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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

Post open heart surgery

I found out in June of 2017 that I had ASD because after so many doctors and tests, one wise pulmonologist did a bubble study and found the hole. I am 65 and healthy. With surgery I should be good for many years. Without it I would continue to decline and become more debilitated until my heart just stopped.
I had my open heart surgery on Friday. I had to have two patches placed at the top of my heart by the incoming arteries. All went well and as expected.
24 hours later I was up walking with very little assistance and was moved to a private room. I had no pain from surgery but did have 3 migraines over the weekend. I was also nauseous but don’t know if it was from the migraines or oxi codon I was on. My mouth was very dry. Drank lots of water. Had no appetite. Slept well.
I was able to get in and out of bed by myself. Use the bathroom by myself. Monday my appetite returned and I ate normally. Had chest rads several times. All was good.
Had an echo Tuesday to check patches, everything was good and I was discharged.

I was horrified to go thru this and have several months of healing ahead of me but it is amazing how it went. This is my 3rd day home and I am getting up and down. Moving around. Doing stairs. Eating, using my computer. Any pain I get is in my neck and shoulders not my chest. It is of course very sensitive to touch. They use Dermabond now instead of stitches or staples. After healing ( up to a year) the scare should be minimal.

As horrified as my family and I were, it was so much better from all aspects than I could have imagined.

I will update as I heal.

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How is your dyspnea now, improved?

Wonderful news! So glad you’ve come through this so well. I went in on January 5th to have pfo closure. They weren’t able to do anything because the shunts are not in the heart! I’m now facing open heart and I’m scared to death! Hearing your story helps tremendously

I was ok when I was at home or even work if I wasn’t too physical so of
course I am not active right now. I’ll tell you in a couple months

Keep us posted :wink: and good luck!!!

Mindygirl. Sorry you have to go through OHS. I was horrified too and so
anxious. It’s no fun looking down at the huge incision in your chest, but
it was so much ‘easier’ than I had anticipated. Stay positive and believe
you will get through it well.

Hi,
Its very good and comforting to hear your recovery is going well. My husband is 47 years old and is diagnosed with ASD of 20mm with enlarged righ heart. We are advisedto have OHS and I am very nervous about it. I am worried whether his enlarged right heart would be a problem. Please advise us if you also had similiar condition. Thanks again for sharing your recovery and helping people like me to get lots of hope in dealing with ASD !!

I don’t remember what the size of my hole was, but it sounds like a very similar situation. I had right side enlargement and pulmonary hypertension. I had OHS in January to repair the hole, which was at the top of heart. Everything went as expected, no surprises. I was up walking 24 hours after surgery. I was in ICU 24 hours and went home on day 5. It was much better than I anticipated.

Sleeping was the hardest the first month. Laying on your back is OK, put I can’t sleep on my back so I turned on my side and had to get comfortable each time. The pain was minimal and primarily in the muscles of my neck and shoulders. Every couple weeks you can do a little more and a little more. The last thing is lifting. That takes the longest. But it’s only been 4 months and I’ve been doing just about everything for the past month.

Have faith and try not to be scared. I have more energy now and can go up stairs without panting. I’m not exhausted at the end of the day. It’s well worth it, especially if you consider the alternative.

Best of luck!

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Thank you very much for helping in understanding about right heart enlargement.
My hearty wishes for your future well being .