Women are more aware of their risk of heart attack than in the past, including the differences in symptoms they’re likely to experience compared with men. But there’s another serious heart health threat that has not gotten an equal amount of attention: heart failure. Heart failure affects more than 2.5 million women in the United States alone, and it’s the leading reason for hospitalization and one of the major causes of death in women over age 65. Research shows that the rate of heart failure is rising more among women than men. And yet, as with other health conditions, women are not well represented in heart failure studies and clinical trials, including those that look at the most effective treatments. Though the National Institutes of Health has, in recent years, pushed to have more women included in research, we don’t yet have all the answers we need. Here’s what you need to know and what you can do now to protect yourself.

Understanding heart failure

Heart failure is the progressive slowing of the heart’s ability to function properly in the pumping phase, the relaxation phase, or both. It specifically affects the largest and strongest of the heart’s chambers, the left ventricle, which is responsible for pumping oxygen-rich blood from your lungs to the rest of your body. It may also affect the right ventricle, which pumps blood into the lungs for oxygenation, and, in some cases, it can affect both ventricles.

There are two primary types of heart failure:

  • Heart failure with preserved ejection fraction (HFpEF), or diastolic heart failure, where the ventricle contracts normally, but the heart is unable to fully relax and refill properly between beats because it has become stiff. About half of all people with heart failure have HFpEF, but it affects almost twice as many women as men.
  • Heart failure with reduced ejection fraction or systolic heart failure, where the ventricle loses its ability to contract or pump out blood with the needed amount of force.

Heart failure doesn’t only affect the heart. It can cause fluid to build up in the lungs, resulting in shortness of breath or fatigue, and cause swelling in other parts of the body. When the heart can’t properly supply oxygen-rich blood to other organs, kidney failure, liver failure, or even brain failure can result over time.

What causes heart failure in women

Risk factors for heart failure include obesity, hypertension (particularly uncontrolled hypertension), and diabetes, all three of which are more common in women. There is probably a genetic predisposition to explain why some women with these issues develop heart failure and others don’t, but it hasn’t yet been identified.

Coronary artery disease is a major cause of heart failure. Although it can be present in women, it is less likely to be the chief cause in women. Another risk factor for heart failure is sleep apnea, a condition often related to obesity.

There are also sex-specific risk factors for heart failure in women. Risks associated with being female include the ups and downs of female hormones. The loss of estrogen after menopause, for instance, likely plays a role in why heart failure is common is women after 65. But young women are at risk as well. Cardiomyopathy, an umbrella term for certain diseases of the heart muscle, is one of many causes of heart failure. Peripartum cardiomyopathy is a specific form of heart failure affecting young women near the end the pregnancy or in the months immediately after a baby is born. It’s thought that the physical stressors of pregnancy can cause changes in the heart. Separately, the hypertensive disorders of pregnancy, eclampsia and preeclampsia increases a woman’s lifelong risk for heart failure.

Coronary microvascular dysfunction (CMD), a disease of the small vessels of the heart that can lead to spasms and decrease blood flow, which is more common in women, can also be related to HFpEF. The National Heart, Lung, and Blood Institute’s WISE preHFpEF research study is currently trying to better understand this link.

Another type of heart failure that disproportionately affects women, including otherwise healthy women, is Takotsubo cardiomyopathy, also called stress cardiomyopathy or broken heart syndrome. This is when abnormal movements in the walls of the left ventricle cause a ballooning that looks like a tako-tsubo, a pot used by fishermen in Japan where the condition was first identified. It can be traced to severe stress, emotional or physical, and causes symptoms similar to heart-attack pain that seem to come out of nowhere. Unlike typical cases of heart failure, this type usually goes away with treatment, though it can, in rare instances, be fatal.

Another specific form of heart failure affecting women is breast cancer therapy-induced cardiomyopathy, either from chemotherapy drugs or from radiation therapy.

Recognizing heart failure in women

Know the key symptoms:

  • Shortness of breath, even while sleeping. Some women report needing to sleep elevated or with on more pillows to breathe.
  • Coughing up white or pink foamy mucous
  • Swelling in the legs that can extend to the feet as well as the abdomen
  • Fatigue and weakness
  • Very rapid weight gain from fluid buildup
  • Nausea and loss of appetite
  • Possible chest pain

Don’t ignore these symptoms or write them off to being out of shape. If you experience any of them, see your doctor right away. Detecting heart failure early is important to prevent its progression. If caught in an early stage, with treatment and by controlling blood pressure, cholesterol, and diabetes, you can live a long life.

