P
Peggy in Alaska
Anyone out there with this defect?
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Nancy
Well-known member
Hi Peggy-
Welcome to this terrific site. You've already got lots of friends here.
My husband is the patient. While he doesn't have Ebstein's, his tricuspid has a severe leak and he does have bi-atrial dilation.
I bet there are some with Ebstein's.
Welcome to this terrific site. You've already got lots of friends here.
My husband is the patient. While he doesn't have Ebstein's, his tricuspid has a severe leak and he does have bi-atrial dilation.
I bet there are some with Ebstein's.
P
Peggy in Alaska
Ebsteins
Ebsteins
Thanks Nancy. Hopefully I'm still years from surgery, but my doc says it is inevitable. Scary stuff. Next check-up isnt till summer of 2004.
Ebsteins
Thanks Nancy. Hopefully I'm still years from surgery, but my doc says it is inevitable. Scary stuff. Next check-up isnt till summer of 2004.
Nancy
Well-known member
Hi Peggy-
Just hang out with us here. There are so many very informed folks, and pretty darned nice folks too. If and when you need surgery, we'll help to get you prepared, almost 800 members, that's a lot of experience.
Just hang out with us here. There are so many very informed folks, and pretty darned nice folks too. If and when you need surgery, we'll help to get you prepared, almost 800 members, that's a lot of experience.
C
ccrawford
Hi Peggy - I can't even spell Ebsteins, but welcome to the site and be assured that we will welcome you into the group and try to make you comfortable with your future prospects. I can't speak highly enough of the people here and there ability to support someone who is facing the unknown. Hang around and I bet you wil learn a lot. Chris.
P
Peggy in Alaska
Thanks, Chris.
Evidently Epstein's is pretty rare [lucky me!], so I wonder if I'll find anyone in the same predicament. And most people find it as infants and kids, so there is a lot of pediatric info. on it, but not for adults. I know of one patient at the Mayo in his 70's with Ebsteins that still doesn't need surgery. But I have been told I will need it eventually. I have a career and a 10 yr. old at home. How do you prepare for something like this. Mechanical versus tissue?
Evidently Epstein's is pretty rare [lucky me!], so I wonder if I'll find anyone in the same predicament. And most people find it as infants and kids, so there is a lot of pediatric info. on it, but not for adults. I know of one patient at the Mayo in his 70's with Ebsteins that still doesn't need surgery. But I have been told I will need it eventually. I have a career and a 10 yr. old at home. How do you prepare for something like this. Mechanical versus tissue?
fyrfytr
Well-known member
Hey Peggy,
Welcome and like the others have said you are in with a lot of folks who care. I also don't know that much about Ebstein's Anomaly. Here is a web site with some info. www.cardiology.utmb.edu/slides/ebstein/. I hope this helps you out some. Again Welcome to the site and Enjoy your stay.
Dave
Keep your fires small!
_______________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies
Welcome and like the others have said you are in with a lot of folks who care. I also don't know that much about Ebstein's Anomaly. Here is a web site with some info. www.cardiology.utmb.edu/slides/ebstein/. I hope this helps you out some. Again Welcome to the site and Enjoy your stay.
Dave
Keep your fires small!
_______________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies
P
Peggy in Alaska
Dave:
Thank you for the website. I will certainly bookmark that one and take a look at the information there.
Thank you for the website. I will certainly bookmark that one and take a look at the information there.
G
Georgia
Welcome, Peggy
Welcome, Peggy
Glad to have you here. We have a waiting room for those of you who have the luxury of preparing and learning about your ailments. The waiting room folks took a huge hit last winter and spring as quite a few of the old timers climbed the mountain; so Steve and Betty and the others are glad to have more company.
How do you prepare for this? First, you learn all you can about it. Take some time whenever and read old threads on here. The volume of information is quite astounding. And the arguments and discussions mechanical v. tissue are exhaustive.
Some of the most important info for you will be that dealing with deterioration of physical condition you need to watch for. It can occur pretty suddenly; or sneakily.
Finally, our big advantage is that mostly we're reparable. And the docs we go to are experienced and top of the line. And your going to Mayo is terrific. So basically you have to be really glad you have something they can fix and get on with your life.
Welcome, Peggy
Glad to have you here. We have a waiting room for those of you who have the luxury of preparing and learning about your ailments. The waiting room folks took a huge hit last winter and spring as quite a few of the old timers climbed the mountain; so Steve and Betty and the others are glad to have more company.
How do you prepare for this? First, you learn all you can about it. Take some time whenever and read old threads on here. The volume of information is quite astounding. And the arguments and discussions mechanical v. tissue are exhaustive.
Some of the most important info for you will be that dealing with deterioration of physical condition you need to watch for. It can occur pretty suddenly; or sneakily.
