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Surgery to remove extra membrane on heart - kinda scared

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Posted 8/29/2005 10:27 PM (GMT 0)

I found this site by chance when looking at info for heart caths.  I am going in for one on Wed and am not really nervous about the procedure but more about what they find.  I already had a TEE done and the dr said I had a rare condition where I was born with an extra membrane around my valve which has to be removed.  He said it is causing the blood pressure within my heart to be extremely high and once the surgery is done it will go back to normal.  He couldn’t tell me if I could have it done with minimal invasive surgery or the full blown crack the chest open surgery but he made it clear I had no choice.  I just can’t even imagine having my whole chest cracked open but others do it so I guess I can make it through as well.  It sounds like the most painful thing I will ever endure but then again I tell myself if I don’t endure it I won’t have to endure much more in life because it’ll be over.  I haven’t told my family yet and have only told a few friends.  My parents are older & rely on me for everything and this will be very hard on them so I am waiting to tell them until just shortly before I have surgery.  Well I know I am rambling but I guess I am just looking to see if anyone has any great words of wisdom for me or any surgery experiences they would like to share. If anyone has had this extra membrane issue it would be great to hear from you but I’m not expecting that as it is fairly rare (oh lucky me!).  Thanks for letting me ramble!!  Jeanne

Posted 8/29/2005 11:35 PM (GMT 0)
Hi and Welcome to HealingWell, Jeanne!! tongue

 

I am so sorry to hear about your upcoming surgery!  I don't know the choices that they have for this particular surgery - I would strongly suggest that you speak to your Dr. re these questions.   Calling his/or her nurse and asking her these things might give you the info that you are naturally seeking and offer you some peace of mind!

 

I've had several caths performed and they've gone pretty smoothly! - they've managed over the years to get this more perfected and while they are actually doing the cath, you will have been given something to relax you and though you are awake, you'll be sort of sleepy. tongue The following link should give you more of an idea of what to expect.

http://www.nlm.nih.gov/medlineplus/ency/article/003871.htm

 

My best wishes to you and please come on back and let us know how you are doing!!  - Don't wait too long to tell your folks, they will, of course, be concerned, especially as you are the main caregiver - but the advance notice may help them find someone else that can help them while you're healing and that would also ease your mind!

 

Hugs, Teri tongue

Posted 9/1/2005 12:59 AM (GMT 0)
Thinking of you today, Jeanne!!

 

I hope that your cath went okay and that you are doing alright?!  Please check in and let us know how you're doing, okay!

 

Hugs and Best Wishes, Teri tongue

Posted 9/1/2005 8:18 PM (GMT 0)
Welcome and wishing the best for you Jeannie.  I hope your cath went well and that your questions have been answered by now.  Let us know please.  God bless, Pat
Posted 9/1/2005 8:22 PM (GMT 0)
Jeanne,  Please check in - kinda worried!.............Dave

Posted 9/2/2005 5:15 PM (GMT 0)

Thank you all for your nice comments!!  I'd love to say the test went great but after laying flat for 6 hrs when they got me up to walk around the artery started bleeding all over the place.  Needless to say there was alot of activity suddenly around me to get it to stop.  By the time they got a balloon on it I was bruised and sore beyond belief.  So then they ended up keeping me overnight at the hospital.  I am very sore but I'll survive.

The results of the test were pretty much as I expected, they will have to do surgery to remove the membrane.  The dr. said it was the worse case of subaortic membrane he had ever seen so he referred me to a top surgeon because he said they really won't know until they get in there how exactly they will remove it.  But he said once it is removed I should be fine and the good news from the cath is that my arteries are in great shape and he also didn't think the valves would need to be replaced either.

Next step is seeing the surgeon on Tues so I'll let you all know how that goes.  Thanks again for all your warm thoughts.  They are really appreciated!!

Jeanne

Posted 9/2/2005 6:32 PM (GMT 0)
Hi Jeanne, tongue

 

That episode must have been pretty scarey for you!?

 

I sure am sorry to hear about you having to have the surgery - but if this will help you it will be wonderful for you! 

 

I'm glad that you found out that your arteries are doing good - that's one less worry.  Please keep us posted and you are right - this is a pretty rare one!

 

Hugs, Teri tongue

 

Posted 9/2/2005 7:10 PM (GMT 0)
That would be so scary to have the cath site start bleeding!  Glad your ok now and also its great news that your arteries look good.  Wow, and the top surgeon to do you surgery!  That has to be comforting!  Let us know how the appointment goes Tuesday.  Hugs, Pat
Posted 3/31/2015 12:24 AM (GMT 0)
Hi Jennne,
I found you message,
Is anyway i can contact you?
I have a same problem(subaortic membraine)
I been told, its need to be remove ASAP.
I am very scary. Please email me Please.
Thank you.
[email protected]
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