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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

Recently found out I have an ASD. Looking for guidance

Hi, sorry about the long post but 5 or so years ago (I’m now 42) my leg started to swell so I went to my GP and he told me to go to straight to hospital and he would phone ahead. My blood pressure had gone up to 220/180, after and echo my cardiac output was down to 20% and my kidney output was down to 40%. After medication everything has seemed to return to what I thought was normal. While I was in their I was diagnosed with sleep apnea which I am now under treatment for. A year ago I went for a follow up echo that my GP asked for and didn’t hear anything back. On Friday I asked my practise nurse on my annual review if the scan was ok and she printed it off for me saying it was my body so I was welcome to read it but mentioned some times it’s can be not what you want to hear. On reading it, it appears that I have a small ASD but this is the first time I’ve heard of it. Now reading up but am quite shocked that this is the first time I’ve heard about it.

So many questions. I’m trying to get a GP appointment tomorrow to see what’s going on.

Hi Adrian77uk, so sorry to hear about your issues, hope you’ll find it helpful that there are many here as living proof that you’re not alone and it’s likely to work out fine. That said, totally get your shock & worry, been there myself. I passed out, & after several tests, learned I had an ASD, unbeknownst for 51 years.

Firstly, maybe if your ASD is small & in an ok place, it can be closed with catheter op, to insert a closure device, which I believe has a fast recovery time.

Secondly, get your GP to refer you to a cardiologist, ideally an adult congenital heart disease specialist. I found only they could answer my Q’s. In the uk, oxford + London (Brompton) are specialist cardio centres.

Thirdly, do you by any chance have medical insurance via work, that might help with speed of referral?

And re it not being mentioned. There are more adult ASDs than was previously realised, it seems, and it’s expensive to treat. One cardiologist told me that if they fixed them all, it would ££ cripple the NHS. So there may not be a massive incentive to put folks forward.

But I’d say, push for a clear diagnosis & a closure if beneficial. You’re young & so should get many years of benefit. If they do an MRI scan, they will see if you have a “shunt” and to what degree, and therefore if you’d get cardio & pulmonary benefit. (A shunt is blood going through the hole & ending up on the wrong side - if shunting to the right, then your right chamber may be larger than helpful, & there may be higher blood pressure in your lungs than is helpful, both leading to problems later).

Overall, I’d say don’t expect many answers from Gp, but insist on a referral, at least as far as MRI scan, as the echo can mistake the hole size.

Very best of luck - the cardiac folks are brilliant so you’ll be in good hands. Keep us posted.

PS Do ask Q’s here, I found many answers that way

GP is for digestive diseases. It would be a Cardiologist that specializes in congenital heart defects that would help you with your PFO.

While mine was very large, I have learned that any size PFO causes digestive diseases, migraines, Edema, TIAs (strokes) and fatigue in addition to heart complications.

I too have digestive diseases like gastroparesis, colitis, IBS, and on and on. Once they closed my PFO (ASD), my gastroparesis has improved (not cured). 9 other people in my Gastroparesis who had similar conditions to me also got checked for a PFO after me. They too had one.

Where are you located? UCLA Dr. Press and Dr. Ross saved my life.

A bubble echo or a bubble Transcranial doppler to detect how much is transferring from one side of heart to other and to the brain.

It can be fixed with a simple catheter surgery.

BTW. My husband’s work mate had a small one, too, and once she had hers fixed, she had more energy and better sleep.