New User-Daughter with Ebstein's

[tclary1687]

After reading the post here, I knpw I'm in the right spot. You all have the knowledge I'm looking for.

My daughter(who is now 19) was born with a VSD. The cardiologist monitored her closely and shortly after she turned 1, the hole closed on its own, however they then diagnosed her with plumonary valve stenosis. They continued to watch her closely, and when she was 4, she has angioplasty to open the valve. This resulted in some mild reguritation. They continued to mointor her and told us that when she was a teen, she would probably need valve replacement.

Shortly after she graduated from high school, she had her last visit to her pediatric cardiologist, who told her she was doing well and to follow-up with an adult cardilogist in a year. Imagine our surprise, when a new general practioner was referring us to a cardiologist for a TEE and then a heart cath and telling us she had Ebstein's Anamoly. We still can't believe that in all these years, no one got it right. She had EKGs and ultra sounds yearly to monitor her progess, yet a general practioner listen to her chest with the stethoscope and knew she had something serious. I am thankful we found her. Everyone else told my daughter she was just tired from being a teenager.

Now she is scheduled to have surgery in June to either repair or replace her tricuspid valve, close an ASD, and to repair her pulmonary valve.
Her surgeon is Dr. Richard Stuart, who was trained at The Cleveland Clinic. She has a wonderful raport with him, but the closer to June we get, the more anxious we all are. Can someone tell us what to expect? How long is the surgery? What can she and I expect after surgery? Also, if they need to replace the valve, should she have tissue or mechanical? She doesn't want to repeat the surgery in a few years, she would like to get this taken care of and move on with her life.

I am looking for all and any help you may give. If there is anyone who has Ebsteins and been through surgery, it would be great to hear from you.

Thanks
Tammy

 

[geebee]

Welcome Tammy - you have come to the right place for support and answers.
Tammy will be in surgery for a number of hours. The exact amount varies from person to person. Recovery from OHS takes many weeks, each one is better than the last, with some ups and downs throughout. She will need someone around all the time for the first couple of weeks and then taper off from there.
Pain is quite controlled these days with meds so that is not a big issue although there is pain. Sneezing and coughing can cause excrutiating pain so be prepared with a pillow to hold against the chest for those.
You have time so please take awhile to read through the forums. There is so much information available that will calm you and give you hope and encouragement.
If your daughter wants the best chance to go as long as possible without another surgery, mechanical is the best route. Since she is so young it is possible even a mechanical will need replacing down the road. Again, many threads here on valve choices and some of them get a bit heated so please don't let that cause you discomfort. We are all passionate about our choices and helping others and sometimes we might be quite outspoken.
For information on life with coumadin please check out Al Lodwick's website. He is our resident pharmacist who runs a coumadin clinic. We could not get along without his help and advice.
http://www.warfarinfo.com/
Take care and let us know how we can help.

 

[tclary1687]

Thanks Gina. I will continue to read through the posts here. It is comforting to know that others have gone through this and that they are doing well. I will post updates when she has surgery and I am sure I will be posting more question.
Tammy

 

[Lynlw]

Hi tammy, welcome, this is a great place for info and support. My son Justin, just turned 18 and just had his 4th OHS last may (he had a broken pacemaker removed the year before that in addition to the 4) he got a pulmonary artery and had his conduit replaced, he had surgery on a Monday and was home on friday. Justin is good about talking w/ others kids having surgery, if you want email me and i'll give you his AIM or email addy. here is a link to his page, www.caringbridge.org/nj/justinw
I really recomend setting one up, it makes it so much easier to give updates when you are in the hospital, plus it does so much good emotionally to read the notes from everyone and know they are praying. both www.caringbridge.org and www.carepages.com are free websites for families dealing w/ medical issues. I can't really give you a time frame, since Justin's surgeries were different and he had alot of internally scar tissue from all his other surgeries
I was wonderring if the new card is an ACHD specialist since they know the best about treat someone w/ epsteins and CHDs.
A mechanical valve would last longer than a tissue vlave, BUt it is alot harder to go thru a pregnancy w/ a mechanical valve, so if possible many of the girls get a tissue valve to try to get them thru their childbearing years. It IS possible to go thru a pregnancy, w/ a mechanical, but it's not really recomended. you can do a search here for pregnancy. If I can help w/ anything just ask,
Lyn

 

[Karlynn]

Welcome! A good diagnostician is worth their weight in gold. Hang on to the GP!

I'm glad you found us. We are a large, but tight knit family ready to help and support anyone who would like it. In turn I'm sure that you will have insight to pass along to others.

 

[gijanet]

Welcome to the group!

Welcome to the group!

Tammy, I am so sorry you have to be here, but this group is so supportive. I can't help with the Ebstein's, but I could put a post out to PDheart asking for some other parents of Ebstein's kids if you would like someone else to talk to about that condition. Most of the kids would be younger, but the syndrome is the same, of course, regardless of age.

For valve questions, though, this is the place to be. Many hugs. J.

 

[Lynlw]

there also is a great forum for adults w/ CHd, i just did a quick search there for ebsteins and found a few members. here's the link http://www.achaheart.org//boards/index.php

there is a forum for the CHd person and a family ones but almost everyone post on the general forum, Lyn

 

[tclary1687]

Thanks for all of the well wishes and advice. We will be setting up a care page for Alician and will continue to post information here on her progress. It is comforting to know that others have gone through this and done well. Alician has her next appointment with the surgeon tomorrow to answer any last minute questions about the upcoming surgery. Once again, thanks for all of the support.

Tammy