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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

ASA with ASD

Hi everyone, I’m new to this sort of thing, but felt I needed to talk with others who have had similar issues.
I was diagnosed three years ago with a cardiac bridge and we have been managing it with medications. In April of this year I had two episodes of right eye blindness, which put me on a seven month journey to my newest heart diagnosis.
I was admitted to the hospital for work_up of a possible stroke, all tests were negative. Then sent to Opthamologist and determined not a direct eye issue, so referred to ENT for right temporal artery biopsy. Biopsy was negative so then referred to Neurologist.
Neurologist ordered several CT angiograms that also came back negative. He wasn’t satisfied so sent a request to my Cardiologist to do a trans esophageal echocardiogram and a cardiac monitor.
With my current heart diagnosis I had had several echos and heart caths. This time it was discovered that I have an atrial septal aneurysm and atrial septal defect. I have now been scheduled for an ASD closure and because of the aneurysm I have been placed on Plavix.
Can anyone tell me what to expect with having this closure done? We are attempting transcatheter, since the ASD is small.

Rebecca
Hi Rebecca. Sorry to hear you’re going through all this. I had my ASD closure done in early October, so my post-closure experience is somewhat limited. In any event, as for what to expect, I found the most challenging thing was simply being nervous about the procedure (and ignoring all the information I couldn’t resist reading online :slight_smile: ) . The procedure itself was pretty uneventful. I was slightly sedated and don’t remember all that much. Immediately afterwards, I was required to lay down for approximately 4 hours and I was discharged the same day. For the first week post-closure, I was told to avoid lifting anything heavy (including my kids), and to avoid rigorous exercise for 2 weeks, which I did. Immediately after the procedure I did have a few days of faster than normal heart rate, but that went away within a week. I still get what appear to be PVCs (quite often), but otherwise I feel great at 2.5 months post-closure (exercising regularly/running and breathing easier). Happy to answer any questions you may have, so please feel free to ask.

Thanks for replying. I found I too was unable to not read everything I could get my hands on and it just increased the nervousness. I’ll update after I have the procedure.

Hi Rebecca,
I saw your post and seems your situation is similar to mine. I have had “palpitations” and some arrhythmia for years but not much showed up even after 2 cardiac workup. Things changed after I also had blindness in my left eye after a very severe headache. Rather a long story, went to ophthalmologist who sent me for A carotid scan then a follow up with my Primary Doc. He sent me straight to the ER for work up as a stroke patient.I had one of the typical issues that lead to a stroke but I was diagnosed with an Atypical TIA. A clot had apparently gone through the artery in my eye and caused the blindness. I saw a neurologist who sent me for a bubble test with echo cardiogram that showed a hole, a PFO. This was followed by A TEE that showed a large opening between the chambers of my heart. I have had a successful closure. If you’d like to know more you can find my post here under Success Stories. I know this is all overwhelming and I wish you the best. The advice I would give is to do your homework and be your own advocate.

Hi all,
I, too strangely had a blindness episode in my right eye the day after I had an eye doctor visit for a yearly check up. Back to the eye doctor I went. Diagnosed with a TIA. Then I went to see my general practitioner which then sent me to the cardiologist which set off a series of tests; carotid, bubbles, TEE, brain MRI. Low and behold, I was diagnosed with an ASD between the chambers of my heart. I never did find out how large the hole was. So, on June 20, 2019, exactly 6 months ago today, I received the Amplatzer Occluder to patch my heart on Thursday and went back to work on Monday doing VERY little the following week. No more headaches and I sleep better and awaken better every day. I am still on Plavix (which I hate!) until I go back to the cardiologist in February. I haven’t done any serious exercising at all due to my trepidations regarding my heart because sometimes it unexplainably feels weird inside, but maybe I’m just afraid to push it, maybe it’s all in my head. It definitely psychologically plays with my mind. I push it pretty hard at work every day delivering sheetrock. My plans are to ramp up my physical activities (like running) after I get off the Plavix, but February can’t get here soon enough. Overall, I feel good and I feel blessed for all that I’ve gone through. I have a great family that I love and that depends on me. My advice to you is do whatever you need to do and don’t slow down(but only for a week or so afterwards). You will be fine. These are routine procedures nowadays. I think it’s natural to obsess a little bit because in reality it’s a serious procedure to go through. Say your prayers, give it to GOD and you’ll be okay. Best of luck to you.

Hi Rebecca,
I had different experiences (open heart surgery, to close ASD in the U.K.) but hope some of this helps.

  • a tiny number of people here unexpectedly found they had a nickel allergy and wished they’d got their doc to test them, as they had a device reaction

  • cardiologists have different specialties, ensure your diagnosis is from expert doc (I needed birth defect, ie congenital expert for ASD, despite being 50yrs!)

  • heart & vessels are really complex & hard for docs to see from tests - in U.K., a cardio MRI gave doc best view, & he spotted another vessel to fix. Echo was less helpful - but mine was not oesophageal, so probably yours was better. That can’t have been fun - brave girl.

  • I think a couple of folks here had catheter device and many years later, found it detached/ stopped working or something?? I got impression they wished they’d gone for full patching (open heart)? Moderator may help you find their posts. It’s a hard choice, full surgery aggravation vs. outcome longevity. I didn’t have choice (hole size & position) but think I’d have gone OHS anyway, to get robust fix. Recovery has been a right pain, but I measure it against hopefully living 30 more years. I’m sure there’s also more to it medically, but thought I’d mention. It’s only been a couple of people who I think said this though, so don’t worry.

  • I empathise with your nerves. I’ve found the biggest challenge is mental / emotional. Maybe activate your full support network, for people to listen to you, with empathy. I also benefited hugely from counselling / therapy, for dealing with the emotions and stresses.

However, all of that said, I have no doubt you’ll come through this and be fine. It has become routine (for them, even if not for us!) and they are skilled. And you’ll be stronger, emotionally AND physically, after it. Wishing you all the best, keep us posted :heartbeat:

Had my ASD closure on 12/20/2019. Things went very well and now I am in the recovery period. So far, the only issue I have is being extremely tired, but I think that is normal. Taking it one day at a time. Thanks for the encouragement. I had an Amplatzer device used for my closure. Turns out my hole was larger than they thought, but still able to close with catheterization.

Great news and continued good luck, rest well :slight_smile: