On-X (pyrolytic carbon) mitral valves

[Emma]

Hi,
I was a member of this site a couple of years ago and have happily, just rediscovered it again.
Our 4 year old daughter Chloe was born with CAVSD and after 4 surgeries had a mitral valve replacement in June 2001, so has been on warfarin (coumadin?)ever since. I test her INR at home with Coaguchek.
My question is, does anyone else have an ON-X valve as opposed to St Judes or any other???
I know of no-one else with the ON-X valve - adult or child - and yet supposedly they are the best ones at the moment - or so her surgeon told us (and we have read on the On-X makers website), so we'd love to hear from ayone else with experience of these valves.
Chloe was the first child successfully to have one in the UK but are there any people around the world with them too??
Thankyou in advance
Emma
(Portsmouth, UK)
xxx

 

[Ross]

I lucked out with my Aortic valve replacement. My surgeon wanted to use an ON-X but they didn't have a model with a graft sleeve for the aorta attached, so he used a St. Jude instead. He was really talking up the ON-X to me too before surgery.

We had a representative sign up as a member. He made only a couple of posts and disappeared. I'll have to look into that.

Looking back on things, I replied to you then also. Your old profile is still there, but I have no way to combine profiles. I could put all your old posts with the new ones under this profile.

Are there any problems with the valve?

 

[Gemma]

Hi Emma,
I'm in England too (Chester). I think someone posted a thread about the ON-X valve a couple of months ago, but I can't remember if anyone actually had one! My boyfriend Jim has a Sorin aortic valve, and I know of 2 others on this forum - perimeno's brother (in Leeds) and Chris, who is a new member, in Bristol - I noticed he also has one. I'd kind of assumed that was the way British surgeons were leaning at the moment. Seems that most people in America have St Judes.
Oh, by the way - do you have to take Chloe for INR tests at the clinic/hospital at all? Or is it purely home-testing? Just curious as Jim got himself a Coaguchek in April and has had practically identical results to those of the clinic ever since (the biggest difference has been 0.3, last time it was exactly the same) but is having a problem getting them to let him home-test and NOT have to go for the blood tests as well. Seems like a waste of £399 and time if all he's doing is knowing what the results will be the day before they post it back to him. Currently we're keeping a record of each Coaguchek/clinic result and hoping to send it to them to put forward the case for home testing (this time with facts and figures - hoping it may be more effective than just asking if he can phone with his results. If they have it in black and white that he's capable of getting accurate results maybe they can't refuse ).
Sorry to ramble off topic but I would be interested to know how you organise the home testing.
Gemma.

 

[Emma]

on-x

on-x

Hi Gemma and Ross,
Thanks for your quick replies.
Ross, yeah i did post on here ages ago but lost our internet connection and don't remember now what any of my replies said to be honest - memory like a sieve would be an understatement for me!
Chloe's surgeon at Southamptopn General had been doing research in America before her replacement and was very pro the ON-X valves - he went into detailed description for us on how much more advanced they are and completely sold us on it when we agreed for him to replace her mitral with one.
She has had no (and i say this touching all wood and very warily as she has her 9 monthly checkup in 2 weeks!!) problems with her valve and is doing extremely well. Before the replacement she was lethargic and grumpy - 2 days after coming out of PICU i thought i had a different child - she is soooo energetic and happy and LOUD! I have no regrets about the replacement - even with the pain of warfarin!

Gemma, I test Chloe's INR purely with coaguchek at home and love it! When we first started with it, i did hospital ones to check the result but only did that about 6 times and since then i have gone it alone and been fine (again, touching wood!)
Chloe had a few problems with venus blood tests and ended up looking like a battered child once when one SHO messed up a blood test and left her with a HUGE bruised blood clot in her hand that took weeks to go! Then ACE (anti-coagulation Europe) heard her story and offered to donate a machine to us - life savers!!! Now Chloe gets everything ready for her 'red tests' and doesn't even murmur when i check it.

Sorry, I've waffled and i'll be quiet now.
Still interested to hear anyone elses experiences

Love Emma
xxx

 

[Gemma]

Thanks Emma
I think I'll give ACE another ring - Jim spoke to them a few months ago and they were going to send him and the hospital some info but we've not had anything. Nice to hear that Chloe's so at ease with the whole thing, and no doubt being able to test purely at home is a lot easier for both of you. No idea why Jim's hospital is being so awkward, but it's early days yet!!
Gemma.

 

[Ross]

Valveman1 was the representitive I was trying to think of. He only made one post and disappeared. If you have questions, you might send him an email through the board.

