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

Finally scheduled for ASD closure and tricuspid repair 9/10

Finally got a second opinion from the Cleveland Clinic and have decided to have
ASD closure and tricuspid repair there. They are able to do beating heart repair. Don’t know if minimally invasive is possible yet. The cath closure failed so the device has to be removed too. I am terrified of waking up on a ventilator. Ever since I had the pulmonary embolism and couldn’t breathe I have a horrible fear of having MRIs or any test where I am enclosed and can’t sit up to take a deep breath. I can’t imagine having a huge tube in my throat and machine breathing for me. Don’t know if sedation will work. Believe it is necessary to make some attempt to breathe on my own. Any advise would be appreciated. Thanks

Hi Sallie,

I'm not the one to give advice on any of this, but I've heard nothing but good things about the Cleveland Clinic. They must have eased your mind on some level for you to have chosen them. I hope others can talk indepth to you about this, I just wanted to offer my support and high hopes that you will come out of this a brand new person!

Wishing you the very best,


Hi Sallie,

I had open heart surgery to do almost exactly what you will have. Mine had to be open-heart because the ASD was right next to the valve. and both were repaired. I woke up with a breathing tube inside me. But it did not bother me much at all (likely helped by the meds I was on too) It was removed a few hours later, and even the removal process did not bother me.

Hi Sallie,

I will be sending good thoughts your way! I hope all goes well for you!

Dear Sallie,

So sorry to hear that you have been readmitted to the hospital. Surely this is the very last place you want to be, but listen to me, they would not keep you there unless this was absolutely necessary, not anymore!

Glad to hear that you are healing and gaining endurance, that is wonderful news! Hopefully they can get everything else stable and keep it that way, so you can get out of there and return home, and begin to live life as it is meant to be lived!

Try to get into the mindset that you are improving and will continue to, and know that this hospital stay is almost over! I'm pulling for you sister!

Sending my best your way,