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Hello i'm new to the group


#1

Hello everyone, i’m 42 yr old and only found out i had an ASD when i was 38 after my 2nd pregnancy, when i had palpitations. After TEE and MRI they discovered a 460mm hole, basically the entire upper chamber. I’d never previously had and inclination of it, i have a very physical job. Has my OHS 2 years ago and everything was great, buy now experiencing palpitations, shortness of breath and light headedness. Has anyone else had this problem? Is it atrial fibrilation? Thanks


#2

460 mm or 46?

Did you have it closed??


#3

460mm or 4.6cm in old money. Yeah it was closed with OHS in aug 2012. I had an mri and that showed the cardiologist the size of the hole. In march 2012 my cardiologist was going to try and close it with device, but in theatre under TEE they decided a device wouldn’t work.


#4

Sorry not 2012 that’s when i started with palpitations. I had my op in 2014. Have been ok up until recently.


#5

Hi, I just had my surgery last july end 2016, I am 47. I am more or less ok but do tend to get breathless a lot of times, but repeated tests (2 d echo and x ray) reveal everything is ok. So I have come to accept this breathlessness as part of my life. I think it might also have to do with me being a little overweight though I am not obese.

I have posted similar questions here too, you might want to read my detailed explanation of my symptoms so you know you are not alone.

Seems like this closure is the best remedy and these things (breathlessness) are side effects. If you feel that no it is atrial fibrillation then speak with the doctor to rule it out as at times we feel things differently from what they really are inside.


#6

After mine i pretty much went back to life before i had the palpitations, until recently. Went to my gp and he gave me a preliminary diagnosis of paroxysmal atrial fibrillation, have had bloods done and having an ecg today before a follow up gp appointment directly after. Then if my bloods don’t turn up something else he’s gonna refer me to cardiology at my local hospital.

If you’re breathless, could that not be AF too? I remember before my op having palpitations that just got worse and worse. Every specialist i saw told me they could detect nothing, until i spoke to my surgeon and he said it could be the hole. Perhaps go back and see if there’s something they can do?


#7

Hi, i did not know you responded hence the delay from my side. I did go to another doc he ran his tests did an ecg and 2d echo all normal so there was no AF. This was in Jan early this year. I did an Xray a few weeks ago and it came clear. So i guess i am slightly overweight hence the breathlessness also anxiety. Am really not keen to go to a doc and be told all ok as i feel breathless and pain too. Some discomfort and pain exist.

I cant sleep on the side of my heart. Is this normal?


#8

Hemodynamics .ust Change… did your pressures post closure get measures?


#9

Not sure i follow but my gp put me on hypertension tablets as it is high.

Can you rephrase your thoughts? Thanks


#10

Your flow through your pulmonary vascular system changes post closure bc
you had such a large shunt before…

Did you have the pressures in your pulmonary circuit measured aftern
closure? It is not the same as systemic pressureses.

Did anyone tell you that you have pulmonary hypertension?


#11

Hi, now i understand. The cardiologists did a 2d echo and ruled out pulm hyptnsn. He says all is fine with me and i can lead a normal life even do weight training at the gym. No circuit meaaures were taken for me. They did not explain that the flow changes post closure but said everything will be normal.

This is my second cardiologist both are super top and celebrated . So i dunno what to make of stuff now. Hence i keep posting here to see how others feel post closure with the device


#12

Yeah… before i got sick I was dealing with patients… so weird being on this side lol

I started with 3 bilateral pes and it triggered my tachycardia and dyspnea… but even after they cleared my symptoms persisted. So, it took 2 years but we finally figured out I had an ASD that enlarged due to the pulmonary embolisms.

Got it shut transcath 5 weeks ago and still feel awful. Extreme dyspnea and tachycardia. But no pulmomary hypertension. My entire team is a bit baffled.

So I got in contact with an extreme specialist in Sweden. We went through my case and its simply damage throughout the pulmonary vasculature that has to take time to heal. He said usually about 6 months…

How bad are your symptoms?


