A teenager gets a second chance at life thanks to Westchester Medical Center’s Heart Transplant Program.
By Stephanie Davis, RN, MS
In late 2015, East Rockaway resident Taylor Rose Clarke was, in her words, in “perfect health” when she began experiencing increasing levels of weakness and fatigue.
As a college sophomore, she initially thought her symptoms were due to the stress and anxiety of school or perhaps even the poor eating habits associated with college life. But after undergoing multiple tests at a Long Island hospital, Taylor discovered something unimaginable: She was suffering from advanced heart failure.
Having assessed Taylor’s situation, the referring hospital’s head of cardiac surgery called Alan Gass, MD, Medical Director of Advanced Cardiac Failure and Transplant at Westchester Medical Center (WMC), the flagship of the Westchester Medical Center Health Network (WMCHealth). Dr. Gass and his team are often called upon to treat the sickest patients, the ones others can’t manage, so he agreed to take the 19-year old.
Upon arrival, Taylor was taken to the Cardiothoracic Intensive Care Unit under the care of Dr. Gass and David Spielvogel, MD, Chief of Cardiothoracic Surgery and Director of Heart Transplantation at WMC. A renowned cardiac surgeon, Dr. Spielvogel is recognized as a “go-to guy” for some of the most difficult cardiac care cases – and one of the few surgeons with outcomes that are statistically the best in the state. Despite her deteriorating health, the teenager was now in very good hands.
“When Taylor arrived, she was in cardiogenic shock and close to death,” Dr. Spielvogel recalls. “She was showing signs of multiple organ failure, and was very sick and weak.”
Taylor arrived connected to an ECMO machine, which allows the heart and lungs to rest and get better, by doing the work of adding oxygen and removing carbon dioxide from the blood. The machine then warms the blood, returns it to the artery and pumps the blood through the body. With the help of the ECMO machine, and time, “we were hoping her heart would recover,” says Dr. Spielvogel. After a week, however, with no improvement in her function, the ECMO machine was weaned and removed, and a Left Ventricular Assist Device (LVAD) was implanted as a bridge to cardiac transplant. However, because Taylor suffered from persistent right-sided heart failure, she would be unable to return home until transplant surgery was performed.
Meanwhile, during the four-month wait for a new heart, Dr. Gass saw his role evolve to include being a friend and counselor to Taylor, keeping her spirits up and her focus strong. “Here was this beautiful, brilliant, 19-year-old girl facing something she never would have expected,” he recalls. Beyond ongoing cardiac testing and monitoring, Dr. Gass also focused on “understanding who Taylor was, allowing her to freely express her feelings and not letting her condition get the best of her.”
“While it’s unusual for an otherwise healthy 19-year-old to face heart failure, it can happen,” noted Dr. Spielvogel. “Cardiomyopathy is often idiopathic, as in Taylor’s case, meaning that the cause is unknown. However, it tends to run in families. The cause is usually congenital or viral or the result of mitochondrial disease.” For Taylor, the most challenging part of the four-month wait was seeing her family “put everything on hold” while enduring a daily commute from Long Island to Westchester. During that time, she enjoyed the visitors who came to support her, and surprisingly, “I didn’t feel sick.” Finally, on April 20, 2016, Taylor received a donor heart.
“I was nervous in the beginning,” she admitted. “But I knew I was in the best hands.” She recalled how Kathy Brown, RN, ANP, the team’s senior Nurse Practitioner, treated her like “a daughter” and how the whole team seemed to always be present, not only in the medical sense but in a personal way, as well.
“The physical therapists and nursing staff did such a wonderful job with Taylor, helping her to get stronger. By the time she had the transplant, she was ready,” said Dr. Spielvogel, adding, “Kathy has a magic touch with the patients.”
Beyond providing patient care at “all phases of heart failure and the transplant process,” Brown also works to educate patients and their families on the status and the next steps of their treatment plans, as well as provide emotional support during a uniquely stressful time.
Just 12 days after the transplant, which was performed by Dr. Spielvogel, Taylor was discharged from the hospital and went home.
“When she first came to us, she was understandably very frightened, but as she got better, you could see her true character emerge,” Dr. Spielvogel says. “She made friends with the other transplant patients. Now, she is going back to college and changing her career to become a nurse.”
“Taylor is a remarkable young woman with a remarkable and supportive family,” says Brown. “There was a very good possibility she would not survive her hospitalization. I feel she is meant to do something more in this world. Her story is a reminder of what a true miracle the transplant is.”
The close relationship between the young college student and her cardiology team continues to this day. Taylor continues to see Dr. Gass once a month for support and follow-up care. She is currently working at her local library and devoting a great deal of time to LiveOn New York, New York City’s organ-procurement organization. At a recent event, she manned a sign-up table, obtaining signatures from 18 potential organ donors. Taylor hopes to write her own story someday, so others may benefit from her experience.
The most surprising thing about her experience, according to Taylor, is her newfound “sense of gratitude,” which has led to an increased desire to help others. “It’s the new normal,” she said. “I was given this beautiful gift and feel blessed and lucky. It’s an honor to give to others.” •