Finally, our big advantage is that mostly we're reparable. And the docs we go to are experienced and top of the line. And your going to Mayo is terrific. So basically you have to be really glad you have something they can fix and get on with your life.
P
Peggy in Alaska
Thank you for the welcome! I hope to be in the "waiting room" for years. You are right, at least I am "fixable". Lost a 42 yr. old sister-in-law to breast cancer last summer. She fought a valiant battle, but there was nothing left to try and nothing left to do.
I'll have to spend some time going through old threads. I have no idea how to do that. But I'll start trying to figure it out, one of these days.
Thanks again.
I'll have to spend some time going through old threads. I have no idea how to do that. But I'll start trying to figure it out, one of these days.
Thanks again.
Nancy
Well-known member
Peggy-
To view each forum in its entirety, click on the name of the forum, i.e. Heart Talk, then go to the bottom of the page, there is a blue section where you can choose several options. Where it says "last 30 days", click on the arrow, and choose "the beginning", press "go" and all of the threads should appear.
As of today, there are 4,037 threads with 41,454 posts in the forums section, so there is a lot of reading to do.
To view each forum in its entirety, click on the name of the forum, i.e. Heart Talk, then go to the bottom of the page, there is a blue section where you can choose several options. Where it says "last 30 days", click on the arrow, and choose "the beginning", press "go" and all of the threads should appear.
As of today, there are 4,037 threads with 41,454 posts in the forums section, so there is a lot of reading to do.
Welcome Peggy!
Welcome Peggy!
Hi and welcome to our waiting room. Come in and read and make yourself very comfortable. Ask whatever you want and notice we are open 24/7 to pop in and spend a few minutes. We certainly did loose members recently ( I think there was a special summer rate or something being promoted) and about 5 all had surgery in one week. Everybody has checked back in and are on the mend.
How long have you been searching the web on Ebstein's anomaly? Some things are hard to find quality information about, but once you do, it can open the door for finding other sites. Good luck with your search.
Again welcome,
BEtty(bvdr)
Welcome Peggy!
Hi and welcome to our waiting room. Come in and read and make yourself very comfortable. Ask whatever you want and notice we are open 24/7 to pop in and spend a few minutes. We certainly did loose members recently ( I think there was a special summer rate or something being promoted) and about 5 all had surgery in one week. Everybody has checked back in and are on the mend.
How long have you been searching the web on Ebstein's anomaly? Some things are hard to find quality information about, but once you do, it can open the door for finding other sites. Good luck with your search.
Again welcome,
BEtty(bvdr)
Hi Peggy,
One more thing, We do have a member named Joyce who lists Ebstein's. You might look under "Yokena" in members and try to contact her.
Betty(bvdr)
One more thing, We do have a member named Joyce who lists Ebstein's. You might look under "Yokena" in members and try to contact her.
Betty(bvdr)
Y
Yokena
Me, too!
Me, too!
Hi Peggy!
Yep, there's at least one of us here already with Ebstein's. I had surgery two years ago July 12th at the Mayo Clinic in Rochester, MN. My valve was severely deformed (only one leaflet) and so far down that I had essentially no ventricle, so mine was replace. They usually use a porcine or bovine valve in the tricuspid location since the pressures are lower on the right side of the heart and they last up to 20 years there. That's really good because it usually means no coumadin is necessary.
Before my surgery I couldn't walk 50 feet without resting and now I work out and walk 4 days a week. I'm definately a happy camper! I work full time and have a "real" life, even if I do need a bit more rest than most.
There is an EA support group on MSN at http://groups.msn.com/EbsteinsAnomalySupportGroup and good information also available at the Adult Congenital Heart Association site http://www.achaheart.org//index.php. I have other congenital defects besides Ebstein's and there's good information about all kinds there.
Email me if you'd like at [email protected]. Good luck!
Joyce
Me, too!
Hi Peggy!
Yep, there's at least one of us here already with Ebstein's. I had surgery two years ago July 12th at the Mayo Clinic in Rochester, MN. My valve was severely deformed (only one leaflet) and so far down that I had essentially no ventricle, so mine was replace. They usually use a porcine or bovine valve in the tricuspid location since the pressures are lower on the right side of the heart and they last up to 20 years there. That's really good because it usually means no coumadin is necessary.
Before my surgery I couldn't walk 50 feet without resting and now I work out and walk 4 days a week. I'm definately a happy camper! I work full time and have a "real" life, even if I do need a bit more rest than most.
There is an EA support group on MSN at http://groups.msn.com/EbsteinsAnomalySupportGroup and good information also available at the Adult Congenital Heart Association site http://www.achaheart.org//index.php. I have other congenital defects besides Ebstein's and there's good information about all kinds there.
Email me if you'd like at [email protected]. Good luck!
Joyce
