Pulmonary Valve Replacement for my son

[Kathy4Ryan]

I'm new to this site but have been reading it for about an hour trying to find out information. My son is 10 years old and needs to have a pulmonary valve. He was set for surgery on July 7, 2005 but on July 1, 2005 our insurance denied having the surgery on the hospital where his cardiologist doctors. Now, we have been on a roller coaster because we are now going through UC Davis which have a different opinion of what type of valve to use or if it should be deferred for 6 months to a year while waiting for a Contegra Valve which is now in clinical trials at UCSF. We were originally having a cow valve put in with no mention of this new valve. This will be his fourth surgery. He has had two closed hearts and one open heart. He was born with pulmonary atresia and VSD. Is there anyone out there who has the Contregra Valve?? Our understanding is if our son has the cow valve put in it could last from 7 to 15 years but with this new valve it could possibly last a lifetime. Any information would be so helpful for us. Thanks

 

[Ross]

Good Morning Kathy and welcome to the forums.

I'm by no means, anywhere near up to speed on pulmonary valves, but give the others time to wake up and I'm sure someone will respond. If not, we'll help search out the answers for you if we can. Hang in there. The sun is just coming up on the East coast, so it may be a bit yet.

 

[Phyllis]

Kathy,
I don't know anything about Contrega valves either, but did a google search and this from the FDA site might help.
http://www.fda.gov/cdrh/mda/docs/h020003.html

 

[Lynlw]

Hi Kathy, I just joined today also and my son, Justin just got a pulm valve in May, he had a rastelli procedure at 18 months for TGA so he needed to have his conduit replaced since it was blocked so also got a Pulm valve (the first time he ever had one) I belong to a support group on heartcenteronline and a few months ago we were talking about the contega conduit and a couple of the kids that got them in the last year were already having problems with them, If you want to see the info, email me [email protected] and I'll send you the link or copy and past for you whichch ever you would like
Justin also had heart surgery when he was 10 (his conduit cut and patched) so if your son has any question I'll ask Just, Good Luck, Lyn www.caringbridge.org/nj/justinw

 

[Karlynn]

Just wanted to say Welcome Kathy! As I just posted on Lyn's introduction thread, you Moms are Super Women. I would rather be the patient any day, than be the Mom of the patient.

Sounds like Lyn gave you a few good links and some more of our more scholared members will be along I'm sure. (wouldn't be surprised if Tobagotwo is doing a little research right now on this Contegra valve).

So sorry you are having insurance problems - talk about adding stress to an already stressful situation.

Please make yourself at home here.

Best wishes.

 

[Kathy4Ryan]

Good Morning Kathy and welcome to the forums.

I'm by no means, anywhere near up to speed on pulmonary valves, but give the others time to wake up and I'm sure someone will respond. If not, we'll help search out the answers for you if we can. Hang in there. The sun is just coming up on the East coast, so it may be a bit yet.

Thank you for your kind comments. This is unbelievable site.

 

[Kathy4Ryan]

Kathy,
I don't know anything about Contrega valves either, but did a google search and this from the FDA site might help.
http://www.fda.gov/cdrh/mda/docs/h020003.html

Thank you for the site. I had not visited this one. It is so scary.

 

[Kathy4Ryan]

Hi Kathy, I just joined today also and my son, Justin just got a pulm valve in May, he had a rastelli procedure at 18 months for TGA so he needed to have his conduit replaced since it was blocked so also got a Pulm valve (the first time he ever had one) I belong to a support group on heartcenteronline and a few months ago we were talking about the contega conduit and a couple of the kids that got them in the last year were already having problems with them, If you want to see the info, email me [email protected]% and I'll send you the link or copy and past for you whichch ever you would like
Justin also had heart surgery when he was 10 (his conduit cut and patched) so if your son has any question I'll ask Just, Good Luck, Lyn www.caringbridge.org/nj/justinw

Thank you. You feel so alone going through this but now i feel like there is someone i can turn to for help with all the questions we have.

 

[Ross]

Kathy are you having any luck yet? If not, I'll try to move this and get some better exposure to your question.

 

[hensylee]

Mornin, Kathy. Welcome to VR. As you can see the members are as helpful as can be. A great bunch. And if we don't have the answers, someone will search the web and find it.

I am so sorry your son is having to go through all of this. Sounds like he is a toughie.

 

[Mary]

Welcome Kathy.
Sometimes it seems like things are just meant to be. As you all ready know, Lyn just joined VR yesterday, and her son had his pulmonary valve replaced.

When people join together to help one another, the world does become a small place where we are all one together. I'm glad you've joined our corner of it.

Mary

 

[Ross]

Bumping this up as Kathy still needs this addressed.

 

[Ross]

Kathy I can find nothing better on the valve then what PGruskin has already posted. Sorry.

 

[mike shields]

Hi Kathy

I have had my pulmonary valve replaced 3 times, I was born with TOF/absent pulmonary valve. My first surgery was when I was 12 they use a pig valve. The second surgery was when I was 18 and they use a cow valve that time. The next surgery was at 38 and they went back to a pig valve. I've also have mechanical aortic valve at 42. The reason the changed the valve at 18 was that outgrown the first one. I'm not sure if this helps you%2, all the best.



mike