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


Heart disease remains America’s biggest killer. But medical innovations have made cardiomyopathy, also known as the terrifying condition “heart failure,” less threatening.

Cardiomyopathy affects millions of Americans and is the leading cause of hospitalizations for people over 65 in the United States. When Pennsylvania Lt. gov. John Fetterman (D) suffered a stroke while campaigning 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 less vigorously. As the heart loses strength, it often expands to make up for the lack of compression. Clinicians often classify contractions by “ejection fraction” — the percentage of blood the heart can squeeze 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 if the right treatment isn’t given or followed. He was diagnosed with “atrial fibrillation, irregular heart rhythm and impaired heart pump” in 2017 – a not uncommon first presentation of cardiomyopathy – and was put on a treatment plan that included lifestyle changes, such as limiting salt intake, losing weight, and exercising. and drugs that studies show can make a big difference.

But Fetterman failed to follow his doctor’s treatment plan — not even going back to the cardiologist for regular consultations. After his stroke, doctors revealed his cardiomyopathy diagnosis and implanted a defibrillator to prevent a deadly heart rhythm.

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

I am a specialist in heart failure. Patients like Fetterman are why the doctor-patient conversation after a cardiomyopathy diagnosis is critical. My goal is both to explain the condition and to build a relationship of trust that will lead the patient to embrace appropriate follow-up. This may mean walking a fine line between conveying the seriousness of the diagnosis to a patient and avoiding the sense of foreboding that many people will feel when they hear that they have heart failure.

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

Studies suggest that people are living longer, in part because of a plethora of new innovations. The most notable are new drugs called SGLT2 inhibitors. Initially developed to treat type 2 diabetes, they have also been shown to extend and improve the lives of patients with heart failure; they also have minimal side effects and can be used for heart failure patients with both reduced and 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 probably don’t benefit from them, in some cases because many doctors, including cardiologists, have closed their practice. still need to be updated, but also because of the high co-payments and administrative burdens placed on doctors by insurance companies.

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

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

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

Sometimes even the best efforts don’t work — or only work for so long — and patients enter a more advanced stage of heart failure, characterized by repeated hospitalizations, an inability to tolerate medications due to low blood pressure, and in some cases, a progressive failure of heart disease. organs such as the kidneys and lungs. Patients experience increasing difficulty in breathing, initially only during exertion and eventually even at rest.

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When this happens, doctors may recommend surgical treatments, such as a heart transplant or implantation of mechanical pumps that are stitched into the patient’s heart to help pump blood around the body. Survival after a heart transplant is an average of 13 years, and many patients live more than two decades. The mechanical pumps, called left ventricular assist devices or LVADs, have also come a long way and can add years of 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 recipients. Because the risks often outweigh the benefits, many patients are not good candidates for these therapies. At that stage, patients can turn to palliative care that focuses on maximizing quality of life and comfort-oriented care rather than just length of life, although patients with heart failure can benefit from palliative care at any stage of their disease. concern.

As cardiomyopathy remains a challenging and troublesome disease, we must first and foremost maximize all efforts to prevent heart failure. For most people, this means controlling 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.

Yet treatments for cardiomyopathy have transformed it from a death sentence into a condition that many people can live with better and longer than ever before. Given the advances in science and medicine, there is hope that it will become an even less frightening 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 bookThe Song of Our Scars: The Untold Story of Pain.”

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