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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

How are people going years after having your operation?

Hi

Just wondering how people are going 1,3, 5+ years after their operations?

Thanks

Dkel

Hello. I am now 7 years post my second op which was trans-catheter repair using 2 small Amplatz devices. Immediate aftermath was not good due to complications (internal haemorrhage, later arrythmias - see other posts), but then a good recovery, back to full fitness and better. Four years post-closure i went into atrial flutter - a supra ventricular tachycardia - which was finally fixed by atrial ablation. This knocked me sideways for a couple of months with tiredness, but once fixed i was fine, off all medication except low dose aspirin which is optional.

my advice to everyone is keep a healthy weight and exercise at least 30 minutes a day if you possibly can as it will improve your physical and psychological wellbeing. (conflict of interest declaration - i am also a public health doctor)

Helen

Let's see, I'm almost exactly 7 years out. In general, doing REALLY well. Not in anywhere near as good a shape as I should be. Just had a checkup and everything is really good. I can do anything I want, basically. I had a 32mmx35mm repaired by pericardial patch via open heart surgery in April 2007.

I am 4 years post-op after a transcatheter ASD closure with an Amplatzer. I feel normal, in general. However, I still worry about having a foreign body IN my heart. I still wonder the long term effects of having a metallic device.

I am four years post open heart surgery. I've done 2 marathons and 4 Ironman Triathons since then. I feel great and carrying out my mantra of "living life to the full". I also wrote a book which helped me get grounded and realize what was important in life. (www.ellenliveslifetothefull.com). My recovery was like anyone elses I'm sure....painful, worrying and too slow but after a few months I was pretty much good to go. No further complications, my heart is still enlarged but I see my cardiologist yearly to make sure all is good.

It's been eight years since I had my closure and I am feeling great! The only problem I've had is I've had to stay on a beta blocker because it seems to regulate my heart and I think it kind of took away the anxious feeling of having a foreign object in my heart. I'm more fit and active now than I have been before this whole event. The day I found out I had an ASD I also quit smoking:)

Had the closure procedure on July 14 2011. My health has it's little challenges but they are due to my stroke that lead to finding my ASD. Heart wise everything is fine. Just had some tests done a few months ago and my heart is very healthy. :)

I'm less than a year out with my closure. I had it done right cath with an amplazter. Before my closure I was tired all the time, short of breath and just felt "junky, was on oxygen 24 hrs a day. Now I'm only on it at night.

About 2 days after my surgery I could breath much easier and the shortness went away.

My ASD was actually discovered during another cath for pulmonary hypertension to check the pressures in my lungs. As I was on the table watching my cath the pulmonologist told me "we just found a hole in your heart". Now we'll discuss what's going to happen later. After my cath I had a cardiac MRI done to see where the hole was and the size. Pulmonologist told me all the particulars and said she would refer me to a cardiac surgeon. Two months later I had my first consult and 2 weeks after that I had my closure in Sept 2013.

I can't say enough good things Duke Medical Center.

Hi Dkel:

Right now my prognosis looks good. As for getting off the oxygen completely I don't think that will ever happen as I've also got COPD.

My Cardio said he'll talk to me about that when I go back for my yr check up.

I'm nine years out -- no real issues to speak of. I found out after my surgery that a cousin had this same issue. He was healthy as a horse, a police detective, and a husband with two kids. He had a mild heart attack -- doctors were stymied as to why, until they found his ASD. Personally, I've had random weight gain, but that might just be me aging and working out less. ;)

To be brutally honest, I sort of forget I had the procedure. I can feel it EVERY now and then, which is more bizarre than scary to me. When the topic does come up, people think I'm crazy for not being more concerned about the whole procedure. I suppose I trust my doc implicitly -- he helped pioneer the device's use in kids. The recent(?) report by the FDA about tissue erosion due to improper Amplatzer sizing has me worried though. I came to the Internet, looking for answers. I've also made an appointment to have my device checked via ECG.

5 years after ASD closure at age 28. Last 2 days ago, I went to consult Dr. Dr said my heart is getting smaller back to normal size. Praise the Lord!! :)