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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Shortnessofbreath

Hi Everyone… 8 months post closure…

Mildly dilated right ventricle, ejection fraction mildly reduced, dlco reduced, and heterogenous v/q.

Anyone else so short of breath even post closure. I literally cannot take a deep breath in. I shallow breath all day long… I think I may have figured out the problem but am hoping to find patients with similar issues to prove my theory.

Thanks guys!!

Hi Ayl291, I dont know how I missed your post but now that I have seen it I must share my experience with you.

Yes, I get breathless a lot now and i notice it happens when I am anxious, stressed, walk a lot, climb a few stairs, try to exercise (well thats a no brainer I suppose lol) talk a lot and at times even in meetings I find I must capture a moment to get my breath. The most alarming experience for me was when I was having a snack with friends and found myself breathless and could not keep up the pace of eating (though it was not a contest the snack under study was a mouthful snack we have in India and it is assembled quickly, served and is meant to be eaten immediately). Please do share your theory as I have undergone tests to find the cause of this breathlessness and all tests are clear and my cardiologist believes it could be because I am over weight. Another cause could be elevated sugar levels which make the heart pump faster is what I learnt recently. Regards Ashish

I must also add that your description of breathlessness sounds quite different and I cant understand it that you do shallow breathing. I think I just stop breathing and have to take a series of short breaths to catch up and then settle into a normal breathing pattern for some time till the process needs to be repeated. Regards Ashish

What tests have you had performed?

X-ray, 2d echo and pulmonary. Sorry for the late response.

So no pulmonary function test with dlco and lung volumes, v/q, or cardiac mri?

Yes I did a pulmonary test as you describe but no cardiac mri .

Pulmonary function with dlco, and lung volumes?

What about a v/q scan?

nope, not heard of it v/q scan either

I think your missing some major tests that would could help explain your symptoms. Are you in the usa?

I am in India. I guess thats it some tests are not being thought of and suggested. I will run that by the doctor

Yes,

I would ask for

Pulmonary function ( not just spirtometry but lung volumes and dlco)

Cardiopulmonary exercise test ( cpet)

Cardiac mri ( cmr)

ddimer to rule out clots ( blood test)

And chest ct with contrast to rule out clots and other lung or pulmonary vascular abnormalities.

Good luck, let me know if i can help in anyway.

Here in the usa… over at columbia and cornell they offer virtual second opinions, they will relook at all your findings including images.

Its 800.00.

Let me know if you want that info.

Ali

Thanks. I will keep this in mind. I think it is worth considering

I have similar symptoms, at a loss. Saw a surgeon at Weill Cornell— said he was not familiar with complications. Do u have any advice?

Hey Bliss,

Who did you see at Cornell?.. I was seen there too… Jonathan Ginns.

PM me please let’s discuss!!

Hi,I am also facing breathing problem after my ASD clouser.And become extremely tired after some walk or going to upstairs.I am so much disappointed now.I thought everything will be ok after ASD clouser.Looking for some advice.

Join the club lol.

Mines been almost 4 years now.

How long have you had dyspnea?

Hi ayl291 Just for Three weeks. Three weeks ago I was fine.But now my life is becoming hell.What do you do to manage your symptoms?

I dont think mine is device related. I think in your case I’d get rescanned tee to make sure the device has not moved.

Toady I went to Doctor and he showed me my Device is perfectly attached and said everything is ok.But my heartbeat is very fast like 127 bpm.He gave me beta blockers.I am afraid that beta blocker may increase my breathing problem.