Struggling to cope with recent diagnosis

recently discovered I have an asd with dilated right side also had prolonged qt after suffering with palpitations and dizziness (doctor always put it down to my weight) until I passed out and was sent for tests.i am also currently being tested for arrhythmia im on the waiting list for open heart surgery. I’m 31 years old I’m scared to the core that I have this problem although people keep saying you will be ok you’ve got to this age but all these issues that are now coming up keep making me think its the start of something sinister happening I cant help feel like I am living on the edge. how do I try to get my head around this and live my life normal again?

Welcome to the group, sjh85. This board has been a bit quiet lately, and I’m hoping that before long one of your fellow asd board members will reach out.

Meanwhile, make good use of the search feature on this community (the magnifying glass, upper right). Joining in on a few conversations (old or more recent) will send out messages telling people that you are here, and that will help get the conversations going too.

One of the reasons this is one of our quiet boards is that many people come here, scared witless, when they are first diagnosed. They hang out through the treatment phase and then tend to disappear. Why do they disappear? My guess is that they get on with their lives and they’re so busy living that they don’t have time to hang out here.

Best of luck, and hope to see you posting soon.


I think it is appropriate to be scared. I am a health-care provider that was diagnosed with my ASD at age 32. Even though I use the terminology and see difficult situations as mine was every day - it was still a very scary experience. I had transfemoral ASD closure and did not need open-heart surgery, but symptoms after surgery as a result of nickel allergy and the implanted device made life for a few years very frustrating. I was faced with the possibility of needing the device removed via open-hear surgery, which I ended up not needing - but the thought of it was distressing. Good news is I am back to my normal life. Actually, this event was a great wake up to live my life. Just a relatively minor procedure and condition (this is looking at and ASD and needed closure in the realm of possible cancers, major surgeries, etc.) made me reevaluate the places I was spending my time. I refocused on my family, friends, kids, etc. (most important things in life) and started stressing as much and spending time on work, etc. Good luck!

I had similar symptoms and the implant helped tons. Although I have recently discovered I’m allergic to it and need it out. I should have had the open heat surgery to stich the hole closed not done the implant. 25% of the population has a hole of some kind and 21% don’t need to do anything. Basically get the allergy test… if negative you can still develop allergies later… so get the open heart. You’ll feel better inside of 6mths

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I was also diagnosed in May with ASD and was recently told it would require open heart surgery. It is extremely scary to think of having your chest cracked open. I am just starting this process and have a lot of thinking and talking to do yet with my doctor and a surgeon. I am trying to get more clear information about OHS vs. going in thru the side. My cardiologist is pushing for the OHS option.
Anyone who can give details about recovering from both procedures would be greatly appreciated!
Thank you.

Welcome, Gtpd
While you’re waiting for responses from other members, you might want to use the search tool (upper right, blue band, magnifying glass) and key in “open heart”. I think you will have lots to read. When you come across a thread that really interests you, do post on the thread. When you do, the others who commented will receive a notification of what you said. It’s a great way to breathe new life into an old thread.
Seenie from ModSupport

Thank you. I will do that.

I COMPLETELY understand. I was diagnosed last month and just found out I’m basically missing my Atrial wall. I’m 51 and my “hole” is approx. 4cm. Being that it is that large my Cardiologist told me I need OHS and now I’m just waiting for a call from this new team for a consult and to schedule it. In the meantime I’m falling apart emotionally and mentally…LOL! They told me not to Google to much but of course I did and scared myself and my husband even more.

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Hi sjh85,

Welcome to the board. I understand you are worried as this is unexpected. The procedure (its not a surgery really) is quite easy to go through as it is non invasive. Recovery is easy too and quite honestly doctors encourage us to live normal lives. Its a year since i was treated - it was discovered by chance at 46/47 for me.My condition improved a lot as so many symptoms are gone. I used to consider tgem normal. Like restlessness in my left arm. I live a near normal life now, aches do happen but i guess its part of life now. Check for nickel allergies before the procedure please.

Do reach out if you need some comforting.


Hi Sjh85, only found out myself recently I have ASD and prolonged qt too. I’m due to have a cath device rather than ohs. Just wondered it everything went well for u and was there any complications with your long qt? Think we’re very unfortunate to have both! I’m on beta blockers and am not concerned really just want the closure done now and get on with my life. X

I was recently diagnosed with ASD and also have multifocal atrial tachycardia. I am scheduled for robotic surgery on April 18 to fix the ASD, I have a nickel allergy.
I had to research quite a bit to find someone local to do the robotic surgery. The surgeon is going to try and do the Maze procedure at the same time to fix the tachycardia. It’s been helpful to read other people’s experiences especially the nickel allergies. I think I’m coping ok right now but as it gets nearer to surgery, we will see how it goes.

Hi sj85,

I too recently found out that have a sinus venosus asd, and enlarged right side of the heart at 45. Was having difficulty breathing and dizzy spells for 4 years and finally they figured it out. You bet it’s scary, don’t think it would be normal not to be the least bit scared when finding out there is a problem with your heart. I was also told that it will require OHS to repair. Again totally scary. Having the support in this forum and being able to talk to people who have been through the experience helps. :slight_smile: