Hi All, my wife has recently been diagnosed with an ASD large 26mm hole with left to right shunt.

We are being told that OHS surgery is required as the hole is too big at this stage. She hasnt had typical symptoms but experienced the following:

Dull chest pains Random episodes of dizziness and pale lips Tingling feeling in arms and fingers Iron deficiency

If there is anyone who's has done OHS at her age for a similar defect can you please provide some feedback and advise. The prospect of OHS has us both scared and I would like to gain some person experience stories, advise, findings anything really

Welcome to all the new members who just found out you have an atrial septal defect!

Here is an article about a woman who discovered hers when she was 51.

For those who have known about their ASD for a while and/or have had a repair, please share your experiences here for the ones who are joining us.

Don't forget, we have user flairs in this community that allow you to self-identify your CHD if you wish. (If they're not working, please let me know!)

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hi im sharing here as im not truly informed as to what to expect im a 19yr old male who was diagnosed with pulmonary valve stenosis my heart valve has been starting to fail since i entered highschool but they did not replace they said because i was young and if they put it in while i was growing it could cause problems the valve i have in now was put in when i was around a year old now, my systems are severe pain swelling of my heart blood and oxygen leakage, tiredness and inability to do basic tasks due to the valve failing my heart has swelled to 1.5x the original size i have surgery in 4 days and i have alot of family waiting on me im asking here to get some real life experience on similar issues as i want to be able to reassure my family and look forward to post surgery.

I (32) recently had a TEE to confirm if I have a CHD after some disagreements between 3 cardiologists following a TIA I had in March. The TEE confirmed I have a grade 2 ASD, sadly. What is a grade 2 though? I tried to Google it but can't find out what it means and the report doesn't seem to say how big the ASD is.

Hi!

I'm a 55 F and was diagnosed with ASD - 12 mm hole, and will soon get a trans catheter closure. Google research revealed that onset of new migraines and arrhythmia are common. If there are people who got catheter ASD closure, what has been your experience?

Coping as an Adult Living with CHD

Wednesday, May 1, 2024, 7 p.m. – 8 p.m. EDT 

Presented by: Rachel Steury, MSN, APRN, FNP-C, Vicki Freedenberg, PhD, RN, and Patient Panel

Adulting can be hard; adulting with congenital heart disease can be harder. Join us to talk about stress and coping and learn about ways to use mindfulness-based techniques such as meditation, yoga, or breathing techniques to improve coping skills. We’ll even lead the group in some meditation practice!

While ACHA Wellness Wednesday events are recorded and available to watch on-demand, the opportunity to participate in the Q&A is only available during the live event. We urge those with a strong interest in this webinar's subject or who have a question to register and attend the live event, as your question may be one of the ones answered.

Click here to register for this webinar

I just had the results of my echo back and I’m a little freaked out. Since the rest of my heart is seemingly in great condition it seems this is the only explanation.. I also have an incomplete right bundle branch block. I am 28F. Any similar experience?

What's going on in your life that's good right now? New job? Got into your dream school? Kids being cute? The person in front of you in the drive thru line paid for your treat? Good vibes only! Complaining, venting, and anything remotely pessimistic will be removed by the moderator and/or downvoted into oblivion. There was a venting thread posted literally 10 days ago - if you're having a bad day, go comment there and let the rest of us be happy.

When I asked my cardiologist about heart failure a while ago, it felt like I couldn’t get a straight answer. Was I in heart failure? How do you diagnose it? When I did some research online, I couldn't find much about heart failure specifically for CHD patients. So, being a journalist, I set out to report and write my own guide. Here is that guide, with info on symptoms, diagnosis, treatment, mental health and additional resources.

https://theheartdialogues.substack.com/p/congenital-heart-disease-heart-failure

If you’re interested in more like this or want to support my work, sign up for The Heart Dialogues, my free newsletter about life with CHD. Thanks!

Hi there , I have a CT angiogram hopefully coming up this week but I am very concerned as I've had shortness of breath on exertion for a few weeks now along with chest pain , I had a blood troponin test and ECG the other day which were both fine but I'm concerned I'm gonna get worse before I get to my surgery date which is still yet to be determined , any advice would be welcome

30F preparing for my first appointment with an adult CHD cardiology specialist. I don’t have my full medical history but have deduced an aortic coarct and a septal defect repaired with OHS at around 3 months old. I have been experiencing increased frequency of palpitations recently. Any suggestions for how best to prepare for this initial appointment?

