Asd closure waiting for repair

hi im 26 yr old male waiting for asd closure to be repaired by going up groin through vein like umbrella opens cover hole in heart, sure its called catheter procedure. they said heart is enlarged, think its the left side over pumping extra due to hole. just wondering is there anyone waiting on it or has it repaired cause feels like im the only one goin through this and its very scary, i feel anxiety and other symtoms like shortness of breath, heart palpatations and like it skips beats. doctors said i should have operation soon as i went back to hospital twice after having breathing problems, feel like i cant get enough air its scary. i was diagnosed a year ago and still shocked.doctors said i was born with it and amazed was never found before only a few months ago. was put on waiting list but was put up list cause over having problem persisting. just cant wait till its done. love to hear from anyone out there our just support, thanks for reading.

Had my 22 mm asd closed 18 months ago. I was 44 and too can’t figure out if it was that big that they never heard it. I was tired and had your same symptoms. It took a trip to the hospital while back East with my daughter to finally get my cardio to push forward. I feel a lot better. I still have a rapid heart rate and missed beats but it’s so much better. Good luck. You will feel great. Don’t be alarmed if you get strange headaches afterwards for about two weeks. It’s pretty normal.

Hi Andy I had my closure at 66 just 18 months ago. Be glad they found the problem earlier than mine. Always wondered why I could not keep up with the rest of the family, no stamina. I developed arithmia in my early 60s and they found the 23mm hole. My heart was enlarged as well. I feel better now, but wish they found the problem much earlier. All the best with your procedure.

Hey Anthony!

I'm 22 and I had my ASD closed by catheter closure in July. I also had anxiety after I found out and I know how you feel about not feeling like you have enough air!

I can relate to pretty much everything you have written! I waited 8 months for my operation and honestly I feel great now.

I've made some YouTube videos about my closure etc. I was watching the one I made before my closure and I was so scared and anxious compared to how I am now. If you want to check them out...

Hi. I too, was diagnosed with an Atrial Septal defect. The device that was implanted in my heart is called the Amplatzer Occluder. This device was approved by the FDA. It’s not an umbrella. Do you know the name of the device?

hi sunflower, ya mine is called amplatzer occluder to, just the way the doctors described it they said when it goes into the hole it opens up like an umbrella to cover the hole or something like that. were you diagnosed when you were young or older and have symptoms?

hi laurull, thanks for the reply feel bit better now, that i am not the only one goin through this, rang the hospital said that i should have it done in july, might be in may if dey can fit it in, cause they put it down as urgent. so cant wait to get it done and hopefully the device will be right size as the hole is bit bigger than normal like, very nice to hear you feel great hope i be the same when its done tis like a nightmare now. il check out your vids thanks for your help.

I rang my cardiologist so many times in annoyance of waiting and in the end they put me in because someone cancelled. I got a call on the thursday and had my operation on the monday. You can wait for months and months and then have your closure within days! Good luck and I hope you don't have to wait too much longer!

hi tami thanks for your reply makes me feel bit better, worse thing is the shortnes of breath feels like your goin mad and gona die you be sick and tired of it. great to hear you feel a lot better now. should have operation done in june so please god the device fits in cause doctors said its bit biggger than normal so they wont know for certain until they get in. when did you get your symptoms like shortness of breath and palpatations?

hi Tina Heij Barendse :

thanks for your post. Its amazing how they never found it sooner same as mine, you think all the trips to the hospitals and that before we were diagnosed that they would have picked up somthing, even our own doctor when we had something small like cold or whatever an they listen to ur heart and that like. nice to hear you feel lot better now.hope i will feel the same. nice to hear theres other people out der with same problem cause i thought i was the only one its scary. best of luck

Hi Anthony, I know exactly what you're going through. I had the same exact symptoms you have, the shortness of breath, feeling like you're not getting enough air and the palpations and just the anxiety of it all. I had the umbrella procedure through the groin, too. I know isn't it amazing that we were all born with this. Actually I think everyone is born with it and it's supposed to close when you're an infant but for some of us it doesn't. You will feel so much better after you have it repaired. All my symptoms went away:) The only thing that lingered for a bit was the anxiety of having that thing in my heart but after awhile that went away too. I know it's scary especially when you're dealing with a vital organ like your heart but you will be okay. The procedure itself is not bad, so don't worry about that. The waiting is the worst part. This is a very supportive group.

anthony said:

hi sunflower, ya mine is called amplatzer occluder to, just the way the doctors described it they said when it goes into the hole it opens up like an umbrella to cover the hole or something like that. were you diagnosed when you were young or older and have symptoms?

Hello Anthony and welcome to a really supportive group , Last year, at age 41, I was diagnosed with a 1.1cm ASD. Like you the right hand side of my heart was enlarged. Whilst my family, friends, colleagues and doctors were all really supportive, I felt very alone as I'd never heard of an adult having a hole in the heart - only babies and wondered how I got to 41 until I found out! It's great to be able to communicate with other adults going through this. I had my ASD repaired in September 2013 via catheter procedure through the groin with an Occlutech device in London, UK. I was home from hospital the next day and at my 3 month check-up the right hand side of my heart has shrunk back to a normal size and the heart tissue has already grown over the device. Amazing stuff. The worst part in all of this is definitely the waiting and the build up to the op. Waiting and having further tests and making the decision to go through with it. Since closure I definitely have a better propensity for exercise - in the past walking up steep hills I'd get breathless but just put it down to the fact I was climbing a hill - now I climb the same hills in a breeze with no breathlessness and think oh, so this is how it should be - I thought it was normal the breathlessness! Anyway, I hope this helps. Any questions just shout. All the very best, Sarah