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, aka the scary condition “heart failure,” less of a threat.

Cardiomyopathy affects millions of Americans and is the leading cause of hospitalization for people over 65 in the United States. When Pennsylvania Lieutenant Governor John Fetterman (D) 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 which causes the heart to beat less vigorously. As the core loses strength, it often enlarges to compensate for its lack of compression. Clinicians frequently classify contractions by “ejection fraction” – the percentage of blood the heart is able to squeeze forward. A growing number of Americans also suffer from heart failure with a normal ejection fraction.

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Fetterman, 52, is a case study of what can happen if proper treatment is not provided or followed. He was diagnosed with ‘atrial fibrillation, irregular heartbeat, as well as decreased heart pump’ in 2017 – an uncommon initial presentation of cardiomyopathy – and given a treatment plan that included lifestyle changes , such as restricting salt intake, weight loss and exercise and medications that studies show can make a big difference.

But Fetterman didn’t follow his doctor’s treatment plan — not even returning to the cardiologist for regular checkups. After his stroke, doctors revealed his cardiomyopathy diagnosis and implanted a defibrillator to prevent a fatal 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 nearly died.

I’m a heart failure specialist. Patients like Fetterman are why the conversation between doctor and patient after a diagnosis of cardiomyopathy is critical. My goal is both to explain the condition and to establish a relationship of trust that will allow the patient to accept appropriate follow-up. It 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 they learn they have heart failure.

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

Studies suggest people are living longer in part because of a plethora of new innovations. Most notable are newer drugs called SGLT2 inhibitors. Originally developed to treat type 2 diabetes, they have also been shown 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 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 may benefit from them do not take them, in some cases because that many doctors, including cardiologists, have not yet updated their practice, but also because of the high co-payments and administrative burdens imposed on clinicians by insurance companies.

Many people receive their initial diagnosis of cardiomyopathy after having difficulty breathing or experiencing swelling in the extremities due to excess fluid in the body. Once diagnosed, however, many patients enter a stable phase – but staying in that stable phase takes work. Lifestyle changes, such as weight loss, restriction of salt intake, and exercise, are key to living a long and healthy life with cardiomyopathy, as is regular intake of doctor-prescribed medications .

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

“You’re the quarterback and we’re your offensive line protecting you from hits,” 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 recurrent hospital admissions, inability to tolerate medication due to low blood pressure and, in some cases, progressive failure of organs such as the kidneys and lungs. Patients experience progressive difficulty breathing, 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 sutured into the patient’s heart to help pump blood throughout the body. Survival after heart transplantation averages 13 years, with many patients living beyond two decades. Mechanical pumps, called left ventricular assist devices or LVADs, have also come a long way and can add years of extra life.

Heart transplantation and LVADs carry significant risks: rejection of the donor heart, infections and cancers 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 point, patients may turn to palliative care that focuses on maximizing quality of life and care that focuses on comfort rather than just lifespan, although patients with heart failure may benefit from palliative care at any stage of their illness.

Because cardiomyopathy remains a difficult and burdensome disease, we must maximize all efforts to prevent heart failure in the first place. For most people, that 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 advances in science and medicine, it is hoped that this will become an even less frightening diagnosis in the future. For this to happen, it is essential 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 book that just came out”The Song of Our Scars: The Untold Story of Pain.”

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