Was found that I have asd apparently it's small and doctor says I can have a good exercise with out much trouble. But he is recommending that I use baby aspirin daily. I'm worried about taking it due to the possible side effects of long term use.

Estilo de Vida Saludable para el Paciente Adulto con Cardiopat\u00eda Cong\u00e9nita

Miercoles, 17 april 2024

Este webinar\u00a0presentar\u00e1 los aspectos principales\u00a0para un estilo de vida saludable en pacientes adultos con cardiopat\u00eda cong\u00e9nita, incluyendo:

1. Dieta saludable
2. Ejercicio
3. Estilo de vida saludab

El Dr. Jorge Alegria es especialista en cardiopat\u00edas cong\u00e9nitas en adultos. Actualmente trabaja en el Sanger Heart and Vascular Institute / Levine Congenital Heart Center en Charlotte, Carolina del Norte. El Dr Alegria es originario de Concepcion Chile.

Pulse aqu\u00ed para registrarse

Aunque los mi\u00e9rcoles de bienestar de la ACHA se graban y se pueden ver a la carta, la oportunidad de participar en las preguntas y respuestas s\u00f3lo est\u00e1 disponible durante el evento en directo. Instamos a quienes est\u00e9n muy interesados en el tema de este seminario web o tengan alguna pregunta a que se inscriban y asistan al evento en directo, ya que su pregunta puede ser una de las que se respondan.

I just had a chest ct and they found this. I have a left to right shunt. I am 30(F) and my anxiety make me super terrified and my mind thinks the worst. Can someone give me a little info about it? Medical care where I live is crappy. I have not even seen my PCP for a referral because all these appointment times are ridiculously long. Will I have to get surgery? I am a mother of 6 am so worried about dying on the table or having a poor outcome somewhere. Whether it be surgery recovery or afterwards. Everything I find google researching on my own is downright terrifying.

I'm awaiting the procedure via catheterization to close my ASD. Mine is 6mm, 1:7 and right to left shunt. I do get lower O2 saturation readings of 93 however if rested goes up to 96/97.

I'm extremely active and a lifelong gym/fitness enthusiast. Testing has shown no significant stenosis or other issues. I found by experience that cycling on a lifecycle on a hill type profile greatly reduces fatigue symptoms of ASD.

What physical changes/improvements have other people experienced post ASD closure?

Hi all; has anyone had the same valve replaced twice? I got a pig tissue valve replacement in 2020 & now my doc wants to do a homograft because the pig tissue valve is pressing on an artery & apparently this is the best fix. Not really looking forward to a second valve replacement within 4 years. 🫤 Has anyone been through this or something similar? Wondering how common it is & what the recovery is like a second time around.

Did anyone else feel the earthquake on the east coast? It actually brought up a lot of feelings about my heart. I wrote a little essay about it: https://theheartdialogues.substack.com/p/earthquake-nyc-heart.

Would this be one of those moments where my life forks into a before and after, from mundanity to tragedy in a morning? Mainly, the thought that crossed my mind was, man, I am not prepared for this. ...

This was odd. I am an inveterate planner, always gaming out how things will go wrong and making contingencies. I think a lot of it has to do with growing up with a heart condition. I’ve never known a life where the “worst case scenario” hasn’t already happened. I was always aware that something—some big thing—could go wrong.

If you like it, you can sign up to get my free newslettter, The Heart Dialogues, about living with CHD.

I recently was diagnosed with a large PFO through a tee. They also found that my right ventricle was mildy dilated. My cardiologist wanted to send me for a cardiac ct to rule of ASD. I just got my cardiac ct results, haven’t spoke to my dr yet but this is what they say:

Anomalous coronary artery: absent left main LAD has an anomalous posterior take off from noncoronary cusp. Left circumflex states possible separate origin from the right coronary cusp with retroaortic course though not visualized in left atriventricular grove

Of course this freaked me out. I went down a google hole now I’m pretty sure I was born without a left main coronary artery. Is this dangerous?? There’s so many things about it causing sudden cardiac death and i’m a little freaked out. Any insight would help or even explanation of CT

Sometimes you just gotta vent, right? This is the place to do it! Bad vibes only. If you've got good things going on in your life, go make your own post. Let the rest of us wallow for a few minutes.

