Hi! It’s been over 7 years since I’ve had my ASD surgically closed via open heart surgery. A year prior to surgery, I had a stroke (CVA), which ultimately, led to the hole in my heart. I just want to know if anyone else still deals with issues post-surgery? My heart races, sometimes it doesn’t seem to be beating at all. I still pass out or near-faint, or sleep for days. I’ve been to the doctors and no one can explain these to me. I’m healthy otherwise. I’m just frustrated!
Please also know that the stroke happened when I was 29. ASD repair took place when I was 30.
I had my closure by open heart 5 years ago, I still get flutters, jumps and odd beats of my heart, I feel faint or light headed quite often too, I also get an occasional sharp pain that feels like something is catching inside and my sternum cracks and clicks and causes me pain. I too had 2 strokes at 35 and then discovered I had a 2.5cm - 3cm hole with poor lower margins so OHS was my only option. I also have been told I don’t need follow ups with a cardiologist and haven’t seen anyone medical for over 3 years, I just live with it…I was told I had a residual small shunt but no one has ever checked to see if it has got worse, I am also on clopidigrel for life which means I bruise like a peach! Still find it amazing how many of us are diagnosed so late in life.
I am one year past my surgery and I still have issues. I have the heart racing and palpitations. I never had these before my ASD surgery. These came after my surgery. I went to see multiple cardiologists this year but all of the doctors have reported that I have a "perfect closure".
I also get much more fatigued than I was before surgery. I don't have the oxygenation issues that I had - my oxygenation is now at 100% thanks to the ASD closure. But now I get tired very easy. I was a runner before my procedure but I have given up running - I feel like I have the flu for days after I go workout.
I am lucky that I can breathe and my heart functions but it is not as strong as it was 2 years ago. I am only 42 so i am disappointed that my health hasn't improved more.
I understand your frustration!!
I am only weeks out from my OHS, so I cannot speak to you having symptoms so far out. But, I will say that the symptoms you describe are what initially sent me to the Cardiologist-which led to an ASD diagnosis.
What does the cardiologist say?
Are you able to be physically active?
What is your blood pressure like? Orthostatic blood pressure (taken when sitting and then when standing)?
I hope you can find some answers because I cannot imagine feeling this way after all you've gone through so that you DON'T feel this way.
I am 52 years old, and only had my ASD diagnosed last year after several visits to my GP over the years and to A and E with what I was told were 'panic attacks' and anxiety.
The hole was 3cm and was closed in Oct 14 with the Amplatzer device. I am still getting alot of flutters and odd beats, also the occasional racing of the heart. I have slightly more energy than before closure, but still get very breathless when going up the stairs or walking up even the slightest elevation.
I also had 'ablation' treatment to my heart 8 months before closure to treat Atrial Fibralation which I have been told has left the Pulmonary Veins to my lungs slightly narrowed. I have been told I will have follow up for life by cardiologists at the hospital.
From the information I have read on ASD's I understand that the earlier they are fixed the better the long term out come. If left for years I think that is when they go on to cause strokes etc.. I am very lucky I never had a stroke, although by the time it was diagnosed the right side of my heart was enlarged and I was suffering the effects of 'heart failure'. I only wish it had been found when I was first diagnosed with anxiety at about 35 years of age. I am lucky it was found when it was though or the outcome could have been far worse.
Hi @LadyRBBB62 Thanks for sharing and I know this is an older post but I’d like to see if you’re still out there. I am 34 years old and had my 2cm ASD closed with a Gore Cardioform device about three weeks ago. I had been getting the odd palpitation as well and just this week had to go to the ER twice with Atrial Flutter. This had never happened before. Both episodes lasted about 2 hours. They had to give me an IV injection of a beta blocker to handle the second episode and flip me back into normal rhythm. I am obviously concerned as I hope this is not going to be a permanent problem.
So I saw your post and was wondering if your symptoms resolved on their own or if yours required intervention. You are indeed very lucky that noting worse happened in the time that your ASD was undiscovered. It’s kind of like doing vertical rock climbing and getting to the top only to discover your safety line was never attached!