Cardiomyopathy results from a weakening of the heart muscle that causes the heart to beat less vigorously. As the heart loses strength, it often enlarges to compensate for its lack of squeeze. Clinicians frequently classify the contractions by “ejection fraction” — the percentage of blood the heart is able to 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 appropriate treatment is not provided or followed. He was diagnosed with “atrial fibrillation, an irregular heart rhythm, along with a decreased heart pump” in 2017 — not an uncommon initial presentation of cardiomyopathy — and given a treatment plan that included lifestyle changes, such as restricting salt intake, losing weight and exercising, and medications 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 lethal heart rhythm.
As Fetterman put it after his stroke: “Like so many others, and so many men, in particular, I avoided going to the doctor, even though I knew I didn’t feel well. As a result, I almost died.”
I am a heart failure specialist. Patients like Fetterman are why the conversation between doctor and patient after a cardiomyopathy diagnosis is critical. My goal is both to explain the condition and establish a trusting relationship that will result in the patient embracing 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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Although I make sure my patients understand they have a serious, life-threatening condition, I add that, these days, many people with cardiomyopathy live long, fulfilling lives.
Studies suggest people are living longer in part because of a plethora of new innovations. The most notable are new medications called SGLT2 inhibitors. Initially developed to treat Type 2 diabetes, they also were found to prolong 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 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 likely to benefit from them are not on them, in some cases because many physicians, including cardiologists, have yet to update their practice but also because of high co-pays and administrative burdens placed on clinicians by insurance companies.
Many people get their initial cardiomyopathy diagnosis after they’ve had difficulty breathing or experienced swelling in their extremities because of excess fluid in the body. Once diagnosed, though, many patients enter a stable phase—but staying in that stable phase requires work. Lifestyle changes, such as losing weight, restricting salt intake and exercising, are key for living a long and healthy life with cardiomyopathy, as is taking medications regularly as prescribed by a physician.
The evidence suggests that taking four core categories of medications can add between three and eight years of life, in addition to the years added by lifestyle changes. These drug categories include: beta blockers (drugs that end in “-olol,” like metoprolol), ACE inhibitors (these end in “-pril,” like lisinopril) or ARBs (that end in “-artan,” like losartan) or the brand drug Entresto, MRAs such as spironolactone and, lastly, the SGLT2 inhibitors (that end in “-flozin,” such as empagliflozin and dapagliflozin). Clinicians should explain both the many benefits and the few risks of the drugs while imparting a sense of agency and ownership to patients.
“You are the quarterback, and we are your offensive line protecting you from being hit,” I often tell people.
Sometimes, even the best efforts don’t work — or work for only so long — and patients enter a more advanced stage of heart failure characterized by recurrent admissions to the hospital, an inability to tolerate medications due to low blood pressure and in some cases a progressive failure of organs such as the kidneys and lungs. Patients experience progressive difficulty in breathing, initially only when they are exercising 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 sutured into the patient’s heart to help pump blood throughout the body. Survival after heart transplantation is on average 13 years, with many patients living beyond two decades. The mechanical pumps, called left ventricular assist devices or LVADs, have also come a long way and can add years more of life.
Both heart transplant 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 exceed 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 patients with heart failure may benefit from palliative care at any stage of their illness.
Because cardiomyopathy remains a challenging and burdensome disease, we need to maximize all efforts 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 abnormal heart rhythms and heart attacks, that can lead to heart failure.
Yet treatments for cardiomyopathy have transformed it from a death sentence to a condition that many people can live with better and longer than ever before. Given advancements in science and medicine, there’s hope it will become an even less frightening diagnosis in the future. For that to happen, it is critical for patients to get 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 Cardiac Disease” and the just-published book “The Song of Our Scars: The Untold Story of Pain.”