How Heart Failure Patients Can Succeed

Regina Rexrode, 46, an elementary school teacher in Noblesville, Indiana, works with some 600 kids every week in the school's computer lab. She says her job is "a lot of fun" and keeps her really busy. So she doesn't have time to dwell on her medical condition, even though it could make her a candidate for organ transplant. Rexrode, whose complicated medical history includes congestive heart failure, is determined to do whatever she can to avoid that surgery. She's making major lifestyle changes -- and above all, she's taking control of the salt in her diet.

With Success Comes Heart Failure

In congestive heart failure, or simply heart failure, a weakened heart can no long pump well enough to meet the body's need for blood and oxygen. Patients become increasingly fatigued and short of breath, making it hard to get around. Fluid buildup is a heart-failure hallmark, leading to markedly swollen legs, feet and abdomen, and collecting in the lungs.

Cardiologist Mary Norine Walsh, medical director of heart failure and cardiac transplantation at St. Vincent Heart Center in Indianapolis, says the center sees hundreds of heart failure patients each year. The condition affects some 5 million people in the United States.

"It's a disease that to some extent has become more common because of the success we've had with treatment of heart disease," says Walsh, who is also the vice president-elect of the American College of Cardiology. For instance, she says, patients who in the past would have died after a heart attack are now being saved with emergency angioplasty and medications such as aspirin and statins.

"The baby boomer generation is now getting older, and with more advanced age comes more heart failure," Walsh says. "Over time with coronary heart disease, hypertension and diabetes -- heart failure is more common."

When people learn their diagnosis, the response is "very individual," she says. "The term heart failure is a very hard diagnosis for people to hear. It is to some extent a life-limiting one." But people are resilient, she adds, and they feel better once treated. Some patients go on to be asymptomatic -- free of symptoms -- while others may only have mild symptoms.

Embattled Heart

For Rexrode, the road to heart failure began in infancy. She was born with several congenital conditions, including heart valve defects. She had open-heart surgery in second grade and a variety of heart procedures as a preschooler.

Fortunately, Rexrode was doing better by elementary school. Her parents encouraged her to have a normal childhood with as few restrictions as possible (although she regrets missing out on gymnastics). She completed high school and college, got married and started a family including two children -- now teens -- with her husband.

But in 2006, new health problems arose. Rexrode started retaining fluid around her abdomen, known as ascites. "I gained a lot of weight and was concerned," she recalls.

A barrage of testing revealed she had two heart arrhythmias: atrial flutter and atrial fibrillation. "I also got a few new labels added to my medical history -- congestive heart failure and cardiomyopathy," Rexrode says. She started on new medication to regulate her heart rate and eventually had surgery to implant a pacemaker and cardioverter defibrillator.

Through it all, Rexrode has tried to keep on an even keel, and to stress that she's much more than the sum of her medical diagnoses. Initially, she saw congestive heart failure as another condition she had to manage, a new part of her routine.

Decongesting and Diet

When a patient is diagnosed with heart failure, Walsh says, the first priority is using medication to get rid of the fluid buildup in the lungs, legs and abdomen -- to "decongest" the patient.

Soon after, she says, patients are started on angiotensin-converting enzyme inhibitors and beta blockers. These "are powerful medications in stabilizing the disease process," Walsh says, "and they have been demonstrated to help decrease symptoms and improve survival with the disease."

Longer-term priorities focus on extending and improving patients' quality of life -- which includes keeping them out of the hospital -- and helping them meet their personal goals "whether that is getting back to work, playing with grandchildren, golfing, exercising and doing the leisure activities they like," she says.

"A low-sodium diet is crucial to feeling better and maintaining a patient's well-being without fluid overload," she adds. "The recommendation is that patients take in no more than 2,000 milligrams of sodium daily." Certain patients may require tighter restrictions.

Dietitians at the center work with patients to help get them started. Dietitians are "invaluable," Walsh says, in giving the message on low-sodium diets, offering alternative food choices and educating patients on how to prepare and serve sodium-free food.

Walsh's No. 1 advice to patients is: "Take your medicines as directed. They work." Next is maintaining the recommended diet, keeping follow-up appointments and following lifestyle recommendations, including regular exercise.

Slow Start

Rexrode admits to being reluctant at first when it came to following a healthy, low-sodium diet. She describes "eating junk like chips," although doling out the correct amount. Or, aware of the high sodium content of restaurant food, she'd go without eating all day so she could eat out. But she wasn't putting many fruits or vegetables on her plate. And she wasn't really hungry because her stomach was so bloated.

As for exercise, she recalls making excuses like "I'm busy" even though a treadmill was as close as her basement. She was losing muscle weight and her "clothes were falling off," she says, yet her stomach was swollen.

Transplant Talk

For patients who are very ill and not responding to medications, surgical options are considered, Walsh says. These include the implantation of a left ventricular assist device, a battery-operated mechanical pump. Many patients "can be restored to great functional status" with an LVAD, she says. For other patients, she says, heart transplant is a possibility, depending on factors including donor organ availability and whether the patient has other serious illnesses.

This January, Rexrode says, she had that conversation with Walsh, who treats her congestive heart failure. She learned that her condition had reached a point where heart transplant might be a consideration. Moreover, she says, related liver problems meant she might need a new liver as well. Despite the lifelong complications, Rexrode says, "I like my heart -- it's been with me my whole life. I don't want to get rid of it."

Motivation

That conversation motivated Rexrode to really change her lifestyle, including sticking to her new, tighter sodium restriction -- under 1,500 mg a day. "I lost 10 pounds," she says. "I started eating fresh fruits and vegetables and really looking at nutrition labels." She bought a small kitchen scale to weigh her meat, chicken and fish to get a truer measure of her sodium consumption.

She's joined a gym and now works out much more regularly. She does cardio along with a bit of weight training to build her muscles back up. If needed, she takes a diuretic -- her dosage was recently raised -- to help rid her body of excess fluid.

Rexrode's family supports her efforts, including the new, healthier nutrition regimen. For one thing, they hardly eat out anymore. "It's shocking how much sodium there is in just one meal," she notes. They're also bringing less processed food into the house and eating more fish and other types of lean protein. She's started her own blog to share what she's learned. "It helps keep me honest," she says. "I will continue to battle with eating correctly and watching my sodium," she adds. "But I have people who love me and hold me accountable."

Lisa Esposito is a Patient Advice reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at lesposito@usnews.com.