 

[Darron_ATL]

More of a viewer than a poster, so been pretty quiet on the boards. Still learning a lot and enjoying this great community.

I am 31 years old and received an On-X Carbon Aortic on May 27th, 2004. My surgeon recommended the valve due to strong "anti stickage" test results and a design which allowed a higher degree of leaflet opening (not sure how to word that, but you understand). This valve obviously does not have the market penetration other Manufacturers enjoy. Often times since my surgery, I have wondered if I would have preferred a valve made by a more established company with a longer history. I am anxious to learn the results of their "aspirin only" study and inquired directly to the manufacturer this week with the response "these studies take a long time and results won't be conclusive for years". As far as my valve is concerned...it is loud, but still doing the job after a whopping 10 weeks!

My question would be, do Doctors make their valve recommendations on the clinically proven most effective valve or do they give into the pressure from the manufacturer Reps selling the valves? Hopefully, the emphasis is on the former.

Darron
Congenital Bi-Cuspid Aortic Valve
Bacterial Endocarditis
5/27/04 25mm On X Carbon
St. Joseph's Atlanta - Dr. Macheers

 

[ALCapshaw2]

Welcome to our world Darron.

Have you looked at the ON-X Web Site?
If not, I encourage you to check it out.

There has been a fair amount of discussion
of your valve. Click on SEARCH and type in
ON-X and you should be able to find the
relevant posts.

That is considered to be one of the 'third generation' valves which has been designed taking 'fluid dynamics' principles into greater consideration than it's predecessors resulting in greater volume of flow with less turbulence and less liklihood of creating blood clots.

I was VERY IMPRESSED with the design claims. I can understand your concerns about going with 'something new' versus something 'tried and true'. If the website does not address the realiability issue, you may want to contact the manufacturer and ask when durability testing they performed prior to getting approval. Hopefully they will tell you they did X-million (billion?) cycles without a failure or some such statement.

Please keep us informed on how you and your valve are doing. We will be especially interested in seeing if your valve becomes more 'quiet' as you heal and time goes on.

FWIW, I have the old Standard St. Jude Mechanical valve.
Most of the time I do NOT hear it, but I can hear it sometimes when I have a 'pounding' heartbeat or if I inhale and hold my breath.

'AL'

 

[gijanet]

Nice to see another CAVSD mom...........

Nice to see another CAVSD mom...........

not that I would wish that on anyone! Has Chloe had the fontan, or were the surgeons able to perform a complete repair ( and isn't the word complete here somewhat misleading)?

I am sorry that I have absolutely no valuable input for you, but am very interested in what you find out. My daughter Katie, three and a half, has a complete AVSD with quite a few other defects thrown in for good measure. She has undergone three surgeries. Originally, the third was to be the fontan, but last November we found out that her common AV valve's leak had been downgraded to severe. So.............Katie had her valve repaired last April, instead of the fontan. Sadly, one month post-op we found out that the repair was not holding up, and we are back to a moderate+ leak. Thankfully, it has not deteriorated further - we have had monthly echoes since then. Her surgeon said that his goal is to try and wait one year from her last OHS, but if her ventricles show signs of weakening we will have to go in sooner (haha! like I am the one doing the surgery! ). Gameplan: extracardiac fontan plus a valve re-repair or replacement, leaning heavily on the side of replacement. Mentally, I have been somewhat in denial and have not actively pursued our valve options - other than joining this group - nor have I asked her surgeon his preference and recommendations.........yet! Guess I will have to work up to it soon. We have been told by our local PC that homograft valves do not hold up well in this position due to the immense pressure it is under. I have searched high and low and can't find anyone with a single merged AV valve, much less find anyone who has had one repaired or replaced........

Did Chloe have a merged mitral and tricuspid valve? Were they able to split it if they performed a complete repair? Or is this why the mitral valve had to be replaced?

Putting Katie on coumadin scares the hell out of me, so "meeting" another mom whose preschooler is on coumadin provides me with some comfort, although I still don't want it to happen. Katie is always banging herself up; she wheeled around a corner too fast today on her trike and scraped her knee up good. Since she is on one baby aspirin tab a day, she bleeds like a stuck pig already. I can't picture her on coumadin..........

Anyway, so nice to "meet" you and I will be interested in how Chloe is doing....

Take care and God bless...............

 

[Emma]

nice to 'meet' you too!

nice to 'meet' you too!

Hi Janet,
I know what you mean about not wishing anyone into this position - not good is it?! Although having said that, i do find myself having more and more days now where i think of Chloe as a 'normal' child and forgetting about her CHD - which earlier in her life were very few and far between.
I also relate to what you're saying about our 2 children being quite rare. I am in touch with a LOT of other CHD parents and have only ever met one with CAVSD who has a mitral replacement through CAVSD (incidently he is now 21, had the valve when he was 5, and is doing very well!!)

