For many people with congestive heart failure, a wide assortment of medical, surgical and lifestyle treatments allows them to go on with their lives. Yet others are clearly on a steep decline. When patients can no longer stay out of the hospital or can barely function, experts say, they’ve reached the point when it’s time to talk heart transplant.
Running Out of Options
“Heart transplantation is an option for patients only if they have no other options,” says Dr. Mary Norine Walsh, medical director of heart failure and cardiac transplantation at St. Vincent Heart Center in Indianapolis, which performs 20 to 25 transplants a year.
In addition, candidates for transplant can have no disqualifying factors. Among others, that means patients can’t be morbidly obese or current smokers. So part of the discussion groundwork is encouraging patients to make significant lifestyle changes.
For heart failure patients, Walsh says, transplant usually comes at the end of a long road. They’ve been through stent procedures or bypass surgery. They take strong medications — ACE inhibitors, beta-blockers and aldosterone antagonists — to forestall the disease process. Many have defibrillator implants.
When those measures fail, Walsh says, when patients’ fatigue and shortness of breath continue to worsen, even at rest, “We may begin to think that heart transplantation is the best choice for them.”
Who’s Eligible?
The Johns Hopkins Comprehensive Transplant Center performs between 20 and 30 heart transplants a year, says Dr. Ryan Tedford, a cardiologist at Hopkins. While the upper age limit for heart transplant varies with each institution, 70 is the Center’s cutoff.
Doctors consider many factors when evaluating patients for transplant, including analyzing tests of liver and kidney function to determine whether poor blood flow is hampering the vital functions of these organs. One telltale sign of worsening heart failure, Tedford says, is a steady rise in the doses of diuretic drugs — used to relieve fluid buildup in a patient’s abdomen, feet, ankles, legs and lungs.
Patients being evaluated also undergo cardiopulmonary exercise testing. “It measures oxygen consumption and allows us to predict how well a patient’s going to do over the next year,” he says.
That one-year yardstick comes up repeatedly when experts talk about transplant candidates. “If I had a patient who I think has life expectancy better than that, I would never want to transplant them,” Tedford says. “But if it’s below that, and significantly below that, that’s when I will start to do an evaluation for a heart transplant or a heart pump.”
A mechanical heart pump – called a left ventricular assist device — is used as a bridge to help very sick patients survive while awaiting a donor, or as an alternative for those who either don’t want or aren’t eligible for heart transplant. Another piece of the transplant evaluation is determining whether patients have enough support at home to help them through the arduous process, Tedford adds. “We require, for the first couple weeks in particular, that patients have 24-hour care,” he says. While the goal is for patients to leave the hospital and function independently, that’s not always the case, with some patients requiring more care and rehab. And with all patients on “sternal precautions” after the surgery, they need someone to drive them to appointments, including weekly heart biopsies for a month post-transplant.
Trading Problems
Dr. John Boehmer is co-director of the heart failure program at Penn State Hershey Heart and Vascular Institute, which performs about 17 transplants a year. Experts agree that when patients undergo heart transplant, they’re exchanging one set of problems for another.
Rejection of the donor heart is “fairly common” in the first three to six months after transplant, Boehmer says. Intravenous medications to suppress the immune system — and prevent rejection of the donor heart — start during surgery. Afterward, patients undergo repeated heart biopsies to monitor for signs of rejection.
The downside of anti-rejection medicines is that they leave patients susceptible to opportunistic infections. Patients are closely monitored for fever and elevated white blood cell count, and treated as needed.
Bleeding complications from surgery are possible, Boehmer says. And because transplant is an open-heart procedure, stroke can occur. “But the good news is that in the majority of cases, we can manage complications,” he says. High blood pressure is a common transplant drug side effect requiring treatment, he adds.
Walsh notes “very significant” tremors can be a side effect of transplant drugs, but that should improve over time. Higher-dose steroids, used soon after transplant, can cause some patients to develop muscle weakness, she says, for which physical therapy can help.
Boehmer says survival is “well over 97 percent in the early perioperative period,” and about 87 percent at one year. “Somebody who lives after the first year — their conditional survival after surviving that long is much greater than 10 years,” he says.
When choosing a heart transplant center, patients should ask about the center’s specific outcomes, he suggests.
Precious Resource: Donor Hearts
Patients deemed eligible for transplant are enrolled in the United Network of Organ Sharing. Patients are ranked, with highest priority given to the sickest. Currently, 4,135 U.S. patients are waiting for hearts from deceased donors, according to the UNOS website. “The waiting times vary greatly depending on blood type, body size, preformed antibodies and the some other variables,” Boehmer says.
Walsh says donor organ availability also varies by region of the country. For example, wait times are much shorter in Southern California than the Indiana region where she practices. When it comes to your personal organ donor wishes, she says, “Make sure it’s not just on your driver’s license but that your loved ones know what your preferences and intentions are.”
Psychological Services
For people on the transplant waiting list, it’s an anxious time. Transplant programs include psychiatric evaluation, treatment and referral for ongoing counseling, Boehmer says. “We also have clergy,” he adds, and the transplant team works closely with palliative services, even with some patients receiving aggressive medical or surgical therapies.
Transplant patients experience a roller-coaster ride of emotions. “Usually there’s an initial elation that they got through the operation,” Boehmer says. While certain medications, particularly high-dose prednisone, can cause mood swings raging from euphoria to depression, most patients can be weaned off these drugs.
Even patients who do well can have initial anxiety about going home, he adds. “They’re no longer monitored. They no longer have a defibrillator in case their heart stops.” And caregivers — who’ve been subjected to enormous stress and shouldered many responsibilities during their loved one’s illness and treatment — now must adapt to a “new normal,” Boehmer says.
After Surgery
Other than artificial heart surgery, heart transplant is “the only surgery where the heart is taken entirely out of the body,” Walsh notes. So it’s quite dramatic. Post-op patients stay in the coronary care unit anywhere from two to five days, she says, but it can be much longer, even weeks, if they have a complicating illness.
For some transplant patients, life “can be completely normal,” Walsh says. “People recover and return to work and school and do whatever they wish,” including athletics. For the heart team members, it’s gratifying to see how well patients can do.
“We have one young lady who was transplanted as an adolescent — and now she’s in her 30s with two young kids,” Boehmer says. If donor families wish, they can meet with heart recipients who reach out to them. Otherwise, donor anonymity is respected.
Walsh says as patients become stable, the team goes from seeing them “very intensely, sometimes weekly” to having them check in just twice a year. “Any transplant cardiologist will say we occasionally end up missing our patients,” Walsh says. Do patients miss frequent staff encounters in return? No, she says: “They probably don’t.”
More from U.S. News
The 10 Best Heart-Healthy Diets
How to Help Aging Parents Manage Medications
Congestive Heart Failure: When It’s Time to Talk Transplant originally appeared on usnews.com
