Congenital Heart Defect in Adulthood

[JoanneS89]

Hi all,

I have recently started the ball rolling in getting diagnosed with a congenital heart defect (or two!) which I was blissfully unaware of for 35 years!

I'm still waiting to see a specialist, and on an MRI, but initial scans are indicating an atrial septal defect and a bilateral SVC.

Just wondering what anyone's experiences of either of these defects are, and what treatment you received so i can try to get my head around it!

Thanks

[10gingercats]

I had probably had an atrial septal defect for years before it was discovered when I was in my early 70's The docs closed it quite quickly...one day in hospital... as it was thought it had caused a small embolism just prior to its discovery. Other heart things appears but it seemed a miracle i had lived,worked and travelled widely and had a baby etc,etc. and I am still here at 86.None of it had been noticed all over the years.So look on the bright side as it may all look a lot worse than it really is.

[SlothOnSpeed]

Hi Joanne. I can only speak to an ASD. Diagnosed at 41 after an eye stroke. It was closed and I had an uneventful recovery. Really depends on how big it is and your overall heart health. I am on Xarelto for life .

[PadThaiNoodles]

I don't think bilateral SVC causes any issues; it's just an indicator that you may have other heart defects (like your ASD). But I think the ASD is the only thing they'll want to fix.

[Ems89]

Hi Joanne, I was also diagnosed with an ASD in Feb this year at the age of 35. I was advised to have it closed to prevent any potential complications later in life. I had it closed in May and was an overnight stay in hospital and home the next day.

[lindainglis]

hi i had a asd closed 10 years ago never new i had i am 68 years old closed with ohs surgery never looked back

[Skiffrower]

I think your comment that you were " blissfully unaware" is significant . My daughter having known about a congenital heart defect all her life suffers from anxiety due to the worries and impact of all the hospital visits. So be thankful for those unaware years. It is good your condition has now been found and others on this thread have given reasons to be reassured. Best of luck

[JoanneS89]

Thanks so much for all the replies 😊

It's very reassuring to hear positive stories around having ASD closures performed without any complications.

I haven't been told yet what course of action they want to take, but I imagine they will want to do something, as my bilateral SVC is leaking and mixing blue and red blood together in one of the left chambers.

I'm a bit nervous of potentially having to have surgery as I've never had any surgery before

[fishonabike in reply to JoanneS89]

it is understandable that you feel nervous about having surgery, but it would only be offered if it is necessary

this may be hard to accept as you have lived with this , symptom free all your life - surgery to repair the defect would reduce the chance of you having complications later in life, so you might want to ask the doctors about what these might be, to help you understand

good luck

[PadThaiNoodles in reply to JoanneS89]

While my defects were valvular, I was on the "watch and wait" program for the better part of 20 years. Because I was asymptomatic they only decided to operate when I started to get LVH because the valves were leaking too much.

I'm nearly 6 weeks post repaired mitral valve and new (mechanical) aortic valve. It was my first major surgery as well, but they took good care of me....

[LadyZ13]

Hi Joanne, I was the same, ASD discovered after I fainted (stress, not heart - but they did a load of tests and found my heart was enlarged and went in to it....) at the age of 38. I had a very big hole that ultimately needed open heart surgery to fix. I felt like one of the unlucky ones as so many people's can be fixed through an amplatzer closure these days, but while, like you, I was totally new to surgery and I was quite apprehensive, I was well looked after and absolutely fine. My surgery was last year and I've just got back from morning boot camp, fully back to pre-surgery fitness.

When I got my diagnosis I started a blog about it. I documented absolutely everything. It kept me sane! The link is in my biog if reading it might help you. But happy to answer any questions, just shout! And try not to worry, however hard that sounds. Once you start exploring you realise there are loads of us out there, and something the consultants see a lot of and understand well. It'll be OK.

[Sugarplum81]

I was diagnosed with Atrial Septal Defect 2 yrs ago..it is 10mm they said they would scan again in 3 years.. which is next October 2025. It was discovered incidentally after having a CT scan following recurring Angina attacks before I had stent fitted to LAD. I'm still having alot of chest pain and get lightheaded and breathless. Anyone relate or why some get the hole closed or wait? I'm in my early 40s with ischaemic heart disease and Vasospastic Angina/ Coronary Artery Spasm...It does take alot to get head around and being affected daily with a family to look after is tough.