I got your message - thankyou!

Not sure if this should be in another thread now as it's not about On-X valves but here i go anyway...

To try and answer your questions...
yes Chloe has/had a complete AVSD so her tricuspid and mitral valves were merged. When she had her first OH surgery at 6 weeks of age, her surgeon, Marcus Haw, separated the valves and patched the huge hole. He had hoped the valves would hold but unfortunately the mitral didn't and the regurg got worse and worse. He tried once more to repair when Chloe was 18 months but that also failed within hours of the surgery so he did a cath to check the pressures etc, found they were too high again so he spoke to us for a couple of hours about the options, which leant very heavily towards replacement and we agreed with his suggestion to replace the mitral with an On-X valve.

So thats how Chloe ended up with her replacement and has done very well with it. Her tricuspid has a mild - moderate leak but they say this should never cause her any problems.

To my knowledge, the mitral valve cannot be replaced with anything other than mechanical if repair doesn't work. Her surgeon once told me it's the worst of the valves to have a problem with as it has to take a lot of pressure in the heart. Having said that though, the replacement in a child isn't as bad as it sounds or as some cardi's make it out to be!!!

As for warfarin/coumadin, i understand your worries there too. When they originally talked about a replacement for Chloe, one doctor made it sounds like the worst thing in the world as she'd be on warfarin, but until he has lived with a child on the drug day to day then i would now suggest he shut up!!! 'Cos he put the fear of god in me and actually it's not too bad at all. I know their concerns were that having for Chloe, having children whilst on warfarin is a pain and that teenagers sometimes have concerns with it (he listed peer pressure, drinking and piercings as some of those problems).
I have my worries about her being on it, as any mum would, but in reality she does very well.
She has banged her head and other parts of her many times, as all children do, and gone to A&E a couple of times for bad bumps to head and stomach (when a little friend punched her in the tummy!! Nice!!) but been fine. She does get horrendus bruises, whether her INR is high or low that day and once had a nose bleed that lasted three days, but what i have just listed is the worst problems she's ever had and i think considering she has been at nursery/pre-school every day since she was 10 months old, goes to indoor play areas, parties, fair etc etc that's not bad! I tend to be quite calm about her bumps and bangs now when she has them and so, in turn she doesn't panic if she's hurt.
Chloe knows what warfarin is, has started to swallow tablets whole now and tells people that her 'zip' is there cos she had a poorly heart that the the doctors mended for her, but other than that she has no idea she's any different from other children and no-one else ever guesses either!
She's starting school in less than three weeks and i did have concerns about that (mainly about a rougher playground and physical activity) which thankfully, Al and Ross have helped to allieviate (see the post under coumadin and warfarin and school).

I really do waffle don't I?! lol
I'll leave it here and if i didn't answer something for you then feel free to ask.

I hope Katie is well at the moment!!

Love Emma
xxx

 

[gijanet]

Oh, Emma, thank you so much..........

Oh, Emma, thank you so much..........

for taking the time to respond to all of my questions. I can't begin to describe how comforting your words are and how much better I feel about what our future most likely holds. Al, Ross, et al. have tried to ease my fears, and have somewhat, but it is so much more reassuring to actually talk to someone who is living with a rambunctious young child on coumadin.

Katie's latest feat was attempting to fly from the top of the back of the couch - no more Peter Pan movies for her! Despite the valve leak and satting at 77, she is really doing well. She does occasionally get winded and turns smurfy blue, but, other than that.............well, and the zipper down her chest, most people would never suspect that her little heart is so buggared up.

You have given me the courage to go ahead and e-mail Katie's surgeon and ask about his valve preference ( probably not tonight as it is a tad bit late, but sometime in the next week.) I'm going to ask about the On-X valve, too, to get his thoughts on this. I will definitely get back to you and let you know what he says about it.

Thank you again so much. I am such a cad, too, as I noticed when I reread my post that I didn't tell you how happy I am to hear that Chloe is doing so well............and not just for selfish reasons, but it IS definitely reassuring to hear that she is doing so well.

Take care and God bless..............

 

[Anne-Marie]

on-x aortic

on-x aortic

Hi Emma,

I have an On-x aortic valve. At the time of my surgery, April 2003, I was told that the On-x was the only type of mechanical valve the Heart Institute here in Ottawa was using. Everything seems to be going fine for me. I just saw my cardiologist last week and he said my heart sounds were "crisp"....I suppose that's a good thing