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

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Heart disease remains America’s leading cause of death. But medical innovations have made cardiomyopathy, also known as the scary-sounding condition “heart failure,” less threatening.

Cardiomyopathy affects millions of Americans and is the leading cause of hospitalization for people over the age of 65 in the United States. as Lt. gov. John Fetterman (D) of Pennsylvania suffered a stroke while campaigning for the US Senate in May, his campaign revealed he had been diagnosed with cardiomyopathy.

Cardiomyopathy results from a weakening of the heart muscle, causing the heart to beat less vigorously. When the heart loses strength, it often enlarges to make up for its lack of pressure. Doctors often classify contractions by “ejection fraction” — the percentage of blood that the heart can push forward. An increasing number of Americans also have heart failure with a normal ejection fraction.

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Fetterman, 52, is a case study of what can happen when appropriate treatment is not provided or followed. He was diagnosed in 2017 with “atrial fibrillation, an irregular heart rhythm associated with a decreased heart pump” — not an uncommon first presentation of cardiomyopathy — and was given a treatment plan that included lifestyle changes such as salt restriction, weight loss and exercise, and medications that studies show can make a big difference.

But Fetterman didn’t stick to his doctor’s treatment plan and didn’t even go to the cardiologist for regular consultations. After his stroke, doctors revealed his cardiomyopathy diagnosis and implanted a defibrillator to prevent a fatal heart rhythm.

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

I’m a heart failure specialist. Patients like Fetterman make the doctor-patient conversation so important after a cardiomyopathy diagnosis. My goal is to explain the condition and establish a trusting relationship that will result in the patient accepting proper follow-up care. This can mean walking a fine line between communicating the seriousness of the diagnosis to a patient and avoiding the sense of doom many people 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 today live long, fulfilling lives.

Studies suggest that people are living longer, in part because of a plethora of new innovations. Most notable are new drugs called SGLT2 inhibitors. Originally developed to treat type 2 diabetes, they have also been found to prolong and improve the lives of patients with heart failure; They also have minimal side effects and can be used in heart failure patients with both reduced and normal ejection fraction.

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 are likely to benefit from them do not take them, in some cases because many physicians, including cardiologists, they have not yet updated their practices, but also because of the high co-payments and administrative burdens that insurance companies impose on doctors.

Many people get their initial diagnosis of cardiomyopathy after experiencing difficulty breathing or swelling in the extremities due to excess fluid in the body. However, once diagnosed, many patients enter a stable phase – but staying in this stable phase takes work. Lifestyle changes such as weight loss, salt restriction, and exercise, as well as regularly taking medications as directed by your doctor, are key to living a long and healthy life with cardiomyopathy.

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

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

Sometimes even the best efforts don’t work — or only for so long — and patients progress to a more advanced stage of heart failure, characterized by repeated hospitalizations, intolerance to medications due to low blood pressure, and in some cases, progressive failure of organs such as kidneys and lungs. Patients suffer from progressive breathing difficulties, initially only with physical exertion 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 pump blood around the body. Survival after heart transplantation averages 13 years, with many patients living longer than two decades. The mechanical pumps, called Left Ventricular Assist Devices or LVADs, have also come a long way and can add years to life.

Both heart transplants and LVADs carry significant risks: rejection of the donor heart, infection, and cancer can affect heart transplant recipients; and bleeding, infection, and stroke affect LVAD recipients. Because the risks often outweigh the benefits, many patients are not good candidates for these therapies. At this stage, patients may turn to palliative care, which focuses on maximizing quality of life and comfort-based care rather than just longevity, although heart failure patients can benefit from palliative care at any stage of their disease.

As cardiomyopathy remains a challenging and debilitating disease, we must make every effort to prevent heart failure in the first place. For most people, this means controlling blood pressure and diabetes, losing weight, and preventing other forms of heart disease, including arrhythmias and heart attacks, which can lead to heart failure.

But treatment for cardiomyopathy has turned it from a death sentence into a condition that many people can live with better and longer than ever before. With advances in science and medicine, there is hope that it will become an even less scary diagnosis in the future. To achieve this, it is crucial that patients receive the right treatment 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 bookThe Song of Our Scars: The Untold Story of Pain.”

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