@A MyHeartDiseaseTeam Member, you bring up a great point and a sad one. I, too, have a rare congenital deformity (Ebstein's anomaly), and you are right, no one ever talked to me about what to expect as I aged. Turns out that was because they really did not know. So many doctors focus on babies and children, but they grow up and need care.
Some Facebook groups help, but again, they mostly focus on babies. So, what I can tell you is that, yes, things will progress: the arrhythmias will become more frequent, and the CHF will worsen. However, that said, you have a lot of control over how you feel and how quickly things get worse. I am 73 now with severe Ebstiens, and I am doing better than most! My advice: Keep your weight down, watch your diet, exercise as much as you can, get as much restful sleep as you can, and stay positive and hopeful because science and technology are on your side. See if you can find a specialist anywhere who understands your congenital problem and how that problem affects all of the other parts of your body. I use myself as an example, when I was born, they did not know what was wrong with me, and today they can repair this defect in babies, and hopefully prevent some of the other problems that are a result of these defects. I just want to say I am here for you, and we have a group of us who have congenital heart defects. Why not join us? ❤️

PS My doctor is starting a department dedicated to adults with congenital heart defects. I will make an announcement when I have more information. I am in Atlanta, and it would be great to know if you have anything like this in your area.

Mentioned Users

A MyHeart...