Need help with researching.........

[gijanet]

researching the Carbomedics valve. I have procrastinated long enough, so I guess it is time to face reality............

As many of you know, Katie (just turned four) is due to have the extracardiac fontan and a mechanical valve replacement (for her common AV valve - mitral and tricuspid are merged) sometime very soon. We are just trying to buy a little time to give her body time to fully recuperate from her last OHS - a failed valve repair last April. We go back to the PC in January and I want to be prepared ..........just in case.

I e-mailed Katie's surgeon, and he stated that he would use the Carbomedics valve. I can't find any info on it. I have checked the Valve Selection Forum and can't find anything, either. And I never see Carbomedics under anyone's sig line. Before I e-mail Dr. Bove back, I want to be more informed. I did ask him about the On-X and sent him the site addy that Emma posted, but he wasn't familiar with it and the site wouldn't open for him............dunno why. I probably screwed something up in the transmission somewhere.

I am hoping that some of you guys who love to research things or know the workings of this site better ( I still get lost on here...........sigh! ) can enlighten me or at least point me in the right direction. Should I be questioning his use of this valve? Knowing me, I probably will be anyway, just to see why he prefers it, but I at least want to sound informed when I do "interrogate" him!

Thank you for any info - the good, the bad, or the ugly - or advice you can give me.

And yes, Ross, I realize you will probably move my post to "Valve Selection" forum, but since I can't find anything on there, I posted in the "Heart Forum" because I think there is more exposure here to the masses.

 

[Ross]

A starting point.

http://www.carbomedics.com/

http://www.mcritx.com/history_onx.htm

http://www.mcritx.com/

I find it very odd that he has not heard of On-X. I think there is a case of laziness involved here. On-x is picking up speed in being a new #1 choice.

 

[gijanet]

So the On-X..........

So the On-X..........

is an off shoot from the Carbomedics folks?????????? Did I follow that right?

BTW, what are you doing up this late, Ross? Thanks for the links. They are a great place to start. Would still like to hear from some folks who actually have this Carbomedics thing implanted in their hearts................always wanting more, I know...........sigh!

P.S. Just have to defend my surgeon. He performs over 500 surgeries a year - most dealing with HLHS, or other complex pediatric heart defects, like Katie's, and is familiar with heterotaxy kids (it's so nice not to have to explain situs ambiguous to folks..........heart's on the right and in backwards, stomach's on the right, liver's midline, two bilobed lungs, two spleens, etc.). And with Katie, you're looking at two superior vena cavae, an interrupted inferior vena cava, ventricles reversed, a double outlet right ventricle, and a complete atrioventricular septal defect. While he has performed numerous valve repairs in the course of repairing other complex defects, he does not just do valve replacements routinely in and of itself. They are always part of a much more complex, larger picture when he has to perform them. If we were only looking at a valve repair/replacement, we might have sought out another surgeon who specializes in just that, but taking in the whole picture - remember we are having the extracardiac fontan, too - we are satisfied that our surgeon is the best one for us. And give the guy a break.............he was willing to look at the On-X site and he always answers my e-mails......... Will try sending that link to him again - the one that you posted. Love ya, Ross. Hugs. And, seriously, thank you.

 

[Ross]

From what I'm reading, the original Carbomedics team is responsible for the new On-x valves. Carbomedics is now owned by the Sorrin group, so I imagine that's where the split occurs.

One thing though, it looks like the smallest On-x is 19mm, so they may not have anything for pediatric use. My own surgeon wanted to use one in me, but he needed a partial aortic graft also and they have no valves with graft sleeves attached, so I got a St.Jude instead.

 

[catwoman]

Janet:

CarboMedics is in Austin, right on US 183 (Anderson Lane), I think. I've driven past the building several times while in Austin for cat shows at the Travis County Expo Center. It's a newish building, on north or east side of the highway.

Wonder if the valves are MADE in Texas??? If so and if you chose CarboMedics, Katie could wear a tattoo that says, "Ticker made in Texas for Texans."
When I was little, there was a Ford plant in Dallas. I remember seeing decals on back windows of Fords that said "MADE IN TEXAS FOR TEXANS."
Don't know if they "exported" Fords out of state.

 

[John & Joann]

Carbomedics made the old Starr Edwards. They were all a contractor for the St. Jude valves, but no longer have any relationship with them. Cleveland Clinic uses Carbomedics for many patients. They are highly regarded, are the quietest valves on the market, etc. I do not know if they are made in Austin, but that is the location for marketing, shipping, etc.

Happy Clicking.

 

[tobagotwo]

The valves are currently called Sorin valves, so if you want to look through the forums, that is likely the name to look for. It's a top-brand valve, along with On-X and St. Jude.

Best wishes,

 

[gijanet]

Thanks, guys (and gals)!

Thanks, guys (and gals)!

