I am new here...Any one have condition ASD [hole in the heart]

[Bella450]

I am lady over 70 and have had this condition diagnosed 7 years ago, it is unusual and I wonder if any one in my age group has this?

[WeezeMcCheese]

Hi Bella,

My understanding is that the condition is actually incredibly common, but tends to be diagnosed much earlier in life. Mine was spotted within the first couple of years of my life (if not birth, I should ask my Mum!) and I was operated on at age 7.

Hopefully there's someone here in your age group who you can speak to about it.

Can I ask purely out of interest; has the hospital let you know whether you'll require surgery? Have they put you on any medication?

Hope you're feeling okay!

Louise

[Bella450 in reply to WeezeMcCheese]

HI Louise, No cant be repaired, understand may not survive surgery...I have good and bad days..taking meds and living in hopes.

[harriet_ashworth]

Hi Bella,

My husband is not quite your age group, but is 50 years old and his particular hole in the heart was only discovered last year when he had a stroke! Completely out of the blue for a healthy, fit (he actually works as a ski instructor in the French Alps in the winters) guy with no idea that this condition existed. But you are right, apparently all of us are born with this ‘hole’ in the membrane separating 2 heart chambers. As I understand it, it heals completely once we are born in 3/4 of us and in the remaining 1/4 it is discovered (because of blue skin pallor, fast heartbeat etc) in babies and children!

Not so with my husband - and you, presumably?

Luckily his stroke was minor and treated promptly; it was the echocardiograms as a result of it that showed the hole. (In his case, instead of ‘Atrial Septal Defect’ ASD it is referred to as PFO patent ovale foramen - but I think we are talking about the same thing).

At the moment - since his stroke, in Dec last year - he has been taking daily medication (anti-platelet clotting / blood-thinning tablets, just low-dose aspirin now) and we are told that there is no urgency to have the PFO-closing procedure. Our local hospital does do it, but possibly ‘not for adults’ (on the NHS anyway). We have seen one consultant and are waiting to see another to find out if this is true.

All rather stressful, but we are just living day-to-day with all this new knowledge, incredibly grateful that his stroke was so minor (he was back working as a ski instructor 5 weeks later, no speech problems or any other after-effects other than fatigue)

Do you mind me asking how your ASD was discovered? (There was no reason at all for my husband’s to suddenly ‘declare itself’ as it did! In his adult life he has run marathons, spent years ski-training at high altitude etc etc, has been fairly strsssed - yet none of those things led to the blood clot or embolism that passed through the hole in the heart to cause a stroke).

I guess you are now quite well? I am very interested in hearing more . (We know of only one person older than my husband, whose hole was discovered the same way, when out of the blue he had a stroke). He then lived happily on aspirin for a few years and then had the PVO closure procedure when he was 60, and is completely recovered).

All the very best to you

Harriet

[gal4God]

I’ve always had a vsd (hole in my heart) had it repaired as a baby and many more times COD wiv a vsd holes can re form. I just get thru it but it’s not easy at times.

[BigT2013]

Well I'm 53 they only discovered I had a hole in my heart when undergoing tests for a mitral valve repair so found by accident had been there since birth but no symptoms.

Both my valve and hole recently been fixed via open heart surgery 😷

Some people like me or yourself can live with the hole with no issues.

You may only be getting issues now due to your age or like me they found it by accident.

[White227 in reply to BigT2013]

My mum has just had surgery for ASD and PAPVD- this was 8 weeks ago, she is suffering from bad zig zag vision and heavy head, now waiting on MRI scan to check for micro blood clotting, she is on beta blocker and now a low dose of aspirin. Would it be ok to ask how your recovery was following surgery. Thank you

[Hidden]

I am 55 and 18 months ago had a heart attack out of the blue. None of the usual indicators applied app they went digging. After a bubble test and a TOE they discovered I have a hole in my heart (a pfo) and had unknown to me since birth. At the moment they want to hold off and see if they can treat it medically rather than surgery

[White227]

My mum has just had surgery for this in the summer- she is 61. She also has PAPVD- all only diagnosed 9 months ago! Never even picked up before!