Help! 9 yr old getting PVR on Monday......

[gijanet]

I need some help researching. A friend of mine's little girl is having her pulmonary homograft valve replaced this MOnday (3-27). Marlie had the Ross when she was an infant. Her homograft valve is in pretty bad shape. They thought she was going to be able to wait until this summer, but at her last PC visit her PC said it needs to be done ASAP and that the valve function had deteriorated significantly since her previous visit 6 months ago! The surgeon concurred and said that he will make a decision as to what type of valve once he is inside Marlie's chest, but these are the type and order of his preference:

1) the Contegra bovine "vein" (her mom's words) ????

2) the Edwards bovine

3) another homograft

The only info I have been able to find on the Contegra was this thread:
http://www.valvereplacement.com/forums/showthread.php?t=11969&highlight=contegra . Phyllis listed the site, but the post by Lyn about the Contegra having problems is a concern. Is there any later info on this? Has anyone heard anything or have any experience with this?

The only info I am coming up with for the Edwards is aortic bovine valves. Does this matter? Is this info still good? (Please forgive if this is a stupid question. It sounds pretty stupid just typing it............sigh!)

Thanks for any info or experience you can share. It's been an incredibly long week at school..........cussed out Tuesday by a student, who then proceeded to cuss out the VP...................fight yesterday in my hall between boys from the home turf and the Katrina kids.............came home today to a naked Katie bobbing for grape tomatoes again...............sigh! ........ and now Marlie's impending surgery MOnday..........ANd I just realized I am probably posting this in the wrong forum....................my brain is just not functioning like it should! Hasn't in about five years and four months............

Many hugs. Janet

 

[Phyllis]

Janet,
I found the following sites on the Contegra- hope they help!

http://www.fda.gov/cdrh/mda/docs/h020003.html

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=11932171&dopt=Abstract

http://www.medtronic.com/intl/contegra/

 

[Phyllis]

Janet,
Is this the Edwards valve he is talking about??- It seems to be experimental, but the only thing I could find on an Edwards valve being used in the pulmonary position.

http://indianheartjournal.com/March...-Edwards/balloon_valvuloplasty_of_stenose.htm

Still having trouble downloading posts in the forum- I think it has something to do with my dsl down here as I had no trouble when I quickly accessed the forum in CT. Frustrating to use, but I wanted to try and help and I hope these sites have given you a place to start your research.

 

[Praline]

(((( Marlie))))))

(((( Marlie))))))

I do not know a lot about different types of valves but i will sure keep Marlie in my prayers.

 

[Guest]

Like Praline, I have no answers, just thoughts/prayers coming to Marlie.

And, Janet ... thoughts/prayers coming your way, too.....



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

 

[Nan]

No answers either, but just wanted to express my support to everyone! And Janet, special thoughts for you for all you are going through. You are a trooper.

 

[George]

I think it is interchangeable

I think it is interchangeable

I have an Edwards bovine aortic tissue valve. It CAN be used in the pulmonary position. I had my PVR last fall. I can assure you that it would be fine. Best wishes to Marlie on monday!

 

[gijanet]

George, thank you..............

George, thank you..............

Now I don't feel quite so stupid. That explains why Phyllis and I were striking out coming up with anything much on the Edwards bovine pulmonary valves. I guess they are interchangeable?? Thanks again for your input and will relay your good wishes to Marlie's mom. Hugs. Janet

 

[gijanet]

Thank all of you so much.

Thank all of you so much.

This is really helping. I am going to send what I get to Marlie's mom late tomorrow afternoon as I don't want to wait until Sunday. If she is anything like me, her brain will be fried by then.

Phyllis, you are supposed to be resting up, but thank you so much. You are my rock and pretty darn good at research.........I still haven't forgotten who first found and forwarded the argatroban info last July. ((hugs)) And, oh yes, I think they are very helpful. I read through all of them. The Edwards one is a little iffy, but at least we know it can be ballooned and hold up. Thanks again so much. J.

Nan, Cort, Praline, thank y'all so much for the prayers and good wishes. I will be sure to relay them and thanks for mine, too. Additional prayers are always welcome. And, Cort, you can have my job if you want it.............sigh!

Hugs to all and thanks again so much. Janet

 

[gijanet]

Just bumping this back up......

Just bumping this back up......

as time is of the essence here. Still looking for more info and/or experiences. Thanks so much. Janet

 

[Lynlw]

Janet
Justin has the CE aorta valve as his pulm they use the aorta ones.
I've heard alot of problems w/ the contegra, i would never let that near Justin last year or so on heartcenter a few parents who's kids had the contegra noticed most (like 3 out of 4) had problems in a year or so. I'll search for the links if you want. Lyn

 

[Lynlw]

Oh Michelle's (KWH) John got the CE one also last summer. Lyn

 

[gijanet]

Thanks, Lyn............

Thanks, Lyn............

I was hoping you'd pop in. Was gonna search for your e-mail addy, but was too tired last night. And just got home from taking Katie to a birthday Princess Tea Party..............Will give you a shout. Hugs. J.

 

[Guest]

*raises eyebrow*

I can have your job, Janet????? SIGN ME UP!!!!

 

[gijanet]

*raises eyebrow*

I can have your job, Janet????? SIGN ME UP!!!!

DONE!!! It's now officially yours. Can you be hear Monday by 8 AM? Hugs. J.

 

[Guest]

Sadly, no.

But, let's see what we can work out, alrighty?

 

[Destinova]

My surgeons both agreed that the PV doesn't need to have a "great" valve, just something that functions. They said that a lot of people can have a poor PV and never know it, and since the location of the PV is on the "outside" of the heart, it is a much, much simpler suregery than AVR or MVR. They are currently perfecting catheter replacements for the PVR AFAIK.

So, bovine, porcine or human, I don't think it really matters, except if human tissue is to be used, pulmonary tissue seems to last longer.

 

[JeanneImp]

Janet,
How did Marlie make out yesterday????

 

[gijanet]

Sorry, Jeanne..........

Sorry, Jeanne..........

I updated under post-surgery. But she did great! Thanks for the prayers. They definitely worked. Hugs. J.