Hello - New diagnosis - lots of questions, very worried

Hi everyone

I’m sure there’s millions of post like this on here, but I wanted to say hello and introduce myself.

Long story, but i had some breathing problems a couple of months ago (felt like air going in was being limited), so went and saw a respiratory specialist. She referred me for a few different scans including a cardiogram - All this time I was running regularly and did a 10k three weeks ago - Turns out i have an ASD. Years ago another scan said i possibly had a PFO, but it wasn’t made out to be anything serious. Now i’ve been told its an ASD.

The scan was done by a technician and I’ve not yet seen a doctor (other than one who stuck her head in and said ‘yeah, looks like an ASD’ then left). The technician said it’s an ASD and i’ll probably need surgery as the right side of my heart is larger than it should be.

I’m now terrified, waiting for a cardiac referral having no idea how serious it is, what i should or shouldn’t be doing and what the future holds.

I’m a realist, but i’m 37, was pretty active and fit and now have this cloud hanging over me. If anyone’s been in a similar situation I’d love to hear from you and hopefully hear that there’s light at the end of the tunnel and it’s not a death sentence.



I did asd operation at 37. I am very well now after 9 months since asd robotic operation. So it s not the end of the world. Be positive!

Rob - sounds like you are in pretty good shape as I thought I was as well when my ASD was discovered after major AFIB attack. Was 67 years old at the time with a lifetime of sports, activity, full military career followed by work with an engineering company that took me all over the world. Pretty surprising diagnosis I must admit. I also have an enlarged right heart side…maybe thats an ASD characteristic…have to ask my Doc. My ASD is very close to the Aorta which made closure a bit tricky. Options: do nothing; OHS; CATH closure. After discussion with my cardiologist…who is very good by the way, he felt that CATH closure was doable so decided to go for it. There was no rushing into this; was 4 mos after the AFIB incident that we did the closure so please don’t feel this is a crisis situation.
Am now 8 mos post closure & doing great. Have been a few problems since the closure but I attribute them to the meds I was taking after surgery…seems me & blood thinners don’t get along well. Started out with Eliquis which was not tolerated well, switched to Plavix more tolerable but still side effects. At 6 mos after surgery stopped the Plavix and have been doing great ever since. Now I just take an aspirin & some Omega 3s every day.
Recommendation: Find yourself an experienced cardiologist with numerous ASD closures under his belt & the best Heart Surgery hospital in your vicinity…stack the deck in your favor. It’s all a bit unsettling but if you do these believe everything will be good.
BTW, have read that some of the ASD closure hardware that are on the market have side effects, I have the Amplatzer Occluder device, seems to be a pretty good product, no issues so far.

  • just one other thing, when you are taking the post-op meds, some other seemingly non-issue foods, etc, can cause you problems. For example; I was taking Metoporol & if I took a multi vitamin even several hours later I would get chest pains and feel like crap. I only mention this so you know that if you are feeling fine and all of a sudden start feeling bad, there is probably a connection between the meds and something you ate or are taking.
    All the best, JJ