Being unaware of heart failure symptoms, coupled with the fact that many women don’t make the time they should for doctor visits, translates to more women being diagnosed with advanced heart failure, for which there are fewer management options, when they finally seek medical attention.

That being said, there can be challenges to getting the right diagnosis. Some primary doctors still don’t recognize the prevalence of heart failure in women. And some tests aren’t as accurate as others. Advocate for yourself to get the tests you need:

  • Blood work. The heart and blood vessels make a protein called brain natriuretic peptide (BNP). The BNP blood test measures levels of this protein. Shortness of breath and BNP levels that are higher than normal point to heart failure.
  • Chest X-ray. X-ray images can show the condition of the lungs and heart.
  • Echocardiogram. This ultrasound­based test can assess heart function and is readily available. It is the first test to obtain in case of heart failure, but it has limitations.
  • Cardiac MRI. Numerous studies have shown that a diagnostic cardiac MRI is better for detecting heart failure, and detecting it earlier, in women and men. It’s far more sensitive than an echocardiogram in revealing the workings of the heart. However, cardiac MRI also has limitations. The MRI image becomes distorted by metal, so the image can be suboptimal in patients with surgical clips or stents, for instance. MRI technology is complex and expensive, and access to cardiac MRIs can vary depending on location, insurance coverage, and referral policies.

Treating heart failure in women

The historically low inclusion of women, or lack thereof, in heart failure clinical trials has made it difficult to analyze sex differences in response to heart failure therapies.

The specific drugs used differ for HFpEF and HFrEF, but in general they include:

  • Diuretics including the class of drugs called mineralocorticoid receptor antagonists (MRA) such as eplerenone (Inspra), spironolactone (Aldactone), and finerenone (Kerendia)
  • Angiotensin-converting enzyme (ACE) inhibitors or angiotensin II receptor blockers (ARB) and angiotensin receptor neprilysin inhibitors (ARNi), such as sacubitril-valsartan (Entresto)
  • Beta-blockers such as carvedilol or metoprolol
  • SGLT-2 or or sodium-glucose co-transporter-2 inhibitors such as empagliflozin (Jardiance) or dapagliflozin (Farxiga)

Recent research has also found that semaglutide, the GLP-1 receptor agonist that has garnered a lot of attention for weight loss and diabetes control, improved outcomes for people with heart failure who were overweight, even if they didn’t have diabetes.

Monitoring is important, especially to check electrolytes when taking diuretics because they can lower potassium, increase sodium levels, and affect kidney function.

In later stages of heart failure, when medication isn’t enough, you should be referred to a heart failure center for advanced therapies. If you don’t live near one, you may be able to access a virtual second opinion at one of them, a service offered at Cedars-Sinai in Los Angeles.

You may need to advocate for yourself: One study that looked at nine U.S. advanced heart failure centers found that only 26.6 percent of their referrals were women.

Care options for advanced heart failure range from devices that help the left ventricle pump blood to the rest of the body, such as a left ventricular assist device (LVAD), to cardiac resynchronization therapy (CRT), a specialized pacemaker, to heart transplant.

Research has found that women are more likely than men to respond to CRT, and to experience better survival rates, improved ejection fraction, and enhanced quality of life.

Heart transplant can keep you alive when heart failure reaches its final stage. Women account for only about 25 percent of U.S. heart transplant recipients. While men and women have similar survival rates, female transplant recipients tend to have more complications, pointing to the need for inclusion in post-transplant research.

Steps to prevent heart failure

Lifestyle changes that will help you avoid heart failure are similar to managing it:

  • Lose weight if you’re overweight or obese. This will also help prevent hypertension and diabetes along with a host of heart ailments.
  • If you have high blood pressure, cholesterol and/or diabetes, work to get them under control.
  • Follow a healthy diet and get regular exercise.
  • Don’t smoke and don’t drink.
  • Get regular checkups.

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