#13

Hi, sad to hear about how difficult the journey has been for you. Your case sounds more complicated than mine. You say started with 3 bilateral … (not sure i follow) and then it led to an enlarged ASD?

I hope you have a great recovery and dont have any problems after that.

Most of the times i try to not notice the breathlessness i experience by attributing it to stress, slight obesity, but at times i do get concerned that there might be something more. Then i get restless and want to investigate further.

Since the last time i took medical advise i came to the above dead end, so i dont feel confident enough to go about it again and find no solution to the breathlessness.

My case went undetected for so long that I dont know what to expect or say. In 47 years i did undergo a hernia operation at age 17 , and a couple of time i have been unwell and docs did put their stethescope on my heart and did not hear its murmurs!

I guess my body will allow for things to be discovered at its own pace?

There are days the breathlessness is severe at time but it does exist and now i notice i make efforts to breathe.

I hope you never have to deal with breathlessness. Its alarming.


#14

I have extreme dyspnea ( breathlessness). It is actually my worst symptom. It is truly unbearable I feel like I am drowning. It awful. It has been 5 weeks since surgery and it had continued. My dlco is low… have you had yours tested via pfts? I am in great shape so it not due to being overweight. I dont believe thats why you have it either… i think thatsban excuse for doctors to avoid your symptoms. You need a cpet and full pfts with dlco done!! How does your breathlessness feel? For me its like I cant seem to suck in ane my lungs dont expand. I also have extreme chest tightness.


#15

Hi, i just realized you are using medical terms for shortness of breath. You are probably going through what i am. Here i was hoping you would not feel breathless.

What can one do ? And will this lead to a reduced life span? I am ok with that, then i would rather enjoy myself now and not worry toomuch about a future i will not have to see.

How does this impact health and mobility in time? Any idea?


#16

I had written my earlier response yesterday but it did not get posted till after your last response.

Your case is really severe, i feel short of breath most times and i seem to 'huff and puff" when i am really out of breath. Most times i see myself making an effort to breathe. A lot of nights I wake up sometimes gasping for breath, this happens in the day time too when i feel as though i am gasping and not breathing. I guess it feels like exhaustion?

Additionally, i cant sleep on the side of my heart, it hurts. Even during the day it hurts randomly, i feel like something is poking me,
Does this happen to you?

I dont understand dlco and pfts? I did echo, xray and tee test which was horrible

You have to get this breathlessness treated. If you are in good shape, does that mean you do weight training? I go for walks but my pace is not as brisk as i want it to be.


#17

I used ti be a marathon runner before I got sick. Pfts are pulmonary function tests. There is one test in particular that tests the diffusion of O2 to from your lungs into your capillaries. It is called the DLCO Mine is reduced. I have a feeling yours will be as well bc you have similar symptoms. What device did they place in you and how long ago? I think it may be that our pulmonary vascular systems had some damage from the asf shunting left to right. It may need time to heal. The question is how much time. Ive been sick 2.5 years now. Im 29 and cant do anything. This is so depressing. Are you located in the US?


#18

Hi, i met my gp yesterday and he put me on meds as my bp is high. He says it could be the cause for breathlessness. My heartbeats are normal as he tested yesterday. I go again tomorrow for a check up and if the bp is high then he might change my meds. He does not seem concerned about my lungs.

They put an amplatzer device actually which is nitinol based.

See this is why i am here looking for answers. Since you have reduced O2 flow how much longer before it heals?

I am based in Bombay


#19

It can takeba long time. Is he saying your pulmonary pressure is high or just your systemic. In my opinion your systemic blood pressure should not really make you short of breath unless you are having issues with the left side of your heart. I think the ASD is more likely to cause dyspnea.


#20

Hi ayl291,

To be quite honest i feel knowing i had or have whatever one calls it is perhaps the source of some anxiety. You see for me these pains and discomfort are really disturbing as i dont know what might happen next. I feel i am being dramatic and do not like it. I dont like drawing attention when nothing can be done about it and i have to live with it.

How are you doing these days? Long time no news from you.

Ashish