Adult Congenital

[Paul_R]

Hi,

I have been lurking on this board for well over a month now and finally decided to take the plunge to join in. First off let me just say that I have already learned a great deal from reading through many of the posts and I am thankful to you all.

I must admit that I have become somewhat obsessive about learning as much as I can about my heart problems since it has suddenly reappeared in my life.

To make a long story as short as possible, I had a coarctation of the aorta repaired when I was 7 years old and thought that was the end of my heart problems. Now that I am 40 I have recently found out that I have an unrepaired Atrial Septal Defect and Mitral Valve Prolapse with moderate regurgitation. Throw in a bicuspid Aortic Valve and a mildly enlarged right ventricle and that pretty much sums up my heart history.

I am at peace with the fact that I need surgery to repair the atrial septal defect, although the prospect of undergoing a 2nd open heart surgery still scares the you now what out of me.

Through doing some research I have learned that there is a clinic for Adults with Congenital Heart Defects at UCLA. I have managed to have myself referred to Dr. John Child at the clinic. I also, understand that the surgeon they use is Dr. Hillel Laks. Has anyone from this board had any experience with these doctors? I would like to find out as much as I can before my June 11 appointment with Dr. Child.

Thanks in advance for all your help,

Paul

 

[Dee]

Welcome to the VR family Paul! I don't have the information that you're looking for, but know that there is probably someone out there that does. I just wanted to welcome you and let you know the others will be along soon. If you've been lurking for a month, then you know what a great place this is and how caring and supportive everyone is. It's also a great place for gaining knowledge and I think that's very important when faced with OHS. Good luck to you and we're here for you as you journey down the path of OHS.

~DeeDee~

 

[tobagotwo]

Look in the "New Problems, Big Decisions" thread for a post by Labguides. There's a UCLA mention of Dr. Laks there.

 

[Harpoon]

Hey, I got transposition here. =)

Was first fixed at less than two years old, lead a perfectly normal life until my tricuspid valve decided it had had enough and started to fall apart on me. Got an artificial valve in March 2003 and I'm good as new!!!!


I saw Dr. Mee at Cleveland Clinic, probably the best of the best.


Dr. Laks' name has come up from time to time and I haven't heard anything negative said. I don't know a whole lot about him and UCLA but I understand they know what they're doing as opposed to some other places in the world (Rainbow Babies in Cleveland, not to name names...)


You might consider checking out US News and World Report for current ratings of hospitals and surgeons. I don't recall how specific they get, but I'm sure UCLA would be listed.

Good luck!

 

[Paul_R]

I new I would get some quick responses but not this quick.

Yes, I have research the U.S. News website and UCLA is ranked 14 and is the best place in the immediate Los Angeles area for OHS. I also have research the bio on Dr. Child and Dr. Laks on UCLA's website. I do know that the Adult Congenital Clinic at UCLA was the first and is the largest of its kind in the U.S.

Its funny how small this world can be sometimes because in researching Dr. Laks background it turns out that he was a resident at Boston's Childrens Hospital at the time I had my coarc repaired there in 1971. To me I look at that as being a good omen.

Anyway, you can read all the bio's you want on doctors but still not get a feel for how they are in dealing with patients. I am hoping that someone on this board may have had personal experience with them.

Thanks again for your helpful responses.

Paul

P.S. I have read the book "Walk On Water...", read it 3 times. It opened my eyes on not just letting any heart surgeon work on me.

 

[gijanet]

E-mail me privately.

E-mail me privately.

Paul,

I belong to several congenital heart defect groups. I know of at least two parents whose children have undergone surgeries by Dr. Laks. They rave about him, but if you will e-mail me privately, I will put you in touch with them. May take a couple of days as I will have to e-mail them and make sure that they are okay with my giving out their e-mail addys. I am sure that it will be as most parents of CHD kids feel an obligation to share info, but feel like I need to ask first and give them a heads up.