Hole in the heart confirmed

[LadyZ13]

Hi everyone, happy Saturday, hope you're all bearing up and keeping warm if you're in Blighty - it's Baltic here today, but bright.

Today I'm fishing for experiences with Atrial Septal Defects. I had a letter on Monday from the consultant that requested my MRI which confirmed that I have an ASD which accounts for the enlargement of the right side of my heart. It will 'almost certainly ' need surgery to close it.

I got Googling and scared myself! Bad idea.

Cousin Katharine the Cardiologist could only tell me what I kinda knew, that they'll hope to be able to close it with the groiny-pokey-umbrella / amplatzer thing, but she also explained that if the hole is at the edge of the septum or awkward in another way it might mean OHS.

Assuming it can be closed, what then? What are people's experiences of this? Does the overloaded side of the heart 'recover', or is it just alleviated a bit and buying more time before it begins to fail? I'm terrified the damage is done and my heart is now not going to be able to give me a lifetime of service. One of the Bad Googling readings said that ASD patients often don't live beyond 50 which I was low point... I've had no symptoms whatsoever, and it feels like a ticking time bomb.

What can you lovely folk tell me?

Thanks in advance x

[10gingercats]

I had a hole in the heart and had it closed in 2010 .I was in my 70's....now 84 and out and about and pretty much fit as a fiddle. I was told my hole had probably been there since birth but I had travelled the world,lived in other countries, had a baby and my heart had seemed quite normal. They did not pick it up during pregnancy!Then I began to feel very tired for months on end, had a TIA, small embolism as well so it was decided to close the hole very quickly. Mine was strait forward as your cousin described and done through the groin and a little umbrella type gadget closed the hole .It was done under sedation with no problems.I was up and about with renewed energy the next day. Find out from the docs. what type you have and be guided by them.Mine was done by a specialist team ...nhs.. in Oxford.

[LadyZ13 in reply to 10gingercats]

Thank you 10gingercats (great name, by the way!) - that's encouraging. Were you told that one side of your heart was enlarged at all? And what has the follow up been like since surgery - do they consider it all done and dusted, or are you in for checks ups from time to time? And did they tell you the size of the hole at the time? Thanks again for sharing.

[10gingercats in reply to LadyZ13]

Follow up was 6 months later .Nothing further but I understand that is normal .I cannot remember the size of the hole but not huge. They wanted to close it because the thinking was a TIA or an embolism may precipitate a large stroke.I already had Afib but was taking Warfarin at the time, now on Apixaban.I may well have had an enlarged heart. I have one now but they did not seem to have worried about that re. surgery. They did think the closure was necessary in view of the TIA out of the blue.I am /was slim and do not smoke or drink.

[Yumz199725]

I was born with a hole in my heart few other issues which probably contributed to needing heart surgey at a day old I don't remember anything obviously sorry this isnt much help but one bit of hope I'm still here 25 years later! Hope your op goes well I'm sure you will be fine ❤️

[Silvertail]

LOL, I love your description of the groiny-poky thing. I have a PFO and ASA (atrial septal aneurysm) which were not found until I was in my seventies. My cardiologist says about 20-25% of the population has a PFO but it's not found until an autopsy. Obviously, mine can't be too much of a worry because my cardiologist said he'd only repair it if I wanted to scuba dive. He also said he wouldn't have a piece of metal put in his heart and he wasn't going to put metal in mine.

[LadyZ13 in reply to Silvertail]

That's interesting Silvertail, I wonder if it's an especially small hole? Or whether it's not enough of a payoff to repair based on other factors. Did the cardiologist expand on his aversion to metal implants in the heart? I know it can increase the risk of clotting in cases of metallic valves, but did you hear about other risk factors?

[Silvertail in reply to LadyZ13]

LadyZ13, he didn't say why he was against it, and I didn't think to ask as I had a lot of questions for him that day, but he is an interventional cardiologist who does heaps of research and I see him at a major teaching and tertiary referral hospital for heart and lung disease, one of the best in Australia. Nothing is said about the size of the PFO, its just mentioned in my records and echos and there is a shunt going from left to right (or the other way round). It's probably because it was only discovered so late in my life during a routine echo, and they thought it hadn't given any trouble, so why fix it.

