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Heart Valve Disease Symptoms Often are Undetected or Dismissed

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An estimated 11 million Americans have heart valve disease (HVD), a condition that involves damage to one or more of the heart’s valves. Symptoms often go undetected or are dismissed as a normal part of aging, yet HVD can lead to serious heart conditions or even death. This makes it especially dangerous.

With HVD, a damaged heart valve disrupts blood flow by not opening or closing properly. There are two types of valve disruptions, known as stenosis and regurgitation. Stenosis takes place when a “sticky” valve does not allow enough blood to flow through. Regurgitation happens when a “loose” valve does not fully close and lets blood leak back out.

Each of the four valves can have regurgitation, stenosis, or both. The resulting disruption in blood flow translates to reduced oxygen levels, which may cause a number of problems. Common symptoms are shortness of breath, dizziness and fatigue, discomfort in the chest area, fainting, irregular heartbeat, and swelling in the ankles and feet. If left untreated, HVD can lead to major cardiac events over time.

HVD may be present at birth (congenital) or caused by cardiovascular diseases, conditions, or infections. Age is the greatest risk factor. Almost 10% of people age 75 and older are estimated to have moderate to severe HVD.

Another Silent Killer

Each year, an estimated 25,000 people in the United States die from HVD. For patients with severe aortic stenosis, the survival rate is about 50% two years after symptoms start but only 20% at five-plus years. Fortunately, valve disease usually can be treated with valve repair or replacement.

However, because people with HVD do not always experience symptoms – even if their condition level is severe – the disease may go undetected. Studies also show that those who do experience symptoms sometimes still consider them a “normal” part of aging. In this respect, HVD is similar to high blood pressure, which is known as a “silent killer” because people with that condition often are not aware they have it.

A recent survey of more than 2,000 adults in the United States found that, while over half have heard of HVD, fewer than one in four know much about it. Almost 30% of survey participants over the age of 65 say they know nothing about HVD. Another study showed that two-thirds of patients diagnosed with HVD had little or no knowledge of the disease.

The Reddest Possible Flag

It is doubtful that any patient appreciates the seriousness of undetected HVD more than Karen Hay, a Jacksonville, Ala. resident who recently was treated for the disease at the UAB Cardiovascular Institute (CVI). Hay, 50, says she was born with several heart conditions, but after childhood she experienced nothing that led her to suspect she had a serious heart disease.

“I’ve always had a few small health problems,” Hay says. “I’ve been a UAB patient since I was a child, regularly seeing a pediatric cardiologist when I was young and having some procedures done. But all that was over by the time I was 12 years old. I had been dealing with shortness of breath and fatigue, but nothing that I thought of as a red flag.”

It was in October 2019 that Hay encountered what might be called the reddest possible flag. She was recovering at Gadsden Regional Medical Center after undergoing knee surgery. Hay was about to be discharged and was consulting with a physical therapist when she felt her temperature rise and had trouble breathing. Her husband suspected that she was experiencing nothing more than stress.

“I’ve worked in the medical field most of my life as a lab tech, so I knew enough to understand that I was definitely not hyperventilating from stress,” Hay says. “I was turning blue. They couldn’t get my oxygen levels up.”

Hay was experiencing cardiac arrest, and as her condition grew worse, she began retaining fluid in her lungs. She was taken to UAB Emergency Department via emergency transport. Mustafa Ahmed, MD, director of Interventional Cardiology, recalls the seriousness of Hay’s cardiac event.

“When she arrived here, Karen was extremely critical,” Dr. Ahmed says. “She was blue and had almost no pulse. We actually wondered if we might not be able to resuscitate her. She was taken straight to the catheter lab and placed on life support. We had only seconds to get her on a heart-lung machine.”

Hay was supported by an extracorporeal membrane oxygenation (ECMO) machine, which handles the function of the heart and lungs. People who need support from an ECMO machine receive care in a hospital’s intensive care unit usually for only a few hours to days but may require it for a few weeks, depending on how their condition progresses. For Hay, it was a matter of repairing the damaged valve.

“Most people have three openings in the valve; Karen had only two,” Dr. Ahmed says. “We performed a valve replacement two days after she was placed on life support. Her response was amazing. She went home and now lives a completely normal life. She even looks much younger now than she did when she arrived at the ER.”

‘A New Lease on Life’

Hay agrees that she was in the dark about the seriousness of her condition until it reached a critical stage. But she says the procedure to repair her valve changed her life.

“Now I can work in my yard and do other activities without shortness of breath,” Hay says. “I’m taking one aspirin each day and a blood pressure regulator, and that’s the extent of it. Dr. Ahmed and the entire team took such good care of me. I almost cry when I talk about them now. Thanks to UAB Medicine, I have a new lease on life.”

Dr. Ahmed sees Hay’s case as the best example of the need to be more alert to symptoms that may signal a serious heart condition.

“Karen is truly the classic case of why people need to be aware of heart valve disease, Dr. Ahmed says. “You might say she’s the ultimate case. It shows that HVD can sort of quietly build up over years, even for someone like her who was treated for certain heart conditions when she was younger. That’s the danger of the disease. It gets worse over time until one day you face a deadly situation. For many people, that can be too late. Karen was extremely fortunate.”

Click here to learn more about how UAB Medicine’s cardiovascular experts diagnose and treat patients with heart valve disease.

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