posted July 08, 2011 02:39 PM            

I began experiencing heart palpitations more and more frequently, to the point of nearly passing out, and have been feeling neausous and lethargic as time goes on.

I always thought I was just physically wimpy, I've never been able to maintain in sports, although I've never been out of shape, I would get so winded with cardiovascular exercise. You know how it is when you're young though "come on, suck it up and run!"

Anyway, I finally wen to urgent care because the episodes were getting worse and more frequent and I didn't want to have one while driving or carrying my daughter. I had an EKG which came back abnormal. They then put a Holter Monitor on me for 24 hourse. This led to being scheduled for an echocardiogram, then a transesopogeal echocardiogram (when they knock you out and put a scope down your throat to see your heart from the inside).

Finally, after 30 years, they found the massive hole in my heart. The right side is enlarged greatly from working so hard all these years, and they were quite surprised I had a normal pregnancy (well, semi normal) and am able to oxygenate enough.

So, now I will be meeting with a cardiac surgeon and getting open heart surgery in the next few months.

This is not very common, but is now found in utero and generally reparied right away or monitored to see if it will naturally close, or operated on in the youth before too much damage has been done.

I'm surprised they never found this or the cause for concern when I had the EKG at 8, but I guess I'm relieved they found it now. I would probably not make it past my 50's with the damage that would be done by then.

Anyway, just wanted to put that out there and see if anyone else has gone through this and what your experiences are. I'm not a fan of hospitals, and the thought of being under and in hospital for a week and then laid up for over a month is not thrilling to me.

posted July 10, 2011 03:50 PM            

She is now 19 and will, most likely need more surgeries to come, she is missing her pulmonic vavle.

She too has a big right ventricle, which could put her into heart failure someday, if the valve is not placed at sometime in the future.

It is amazing that you made it so long and had a pregnancy without anybody finding out till now!

Without knowing more specifics, cant really say much more. I am a ICU Cardiac RN and could comment on what the docs are telling you with more info.

I will tell you, tho, live your life as normal, taking into consideration your uniqueness and physical abilities.

An interesting side note, my daughter was obsessed with The Civil War when she was younger and thought she had lived as a soldier and was shot...in the heart.

There are so many metaphysical implications with heart problems (have a bit of heart failure myself) as well as physical.

If you would like to communicate off forum, I can give you my email.

best of luck and blessings!

posted July 15, 2011 10:25 AM            

Sorry it took me so long to get back to this. So much going on surrounding this and the effect just having to be out of commission will have on my life. Single mom, just bought a house in February, no insurance. Yeah. Kinda a rough situation.

The thing that scares me is anesthesia. I think the rest is fixable and routine and my case isn't any different than anyone else's. That I know of. I will find out once I meet with the specialist I guess.

Thanks for the kindness, as always, this is a place I feel safe sharing this.

Terri, feel free to e-mail me. I think you can find my e-mail here since I mod.

Much love to all!

Ghani

posted July 15, 2011 04:57 PM            

Do research on your anesthelolgist as well as your surgeon.

posted August 05, 2011 09:12 AM            

We decided to go in through the sternum rather than thoracically, as the idea of having my muscles cut into and another incision for the heart and lung machine to be inserted femorally wasn't all that appealing to me. I'm not vain, give me my chest scar!

I'll be gone from online for a few weeks after, then probably here a lot until I'm able to return to work.

posted August 06, 2011 06:01 PM            

Keep us updated please!

posted September 07, 2011 11:45 AM            

He's a very lovely man and I feel confident I am in capable and caring hands.

posted December 13, 2011 04:34 PM            

I think she's still a Mod here, so it worries me that she hasnt touched base. But I know she's a busy mom too and probably recouperating...

When I first read what you were about to go through and your attitude towards it, Ghani, I thought you were so brave and admired your spirit about it.

Really hoping you are happy and healthy right now & to hear from you or someone who knows how you are doing at some point soon.

Lots of love