Hi everyone with ASD or any congenital heart defect!

Well, keep reading lots of posts about problems post closure. Of note, healing for everyone is different no matter what surgery done. Please if you still have problems for 2 weeks or more after device closure or you get better and some ,all or new symptoms come back please please follow up! I guarantee open heart surgery takes longer to heal but have no experience in this so can’t say. I am almost 1 year post Amplatzer closure and became ill again. This was the easiest surgery I have ever had but first 10 days were awful with my old symptoms.slowly symptoms began to leave and than felt great. Like the old me before all the horrible symptoms came. I wasn’t even dizzy anymore. Than slowly by 4 weeks I started to notice weird things. Easy to say my heart was just adjusting and kept making excuses. Echo and bubble good but just kept getting worse. ER and hospitalized twice and got a diagnosis of orthostatic hypotension with some possible autonomic nervous system problem. Now I have my old symptoms and more so now I am seeing congenital cardiologist to hopefully solve problem. I also reached out to ACHD heart to heart. There are many like us out there. We live longer and all tend to be treated like shit until correct diagnosis is made. The key to success is to believe your own body. Yes anxiety can cause lots of problems but at some point we have to fight back. If you have a heart defect all the pills and stress relief in the world won’t solve the problem. The longer the symptoms go on the more possibility of complications. Always go to MDs with questions written down and if possible take a closely involved person. They may not take us seriously but if the second person reaffirms your complaints you may get better care. Signs are what MDs see, symptoms are what we feel. Everyone has various symptoms! We are all not alike. We all respond differently to medicines, pain, illness and more. We are individuals! Since I am not a doctor this is only my opinion but as an individual who suffered needlessly, I believe we must fight for our health. Thanks for reading this, Linda

Post Script: forgot to mention, please ask to see all test reports so the doctor can review with you at same time. I was often told test ok or basically normal and only heard normal. But when got copies of tests saw some abnormalities. If you ask for copies which by law you are allowed don’t wait til you leave office. Go over them with your doctor. Keep a list of tests done so you can review them together. Doctors won’t like this but I’m going to say it “stand your ground!” This will make appt. longer and maybe less liked by doctor, but what is better, keeping him happy or you healthy! Just another thought. And by the way essentially negative is a great way they are covering themselves tool! Thanks, Linda

I agree. A very wise dr once told me we will know our body better than drs most of the time. Key word is most. I believe we need to keep surgical reports, test results, medication lists…on hand and review them. The internet makes it simple to verify what the results are. We are our own best advocates. Education can and will help survivors live a better informed life.

To Karen P, Smart girl! I keep forgetting some of us are are much more computer literate and others, Great advice I wish I had thought of that. thanks Linda

I would encourage you to read my posts and push for a heart cath procedure. I totally agree about not knowing yourself better than anyone else. I am doing well even with my condition with good medicine. My Mom had the open heart surgery and that went very well for her. Her hole was huge though. The size of a fifty cent piece!