I knew I could count on you. Looks like I have a lot of reading and researching to do. Couldn't find anything on the Sorrin (sp?) valve. Tried both spellings and struck out coming up with a relevant site. I'm just thinking out loud, but I guess Dr. Bove's rationale for the Carbomedics would be that 1) it has a proven track record, 2) they make pediatric valves, and 3) it's quieter - guess a four year old's chest isn't quite as soundproofed as an adult's. Speaking of, isn't there somewhere you can actually listen to the different valves? Seems like someone mentioned it in a post once..........

Still, it seems like the majority of mechanical valvers on here are ST. Jude's people. It would be nice to talk to a carbomedics person............Hey, Carbomedics Man, where are you?..................sounds kind of like a super hero.................Dundadun...........It's Carbomedics Man - to the rescue.......

Anyway, thanks again y'all, and if you run into a Carbomedics type person, could you steer them my way? Oh, yeah, and Marsha, I do remember that - that soon gave birth to all the "Native Texan" bumper stickers that abounded for years. I wonder if the Carbomedics valves are actually made in TExas - that might make for an interesting, informative road trip if they give tours. Hey, Katie might even do an endorsement. Heehee! And as long as they are actually made in Austin and not part of the NAFTA. Don't think I'm ready to trust Katie's life just yet to a valve "made in Mexico."

THanks again, and if you stumble across something else, please feel free to send it my way. Hugs.

 

[Gemma]

The valves are currently called Sorin valves

They are? In that case Jim's got one!!! His is a 27mm Sorin Bicarbon Fitline. Their website is www.sorin-cid.com
I had no idea that Carbomedics and Sorin were connected, thought they were 2 separate companies.
Jim's surgeon felt it was THE best valve available - his registrar felt he might go for the St Jude, but when we saw the surgeon he said nope, Sorin was the one to go for. Better haemodynamics he said. There are various different Bicarbon models, such as the Slimline (newer version of the Fitline - I'm trying to be philosophical and not get annoyed that Jim didn't get that one - after all, he's got a normal sized heart now so why stress over it? ) and Overline I think, and there is a page on their website which tells you what sizes each comes in.
Just had a look at a site I found the other week, http://members.evansville.net/ict/prostheticvalveimagegallery.htm
which has pictures of numerous different valves - although they show Carbomedics valves (including a pediatric valve) it isn't listed in the company list at the right hand side. But there is a Sulzer Carbomedics. Seem to be making things worse here, not better!!! Sorry!!
Anyway, if it is a Sorin valve just wanted you to know Jim's very happy with his .
Gemma.

 

[Gemma]

OK, just double-checked - it seems that Sorin Biomedica (makers of Sorin Bicarbon valves and other tissue valves and prosthetic grafts etc) and Carbomedics are both part of the Sorin Group (www.sorin.com) so maybe the valves aren't actually the same. But it certainly seems to be a well-respected, innovative group of companies.
Gemma.

 

[medtronic of borg]

Carbomedics man to the rescue

Carbomedics man to the rescue

I have a carbo valve. It is perfectly silent and has one of the lowest thombogenic ratings. I couldn't be happier.

Med

 

[gijanet]

Oh, Carbomedics man, my hero.................

Oh, Carbomedics man, my hero.................

and Gemma, thanks so much guys. I am still a little confused about the whole Carbomedics/Sorin thing, but it is so nice to hear from happy customers...........you just have to wonder and question when everyone else on here seems to be either a pig or a St. Jude's person.

Gemma, thanks for the links...............just a little more reading I need to do..............sigh! And, Brian, you have totally thrown me for a loop with the "thombogenic rating"!!! What the heck is that? Is that something else I need to research and be concerned with???

Thanks again so much. Hugs.

 

[Gemma]

Janet, how about a family tree to get things straight?
Think of Carbomedics and Sorin Biomedica as sister companies, with the Sorin Group as their Big Daddy . St Jude is their cousin, and On-X Carbomedics' child.
Med's comment about the thrombogenic rating is probably to do with the fact his Carbomedics valve, like Jim's Sorin one and newer St Jude's (and On-X, and whatever others there are I can't think of right now) are what's known as "3rd generation" valves - ie they're newer and have the benefit of more research and therefore more hi-tech features. You can have a lower INR range with these valves because they are less likely to form clots, because the blood flows better through them than the older style ones. (Jim's INR range is 2-3 with an aortic valve while it can be 3-4 for the older valves according to American guidelines (higher for mitral and probably for Katie too at a guess) - which Jim's surgeon followed luckily - his cardiologist was all for the 3-4 range regardless of what valve he had but the anti-coag clinic saw sense and agreed with the surgeon . A good thing given his habit of scraping himself on engines and cutting fingers at work ).
Sounds like your (Katie's) surgeon is a good one and is doing what he feels is best for her . I suppose all surgeons have their favoured valves and maybe the St Jude just gets more press because it's been around longer in one form or another. Not necessarily better than any other valve, just better known.
Hugs & best wishes,
Gemma.

 

[Emma]

on-x

on-x

Hi Janet,
I've been wondering how Katie was getting on. Sounds like a good idea to research the valve stuff in advance - at least you're well prepared for it all then.

