Living with Ebstein’s Anomaly

When mild, Ebstein's anomaly shouldn't prevent you from living the life you want to live, but there are things you can do to make sure your condition doesn't take away your ability to do so. Modern medicine and surgical techniques have improved the life expectancy and general prognosis for sufferers, but you can and should be an active, educated participant in your own treatment outside of the doctor's office too.

Ebstein's Anomaly – What It Is

Ebstein's Anomaly is an uncommon disease of the heart's right side that happens when the tricuspid valve that divides the two chambers there does not develop correctly. It ends up being further down in the ventricle than it should be, which makes for a weaker and smaller right ventricle. The tricuspid valve is supposed to have three parts, but with Ebstein's anomaly, one or more parts become stuck to the heart walls. When this happens, they don't move correctly, and blood may go in the wrong direction.

Some of the symptoms that occur as a result of this problem are swelling of the limbs and abdomen, problems with breathing, and an enlarged liver. These result from blood leaking and backing up in the rest of the body. Because issues with blood oxygenation can occur, since people with Ebstein's anomaly often also have a hole between the wall separating the two upper chambers of the heart, cynanosis can be a symptom. Blood clots can be an issue with Ebstein's anomaly, as the hole between chambers can allow clots to pass through and cause heart damage or even strokes. An abnormal heart rhythm is also a possibility, which can cause dizziness and fainting.

Severe cases may require surgery to correct the defect and replace or remove parts of the heart, radio frequency catheter ablation, or even a heart transplant. Symptoms can worsen over time, and when left untreated, complications can ensue so it is important to diagnose and treat it as soon as possible. 

Patients with symptoms that began at an early age are in more serious trouble, but for patients whose symptoms began after their first year of life, chances for a normal life are good when recommended lifestyle changes and choices are made!

Taking Your Medication

It is important to always take your medications exactly as prescribed, and always on time. This way, symptoms won't overwhelm you between doses, and the drugs will have the best opportunity to do their job right. 

Physical Activity and You

Unless your doctor has advised otherwise, it is okay and encouraged to be active! It's good for the heart and circulation system, so it's important for your health that you don't give up on the idea entirely. Be careful with the restrictions your doctor gives you and don't do more than you are capable of, but don't be scared of physical activity either.

The Importance of Regular Examination 

Keep an eye on your own symptoms and don't hesitate to get your body checked out if they seem to be changing or getting worse. Maintain a regular schedule of check-ups with your primary care doctor and cardiologist to make sure everything is happening as expected with your heart.

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Last Reviewed:
December 20, 2016
Last Updated:
May 25, 2017
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