You may have heard the old expression, “holding your heart in your hands.”
Some patients in a novel program at Baylor University Medical Center in Texas are doing just that.
The program lets people who’ve had heart transplants hold and examine the organs that used to beat inside their chests.
The opportunity serves both as a form of closure and to encourage the patients — and their family and friends — to take better care of their new hearts.
The program, now in its third year, remains the only one of its kind in the country.
The inspiration for it came from Dr. William C. Roberts, Baylor’s chief cardiac pathologist and executive director of the Baylor Heart and Vascular Institute.
He was walking down the hallway of a Dallas hospital a few years ago when he bumped into a patient who had had a successful heart transplant a decade earlier.
“I understand you have my heart,” the man said to Roberts. “I’d like to see it.”
This chance encounter was the springboard for Baylor’s Heart to Heart program, where patients can request some quality time with their old hearts.
Witnessing the damage
Many patients invite family and friends along to the sessions, led by Roberts or another pathologist from the hospital.
Some hearts are visibly covered in fat while others may have adhesions from bypass surgeries or scarring from heart attacks.
“They can see what caused all their trouble,” Roberts said.
But hearts that failed because of conditions not related to behaviors — such as idiopathic dilated cardiomyopathy — may show no visible damage.
“It’s very revealing to them. They take the information to heart,” Susan Hall, media relations manager at Baylor Scott & White Health, told Healthline. “It’s fascinating to see how families react. Some put together a family history of heart disease they hadn’t considered before.”
Doctors explain the condition that led to the need for an individual’s heart transplant, and encourage patients to care for their transplanted organs by following a heart-healthy diet, not smoking, taking their medication, and getting adequate exercise.
Transplant coordinators and cardiologists at Baylor also help facilitate the show-and-tell sessions.
Studies have shown that 1 in 3 transplant patients fail to comply with their post-surgical lifestyle and treatment plans.
“We have 6 million people in this country with heart failure, and we do about 2,200 heart transplants, so we tell patients that you are very special,” Roberts told Healthline. “We try to explain that you’re very lucky to have a chance to start over, so you have to take care of this heart.”
Saving the evidence
Launched in 2014, the Heart to Heart program has reunited about 80 transplant patients with their hearts.
Baylor is one of just a handful of hospitals that routinely retain transplanted organs.
The hospital began to save the organs after Roberts joined the staff in 1993. Most other facilities use them for research, or discard them.
That has hampered the ability of other hospitals to replicate the Baylor program.
There also is a cost associated with storing the organs, as well as the time spent by health professionals running the Heart to Heart program.
But Roberts views having a patient be able to see their transplanted organ as a right, not a privilege.
“If patients have something removed from their body, such as a heart, they ought to be able to see it,” he said.
Patient response to the Heart to Heart program has been positive.
A study published in the October 2016 issue of the Journal of Heart and Lung Transplantation found that those who took part in the sessions overwhelmingly said that they were comfortable with the experience.
They viewed it as a valuable learning opportunity and would recommend Heart to Heart to other transplant patients.
Roberts said he would like to see further research into the long-term impact of the program on heart-healthy behaviors, although no such study has yet been conducted.
Dr. Clyde Yancy, chief of cardiology at Northwestern University’s Feinberg School of Medicine, said the Heart to Heart program offers a “very teachable moment” for healthcare providers who are always searching for times when they have the rapt attention of patients.
Allowing transplant patients to hold their heart in their hands “may be sufficient to empower them and reinforce the message for patients and in their role as advocates,” especially for those who are visual learners, he said.
But the program should not be replicated until data shows that it has a lasting effect on behavior, Yancy contended.
“If it doesn’t affect change then it becomes an exercise that comes with a cost and some risk because we don’t always know what the patient’s reaction will be,” he said.
“We’re all looking for ways to change adult behaviors, so it would be wonderful if the program was shown to effect change,” Yancy added.