On the valve issue - carbomedics are who make on-x valves although i'm not sure what name they come under now. The mcrix site is the best one for information and i'm so surprised your surgeon hasn't heard of it but maybe it's not that widespread yet.
The valve is supposedly the best around. You asked what Med was talking about with thrombogenic rating - it's nothing to worry about - he means it has the least record of any clotting developing on or around the valve because of it's design (better blood flow through the valve) and material it's made from (pyrolytic carbon). Supposedly you can be kept at a lower INR range with these valves because of that, altough Chloe's is still kept between 3 and 4.

I do have contacts at the company that developed and produce ON-X - one is particularly helpful and i could email you her address if you want. I'm sure she wouldn't mind if you need more info on the valve.

The smallest valve they make is still quite big - 17mm i think but Chloe has the 25mm as her heart was so enlarged at the time of surgery - so her enlarged heart was a blessing in disguise there i think, cos she may have avoided the need for further surgery depending on how big she gets! Maybe Katie will have a similar thing happen?

Chloe, as you know, also had a common AV valve (tricuspid and mitral combined) and her surgeon separated them first and the tricuspid is fine and dandy, then the mitral was the replaced one - is that what Katie is having done??? I know Dan was asking me about it recently and saying Bethy is having the common one replaced but i don't get why it can't be separated first?? Katie and Bethy have similar conditions don't they?

Not sure i really answered what you asked originally or if i just waffled randomly but yell at me if you want to know anything else and i can try and help. You have my email addy too.
Love and hugs to Katie and you!
Emma
xxx

 

[gijanet]

Thanks, Gemma and Emma!

Thanks, Gemma and Emma!

I really appreciate your efforts in trying to educate me. Although I am not ready to give a presentation just yet, it is starting to make more sense in my non-science-oriented brain. I also want to thank you for trying to allay my fears, Gemma, as your words are truly comforting to read. Katie is quite the little hellion and extremely rambunctious.

Emma, waffle away. I will gladly take you up on your offer for linking me up with an On-X rep, just so I can try and become more informed about what's out there, if nothing more. I could pass on what I find out to Bove, too, just to keep him in the "know."

And yes, Katie and Chloe do share the complete AVSD, but, unfortunately, that is only one of Katie's defects. Besides her CAVSD, her heart is in backwards and on the right (a relatively minor problem), she has a double outlet right ventricle, the L-transposition of the great ventricles ( her ventricles are reversed: morphological right one is on the left and vice versa), bilateral superior vena cavae, and an interrupted inferior vena cava.

Before Katie's second surgery, we sought out numerous surgical opinions and options - that's how we ended up in Michigan. Dr. Bove, using our cath data from our local children's hospital, had hoped to be able to perform a biventricular repair on Katie, with the bilateral bidirectional glenn as the backup plan. ONce Katie was on the table, Dr. Bove chose the backup plan for several reasons: the CAVSD was more unbalanced than our home institution had presented it; the valve did not appear to be "splittable" and so this would have involved a mechanical valve, possibly two; and the interrupted inferior vena cava was a total surprise as the cath doctor from our local children's hospital had reported it as merely occluded instead of interrupted (it actually continues up through the hemiazygous system, which in turn dumps into the pulmonary arteries, although there is one fair-sized feeder that still flows to the right atrium - thus the need still for the fontan). He would have also had to separate the two great vessels out and perform the double switch, thanks to the transposition.

WE knew Plan A and Plan B going in and had deferred the final choice to Dr. Bove's wisdom and expertise. He said post-op that he could have proceeded with Plan A, even with the surprises, but he felt that it was just too risky due to the complexity and length of the surgery, the extended time Katie would have had to be on bypass - and the heart stopped - and the complications from both, and due to Katie's size............He said that the odds of Katie's even making it off of the table would have diminished greatly. Plus we had an acceptable - if not ideal - alterative plan that was much less risky. This was not a "this is our only option situation." I'm just grateful that Dr. Bove did not play cowboy just so he could write one up for the medical journals. I know he truly has Katie's best interest at heart (no pun intended.......yeah, right!) By the way, Dr. Bove does insist that our pre-surgery caths be done in Michigan now instead of here at home as it wasn't very reliable, to say the least. Sooooooooooo that was our one shot at having her CAVSD repaired. Sorry you asked now, I know, as this is probably way more than you bargained for. Us, too.........................sigh!

Oh, geez, I just reread your post and picked up on that about Bethany. Yes, Katie and Bethy are very similar in anatomy, except Bethy is asplenic and Katie is polysplenic. Bethy's AV valve regurgitation has actually gotten better. It was moderate, and now it is/was mild. I remember I was jealous because I was so hoping that's what Katie's would do. I grilled Dan a while back on this, and he said that he wasn't sure what the plan was just yet for Bethy's valve. I know that he posted recently that Bethy is scheduled to have her EC fontan surgery sometime soon - sooner than they thought, but he didn't mention the valve. Guess I need to give him a shout and see if the surgeon is going to address that valve now along with the fontan.

Well, now I have really written a book - guess I should have PMed you, but it's too late now. Anyway, thanks again, Emma, so much for your help and give Chloe a hug from us. Hope y'all are managing to stay well.