted when a patient is a candidate for a heart transplant, but their condition is not yet strong enough for such a major surgery. With the LVAD, Courtney was able to be discharged from the hospital, recover and become a patient eligible for transplantation.
Finally in March 2017, Courtney was able to receive a heart transplant at Barnes-Jewish. “The doctors and nurses were phenomenal,” she says, “very caring and nurturing, particularly the one-on-one care. I never felt like I was alone. Every day a doctor was at my bedside, always checking on me and keeping my family informed.”
The procedure and recovery went smoothly. Says Courtney, “Post-op recovery came naturally for me. I was in pretty good shape prior to the surgery so I just had to regain muscle mass and rebuild my body.”
However as someone who is physically active, she is getting accustomed to having a denervated heart, which is typical with any heart transplant. Unlike her old heart, the new organ is not connected to her brain like before. It relies on internal electrical impulses in the right atrium, generated by circulating hormones. This causes a slower response than if the nerve connections to the brain were still intact and makes it critical for Courtney to warm up and cool down with any vigorous activity.
“With a new heart, the hardest thing has been getting it ready to move. I can’t just get up and jump around anymore. I can go for a run, but I am getting used to warming up first.”
An added bonus of the transplant is that the cardiomyopathy Courtney had earlier in life was removed with the old heart.
Says Courtney, “I am free from heart disease for the first time in my life.” Next month, Courtney and her family will celebrate the two-year anniversary of her transplant. In addition to enjoying her role as a full-time mom, she has run a 5k race with one big goal in mind. “I have a long way to go with training, but my dream is to compete in the Chicago Triathlon next year.”
When asked to offer advice for heart disease prevention, Courtney says, “Be smart and get checked out. Don’t risk your life—listen to your body. People tell me ‘You’re so young to go through all of this’, but I say it can happen to anyone.”