Hey guys, I’m 21M. I have had an ASD since birth ( doctors were aware of that from my early childhood ). To be more concise I have Secundum Atrial Septal Defect ( 4mm ). Is it something I should be concerned over, because my cardiologist seems pretty chill about it.

Please share your knowledge. Thank you.

(I'm pretty new to Reddit so I apologize if I'm doing anything incorrectly...)

Hi all, I guess I just want to share my story with people who might understand and I'd really appreciate some encouragement and kind words.

I've been dealing with awful health issues for over 5 years and my doctors are now thinking I have a hole in my heart, so I'm getting a bubble echo done in the next couple of weeks.

It's been a frustrating journey. A lot of things had been chalked up to my weight and anxiety, so I wasn't taken seriously for a while, and then when I finally was, my doctors were pretty negligent (I feel) because they went as far as to run invasive tests on me, such as a right heart cath for possible pulmonary hypertension, but never ran fairly basic tests, like the bubble echo.

I did have a couple echos done in the past, but they weren't the bubble type. I'm so nervous and sort of excited for the test because if I have a hole in my heart, this is FIXABLE! I've literally spent most of the past few years thinking that I have POTS and functional neurological disorder and that I would have these awful, awful symptoms forever.

Some of my symptoms: shortness of breath on exertion, feet get cold and toes turn blue, legs swell and calves hurt especially on exertion, chest pain and tightness, bending over causes SOB and chest pressure, chronic pain, and probably a ton more I'm forgetting.

I was having what were thought to be functional neurological disorder (FND) attacks where I'd have trouble walking and needed to use a cane, but my doctor recently found out through an MRI that I've been having lacunar strokes.

Hence the scheduled bubble echo.

I'm feeling hopeful for the first time in a while. As awful as it probably sounds, I hope I find out that I have a hole in my heart. Because then I have a high chance of being okay again. I would love to just take my dog on long walks and hike with my partner. These things haven't been possible for me in so long, so I'm really hoping they can be soon enough.

Thank you for reading.

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Has anyone on here had the surgery I’m 20 male and have moderate tricuspid regurgitation really bad anxiety about dying young from this if anyone on here has had the surgery can you smoke weed after your in good health again after surgery

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Join the Adult Congenital Heart Association as we walk for the more than 2.5 million people living with congenital heart disease (CHD) across the country. We’re here to empower adults to take an active role in their cardiac care, to educate parents on the lifelong specialized care their young child will need in the future, and to support young adults through the transition to adult CHD care.

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What's going on in your life that's good right now? New job? Got into your dream school? Kids being cute? The person in front of you in the drive thru line paid for your treat? Good vibes only! Complaining, venting, and anything remotely pessimistic will be removed by the moderator and/or downvoted into oblivion. There was a venting thread posted literally 10 days ago - if you're having a bad day, go comment there and let the rest of us be happy.

I was born with a CHD and have a very prominent heart murmur. I recently revisited a cardiologist after about 10 years (27 y.o.) and he suspects a VSD due to the sound of my murmur but the echo did not pick up the hole. The echo showed mild tricuspid regurgitation and RVSP 59mmHg. Left ventricle volume overload and mildly enlarged right ventricle. I am having a 3D heart CT next week and I’m terrified. Any advice would be appreciated. (Note: I stopped seeing a cardiologist in middle school as I was told at a young age the hole was small and catheter patch would be preventative, not mandatory but I am also overweight now and not as active)

Hello! I'm reporting a guide to heart failure for people with congenital heart conditions, and I need your help.

• What questions do you have about the topic?
• If you're in heart failure, would you be willing to share your experience?

Here is the post where you can leave a comment or send me an email: https://theheartdialogues.substack.com/p/heart-failure-chd-experiences

Details: The guide will be published in The Heart Dialogues, my free newsletter for people with CHD. This is a personal project, but in my professional life, I'm a longtime journalist, bringing some of my skills to CHD topics. You can also sign up for the newsletter! Many thanks!

Sometimes you just gotta vent, right? This is the place to do it! Bad vibes only. If you've got good things going on in your life, go make your own post. Let the rest of us wallow for a few minutes.