New Here

iVillage Member
Registered: 01-06-2004
New Here
4
Tue, 01-06-2004 - 7:40pm
Hello group I am new and wasjust looking for some help. To make a long story short I was born 31 years ago with CHD and have had 3 major open-heart surgeries and since my last one I have found out that I have Pullmonary Atery Stenosis and need another suregery or maybe even a lung transplant which will involve a heart transplant which I do not need. My activities are extremely limited and I get short of breathe really fast anyways has anyone gone thrue anything like this or have any kind of advice. Well thank you all for listening or shall I say reading. Shelly
iVillage Member
Registered: 10-16-2003
In reply to: shelly1031
Wed, 01-07-2004 - 12:16pm
Hi Shelly,

No I can't relate nor do I have words of advise. I'm on this site because my husband had a heart attack 3 weeks ago. BUT I wanted to say welcome to the site. I'm sure you'll get lots of responses from people that have something constructive to say because it's a great site.

Good luck with everything -

Julie

iVillage Member
Registered: 09-30-2003
In reply to: shelly1031
Thu, 01-08-2004 - 1:29pm

Welcome, Shelly!


I personally have not been through open-heart surgery, but let me ask a few questions....


What type of CHD were you born with?

iVillage Member
Registered: 01-06-2004
In reply to: shelly1031
Fri, 01-09-2004 - 4:14pm
Hi Julie and Jeanie thank you both for responding well Jeanie I was born with TOF and Heart Murmur and I was diagnoses with Pulmonary Stenosis after my last surgery 9 years ago. They did try a Cath but during the procedure something went wrong and they had to stop I almost needed emergency heart surgery again. I am not in no Cardi rehab but that probably is not a bad idea I am going to bring it up with my cardi on my next visit. Well today I am not feeling good I work up extremly dizzy and with a bloody nose (which has never ever happend before) so I am on bed rest for the next few day thru my PCP so I end this for now I am going to call my Cari and tell him what happend today. Well thanks againg for listening and responding. Shelly
iVillage Member
Registered: 07-11-2003
In reply to: shelly1031
Fri, 03-12-2004 - 8:25am
Hi Shelly,

I am new here, too. I was born 36 yrs ago with Patent Ductus Arteriosis, Atrial Septal Defect, and Tricuspid Atresia. I have been lucky enough to not have ever had a surgery or any kind of interevention (except for medicines).

I do, however, have a friend on another message board. Her name is Joanie and she has HRHS (Hypoplastic Right Heart Syndrom). She is currently in talks with her doctors and the unos transplant co-ordinator. Speaking to her may be of much more help to you than I can be. You can sign onto the chdring or the chdfamilies ring at Yahoo.com and leave a message for her there. As well as talk to many parents who have children with TOF.

I hope this has helped, eve a little bit.

Jan