Hello everyone

[mamarobn]

Hello everyone. I am new here and recently stumbled across this community. Please forgive me if I mess up on the lingo. I have not had any major symptoms with my heart. But my dr noticed something out of the ordinary on a regular checkup. The next thing I knew I was seeing a cardiologist, ECHO, TEE, cardiac cath, holter monitor and MRI. The surgeon wants to replace my tricuspid valve and possibly my mitral valve. I am told that I have Ebstein's Anomoly. I am worried about the surgery and wondering if anyone has had experience with OHS and invasive surgery. I may have a choice in the matter on the type of surgery...not sure which way to go. Any information would be helpful. I am also curious to know if anyone else found out about heart problems without major symptoms.
Thanks.

 

[Greg a]

Mamarobn, a heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters, there are some minimally invasive so ask away, there is a wealth of knowledge here for the future .....


To aid with "the lingo",Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[ALCapshaw2]

MANY of our members thought they were asymptomatic before their surgery but discovered a 'renewed energy' after they 'got fixed.

Younger athletic types also show few symptoms in spite of their test results which often indicate valves in need of repair or replacement. Conditioning allows the body to 'do more with less' and can mask symptoms.

FWIW, my view of Symptoms is that Damage is being or has been done to the heart.
Surgeons like to Fix the Heart BEFORE there is permanent damage to the heart muscles and walls.

It sounds like you have had all the right tests to diagnose heart valve problems.
If all the numbers match up, it would be wise to believe them and 'get yourself fixed'.

'AL Capshaw'

 

[Natina13]

Welcome to the waiting room, Mamarobn and Julian....ditto to what Al said ....keeping you both in my prayers. . Kent your in my thoughts/prayers..thinking positive for you, and your family... will see you on the other side of the mountain.
Renee

 

[Lynlw]

Hi, I see you have Ebstein's Anomoly and need your Tricuspid valve replaced. I'm guessing you found out Ebstein's Anomoly is a pretty rare group of congenital heart defects (CHDs) and also Tricuspid Valve replacements are relatively rare compared to the more common valves that need replaced like the Aortic or even Mitral. I'm not sure of your age or where you live, but I was wonderring if you are going to Cardiologist and Surgeons that specialize in Adults with CHD, or CHD, who would have the most experience with Complex hearts like yours. Most of the top centers for Congenital Heart Defects are Childrens hospitals or centers in usually University hospitals that do heart surgeries on children.. The top Congenital heart centers are NOT the same as the top Heart centers that mainly take care of adults and aquired heart problems.
If you haven't, I would really suggest getting opinions from CHD /adults with CHD specialists, before you have surgery. There is a great org (w/ forums) for Adults with CHD at http://www.achaheart.org/ that has listings of Adults with CHD centers, they aren't ranked but have quite a bit of info.

There are a couple members here with Epsteins, kfay is one of them, (I'll make sure she sees this thread) and there are probably others at the adult with chd group.

Mayo has a pretty good section about Eptseins and the more common problems associated with it and treatment http://www.mayoclinic.com/health/ebsteins-anomaly/DS00805