Most people have never heard the word “endocarditis”…and they certainly don’t know what it is…how easy it is to get it…and how very dangerous it is. But they should. This life-­threatening condition can defy detection…until it is too late. Surprising: The risk of dying from a heart attack is about 5% to 6%…the risk of dying from endocarditis is about 30% to 40%.

Here’s how to protect yourself…from heart-valve disease specialist Wael Jaber, MD, a specialist in nuclear cardiology and echocardiography imaging.

What is endocarditis? Often called infective endocarditis or bacterial endocarditis, endocarditis is inflammation of the lining of your heart valves caused by a bacterial infection that originated somewhere else in your body. If one (or more) of your heart valves is vulnerable for one reason or another, bacteria seize the opportunity to colonize in and, quite bluntly, eat away at the valve(s). The infection can easily spread to other valves and even the heart chambers…and that’s when endocarditis can become fatal.

According to worldwide statistics, the number of people experiencing endocarditis annually has more than doubled over the past 30 years to more than one million. Because endocarditis is not always properly identified as a cause of death—sepsis or infection may be given—that number likely is even higher.

What is the most common cause of endocarditis? The root cause of endocarditis typically is a bacterial infection. We all live with bacteria—in our mouths, on our skin and in our digestive tract. Your own or an external source of bacteria can get into your bloodstream during, say, dental work or a procedure such as a biopsy. But an infection also can start as the result of an otherwise harmless cut or even vigorous flossing or toothbrushing in patients who are at risk. Less often, a fungal infection can lead to endocarditis, especially in people with compromised immune systems.

Who is at greatest risk? Healthy heart valves can fight off a bacterial infection, but valves that have been weakened by any type of valve disease, such as severe mitral valve prolapse, a prior case of endocarditis, a congenital heart condition or even a heart murmur, are vulnerable. Your doctor should be familiar with the protocol of giving antibiotics (standard antibiotic prophylaxis) prior to any invasive procedure involving the gastrointestinal or ­genitourinary tracts or dental procedures.

Two simultaneous “pandemics” are adding to the risk. The first is drug-use disorder, specifically the use of injected drugs, which can introduce bacteria that affects the heart’s valves—in fact, the predominant mechanism of death after overdosing is a cardiac infection.

The second “pandemic” is the use of implanted medical devices, even those that are, in and of themselves, life-­saving. Whether it’s a pacemaker, a replacement heart valve or a hip or knee replacement, all these devices leave you more vulnerable to infection because bacteria can adhere to the device itself and immunosuppressant drugs related to the procedure can hinder your body’s ability to fight infection. The more devices you have in your body as you age, the more infections you’re likely to have.

Endocarditis symptoms and warning signs. Symptoms, which can develop within days or weeks after the introduction of bacteria, usually are vague and may seem like the flu. You might experience fever, chills and night sweats that go on for weeks and persist or return even after you complete a course of antibiotics. Or you might have a wound that’s not healing. The infection may have started in a location quite removed from the heart.

The challenge—getting a proper diagnosis. Endocarditis is not always at the top of health-care providers’ lists. Let’s say there’s bacteria in your urinary tract from a urinary tract infection (UTI). If that bacteria spread through your blood to your heart valves but your doctor keeps treating you for the UTI without further investigation, he/she won’t find the ­endocarditis. It’s important to ask for the right tests, especially if you’re at greater risk for endocarditis because of any of the reasons listed on page three.

How endocarditis is diagnosed: Diagnosis starts with a blood test and cultures. Problem: Cultures need to grow for days to identify or rule out endocarditis—the time lost waiting for a blood culture to yield results can be catastrophic. And some labs won’t culture your sample for long enough to make the right diagnosis. If left unchecked and the bacteria have enough time to render one or more valves dysfunctional, endocarditis goes from a small problem that can be treated with antibiotics to a bigger problem that requires open-heart surgery to replace the valves.

Key to proper diagnosis: Imaging of the patient’s heart valves. At an endocarditis center such as the one at the Cleveland Clinic, imaging options include an echocardiogram (ultrasound of the heart)…a transesophageal echocardiogram, which involves inserting a scope through the mouth to view the heart…or a CT and/or PET/CT scan that uses radioactive material to see the exact location of the infection.

Proper treatment. If endocarditis is caught early, before there is any destruction of the valves, it usually can be treated with a four-to-six-week course of antibiotics. A second image of the heart will be taken after that time, along with blood cultures and surveillance, to make sure the infection has cleared and the heart valves are not damaged.

If valve destruction has already begun, the damaged valve(s) must be replaced to stop the infection. Once that destruction starts, it will progress from one valve to the next because they all sit next to each other and sometimes the infection invades the conduction system of the heart, requiring emergency surgery and pacemaker insertion.

Where you get treatment matters. Endocarditis that requires valve replacement is a very niche operation, and most cardiac surgeons have done it only once or twice in their entire careers. Doctors know how to treat blockages in the arteries, not diseased valves. This operation can be complex since there is tissue destruction and pus in the field as well as loss of normal architecture of the heart valves and chambers. Also, endocarditis often affects two or three valves at the same time, all of which will have to be replaced, and that, too, takes a uniquely trained and experienced surgeon.

Another challenge: Doctors at many medical centers believe that the blood must be cleared of infection with ­antibiotics before valve-replacement surgery. But this process can take years and may not ever be successful. At the Cleveland Clinic, that protocol was changed about 16 years ago—physicians there try to eliminate the infection by surgically replacing the valve(s) and sterilizing the blood.

It is crucial for someone who has had valve surgery in the past to seek out a specialized endocarditis center for treatment. Example: Jan Scruggs, founder of the Vietnam Veterans Memorial in Washington, DC, had had two attacks of endocarditis, including two open-heart surgeries with valve replacements, when a third attack threatened his life. His doctors wouldn’t operate a third time—a lot of surgeons view prior surgery as a barrier to operating again because scarring and other factors increase the usual risks of surgery. His doctors kept giving him suppressive antibiotics, and his condition progressively worsened until he was referred to the Cleveland Clinic team in 2019. A third surgery gave him his life back.

Today’s endocarditis care team might comprise five or more experts from various fields. An infectious disease doctor, who used to be the only one who would care for endocarditis patients, is the cornerstone and works alongside a cardiologist who specializes in valve or heart disease…a skilled radiologist who can order the right imaging and determine the extent of the infection…a pathologist to identify the bacteria…and, of course, a heart-valve surgeon.

Preventing endocarditis. Before any invasive procedure—even knee replacement or a diagnostic biopsy—confirm that you don’t have an undiagnosed valve problem. Your doctor can do this with a physical exam and by listening to your heart to rule out a murmur.

If you’re seeking an injectable treatment for a medical condition or cosmetic reasons, make sure it’s done in a medical setting by a medical professional—we’ve seen otherwise smart people develop endocarditis after getting questionable stem cell injections in motel rooms for example.

If you have a valve condition…if you’ve had endocarditis in the past…or if you have any device with metal in your body, such as a replacement valve, a replacement joint, a pacemaker or even the new sleep apnea implant, make sure that you get antibiotics prophylactically, meaning before you get any invasive procedure, whether it is dental work or a colonoscopy.

Also, attend promptly to any cut or wound, and take good care of your teeth and gums since oral bleeding makes it easier for bacteria to enter your bloodstream.

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