[Markyboy47]

Hi I was born with an ASD and only discovered at age 44. Same as yourself the right side of my heart was showing to be enlarged...I went for the keyhole surgery but my hole was an ovel shape and couldn't be fixed with the little umbrella thingy 🙂 I went on to have OHS and have made a full recovery (I am now 48) After 6 months I was called back for another scan to be told my heart was back to normal size and all valves pumping oxygen as they should normally.

[LadyZ13 in reply to Markyboy47]

Oh Markyboy, thank you so much! This is amazing to hear, a return to a normal size is such a brilliant outcome and I hope one I could expect too. Must have been a bit of a journey with two surgeries but totally worth it. So grateful for you sharing this, have a wonderful day.

[Markyboy47 in reply to LadyZ13]

Also had 2 stents fitted Inbetween but that's a whole different story lol Yes it certainly has been a journey and hopefully your asd can be repaired via the keyhole route and you'll come out the other side fighting fit as I am now. Very best of luck to you and don't hesitate if you have any other questions

[LadyZ13 in reply to Markyboy47]

Thank you Mark, I really do hope so. I've had no symptoms at all but a heart murmur was picked up during some other investigation. While cardiac exploration was ongoing I have been told to avoid HIIT training, weight lifting, pregnancy... And I'm really really hoping I don't need to wait for the repair before I can ski as that's never been problematic before. I was out for a 5km run in the cold this morning as felt no ill effects... Any insight into exercise advice or lifestyle changes would be amazing as I'm trying to figure out how it might effect me medium and longer term.

[Markyboy47 in reply to LadyZ13]

I wasn't told but after my ASD was discovered I stopped running and gym going out of fear especially when my cardiologist told me I could collapse at anytime while out running. Bit strange considering I had ran multiple times without any ill effect... It'll be a shock to the system when you have to go for cardiac rehab and you're back to walking pace and lifting under 5kg weights but it's for your own good :)This is based on full sternum surgery though if it's keyhole your recovery will be much quicker

[LadyZ13 in reply to Markyboy47]

Oh, I know all about the fear! I'm watching my Fitbit like a hawk and trying to avoid Peak Zone like it'll hurt me, when I used to push myself before and have been joyfully active my whole adult life. I feel a tight panic in my chest all the time but know my heart is behaving normally - I'm putting it down to stress (heart surgery and unexepected job loss revealed to me on the same day). I asked the BHF nurses about skiing and they said it would be a bad idea, but that was when PVS was still a possibility - seems the MRI has ruled that out. Heath scares really show you how much you took all of this for granted!

[Markyboy47 in reply to LadyZ13]

Yes the belter I was told was after I told her i was a keen long distance runner at the time and had not long completed my 3rd half marathon was told if I went any longer and full marathon level I would end up in an ambulance! Didn't put on a pair of trainers back on until rehabOnce you're out the other side hopefully you'll get back to all your fun activities:)))

[SinbadCFC]

Hi LadyZ13. I had my ASD closed in September this year (by the way I'm 68). They attempted closure through the groin but the closure device failed to hold so the next day I had the hole repaired with open heart surgery (or the old fashioned was according to my surgeon). My ASD was 30mm at its largest point.My surgeon said that i didn't have enough heart tissue for the device to hold and it fell out.

Although I struggled with recovery in the beginning, I got through it and Im well on the way to full recovery with the help of cardiac rehab and help at the gym.

I was told that the right upper chamber of my heart was/is dilated, however its too early to tell if the op has had any effects on this. As I say I feel good and have had no post operative issues.

Try not too worry the cardiac team will take good care of you.

[LadyZ13 in reply to SinbadCFC]

Thanks for sharing your experience. I had heard that in the case of holes nearer the edge of the septum they might need to go to OHS, so this bears out. I'm very glad you've come through it well and are now feeling good again!