Cardiomyopathy is scary. But today, heart disease is less deadly.

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Heart disease remains the leading cause of death in the United States. But medical innovations have made cardiomyopathy, also known as the terrifying condition “heart failure,” less of a threat.

Cardiomyopathy affects millions of Americans and is the leading cause of hospital admissions for people over 65 in the United States. When Pennsylvania Lieutenant Governor John Fetterman (D) suffered a stroke during his campaign for the US Senate in May, his campaign revealed that he had been diagnosed with cardiomyopathy.

Cardiomyopathy is the result of a weakening of the heart muscle that causes the heart to beat with less force. As the heart loses strength, it often enlarges to compensate for its lack of pressure. Doctors often classify contractions by “ejection fraction,” the percentage of blood that the heart can eject. An increasing number of Americans also have heart failure with a normal ejection fraction.

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Fetterman, 52, is a case study in what can happen if proper treatment is not provided or followed. He was diagnosed with “atrial fibrillation, an irregular heart rhythm, along with a decreased heart pump” in 2017, a common initial presentation of cardiomyopathy, and put on a treatment plan that included lifestyle changes such as restricting of salt, losing weight and exercise, and medications that studies show can make a big difference.

But Fetterman didn’t follow his doctor’s treatment plan, not even going back to the cardiologist for regular checkups. After his stroke, doctors disclosed his diagnosis of cardiomyopathy and implanted a defibrillator to prevent a lethal heart rhythm.

As Fetterman said after his stroke: “Like so many others, and so many men in particular, I avoided going to the doctor, even though I knew I wasn’t feeling well. As a result, I almost died.”

I am a heart failure specialist. Patients like Fetterman are the reason the doctor-patient conversation after a diagnosis of cardiomyopathy is critical. My goal is both to explain the condition and to establish a relationship of trust that results in the patient agreeing to appropriate follow-up. This can mean walking a fine line between conveying the seriousness of the diagnosis to a patient and avoiding a sense of doom, which many people will feel when told they have heart failure.

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While I make sure my patients understand that they have a serious, life-threatening condition, I add that many people with cardiomyopathy live long and full lives these days.

Studies suggest that people are living longer in part due to a host of new innovations. The most notable are new drugs called SGLT2 inhibitors. Initially developed to treat type 2 diabetes, they have also been found to prolong and improve the lives of heart failure patients; they also have minimal side effects and can be used for heart failure patients with reduced or normal ejection fraction.

Unfortunately, because these drugs are new (the first SGLT2 inhibitor was approved by the Food and Drug Administration in 2020 to treat heart failure), many patients who would likely benefit from them don’t take them, in some cases because many Physicians, including cardiologists, have not yet upgraded their practice, but also because of the high copays and administrative burdens that insurance companies place on physicians.

Many people get their initial diagnosis of cardiomyopathy after having difficulty breathing or experiencing swelling in the extremities due to excess fluid in the body. However, once diagnosed, many patients enter a stable phase, but staying in that stable phase takes work. Lifestyle changes, such as losing weight, restricting salt intake, and exercising, are key to living a long and healthy life with cardiomyopathy, as is taking your medications regularly as prescribed by a doctor.

Evidence suggests that taking four main categories of medication can add three to eight years to life, in addition to the years added by changes in lifestyle. These drug categories include: beta-blockers (drugs that end in “-olol,” such as metoprolol), ACE inhibitors (that end in “-pril,” such as lisinopril), or ARBs (that end in “-artan,” such as losartan) or the brand-name drug Entresto, MRAs such as spironolactone, and finally SGLT2 inhibitors (that end in “-flozin”, such as empagliflozin and dapagliflozin). Physicians must explain both the many benefits and few risks of medications while imparting a sense of agency and ownership to patients.

“You are the quarterback and we are your offensive line that protects you from getting hit,” I often tell people.

Sometimes even the best efforts don’t work, or work for a limited time, and patients enter a more advanced stage of heart failure characterized by recurrent hospital admissions, inability to tolerate medications due to low blood pressure, and, in in some cases, a progressive failure of organs such as the kidneys and lungs. Patients experience progressive shortness of breath, initially only when exercising and eventually even at rest.

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When this happens, doctors may recommend surgical treatments, such as a heart transplant or the implantation of mechanical pumps that are sewn into the patient’s heart to help pump blood throughout the body. Survival after heart transplantation averages 13 years, with many patients living more than two decades. Mechanical pumps, called left ventricular assist devices, or LVADs, have also come a long way and can add years to life.

Both heart transplantation and LVADs carry significant risks: rejection of the donor heart, infections, and cancers can affect heart transplant recipients; and bleeding, infections, and strokes affect LVAD receptors. Because the risks often outweigh the benefits, many patients are not good candidates for these therapies. At that stage, patients may turn to palliative care that focuses on maximizing quality of life and comfort-focused care rather than just length of life, although heart failure patients may benefit from palliative care at any stage of their disease.

Because cardiomyopathy remains a challenging and burdensome disease, we must maximize all efforts to prevent heart failure in the first place. For most people, this means managing blood pressure and diabetes, losing weight, and preventing other forms of heart disease, including abnormal heart rhythms and heart attacks, which can lead to heart failure.

However, treatments for cardiomyopathy have transformed it from a death sentence to a condition with which many people can live better and longer than ever before. Given advances in science and medicine, there is hope that it will become an even less scary diagnosis in the future. For that to happen, it is critical that patients receive the right care at the right time.

Haider J. Warraich is a cardiologist at Brigham and Women’s Hospital, VA Boston Healthcare System, and Harvard Medical School. He is the author of “State of the Heart: Exploring the History, Science, and Future of Heart Disease and the recently published book “The Song of Our Scars: The Untold Story of Pain.”

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