On-X

[DiscoG4]

Hi there,

I found this excellent site a couple of weeks ago and am facing surgery on 28th March this year for AVR. My condition was discovered as a result of a medical for a commercial pilot’s licence here in the UK and as a result of what was found I have been permanently grounded, having had my private flying licence revoked as well. The reason for mentioning this is that it’s a bit of background for the question I want to ask the readers of this forum.

I’ve resigned myself to the fact I will never regain my flight status and have opted for a mechanical valve after chatting with the surgeon here in Bristol. The main reason is that I am pretty freaked out by the whole thing and really wouldn’t want to face the operation a second time! The surgeon tells me that as an NHS patient (UK health service) I will be fitted with a Sorin valve. However I have asked about the On-X valve as I’m very interested in the reduced anti-coagulation. The Civil Aviation Authority here in the UK won’t give a full private flying licence to anyone taking Warfarin but if in the future it was possible to just take aspirin, this would be my choice as there may be a chance I could regain my full PPL.

If any UK readers are in the same position I would be interested to find out the response of their NHS surgeon over this issue and whether they were allowed buy the valve themselves. My surgeon is indicating that the only valves that can be implanted are those that the NHS stocks, the inference being that On-X is not available in the NHS.

To the wider audience, I would be very interested in any feedback any readers of this forum have over the Sorin valve.

Many thanks for your help and best wishes to you all.

Steve

 

[Ross]

Hi Steve and welcome aboard.

May I ask how old you are? I'm assuming your still pretty young, but if your a bit older, what tissue valves are available to you? ON-X would be nice, but they are in the very early stages of the asprin trial and it may be years before it's accepted if indeed it's accepted at all.

I know in the U.S. as far as your Commercial certificate goes, your done, but they will, with medical approval and frequent medicals, issue a new certificate for Private. I'm hoping you can dig into the regulations and find a clause it in it to at least keep you happy. I know I'm done and I miss it terribly. I was within a one cross country solo of getting my Private certificate.

I can't speak on the Sorin, so I'll leave that for the others, but if your age is about right, you might consider a bovine tissue valve. I do agree however, that this is not something you want to have to do again and again. Once is plenty. I've done it twice.

Again, welcome to the forum!

 

[Andyrdj]

List of available valves

List of available valves

Just wondered if they gave you a list of all valves the NHS can opt for?

Is it different to those with european approval? And would they let you pay for your own if it wasn't on the NHS list but was on the eurpoean approved list.

 

[DiscoG4]

On-X on the NHS

On-X on the NHS

Ross,

Many thanks for your reply, I'm 39 BTW. I have been advised about the biometric valve replacements and to be honest I discounted them due to the requirement for additional surgery, my surgeon indicated that the life of these valves could be as little as 10 years and that the chances of success decrease with each re-do.

Andy,

No idea, my surgeon doesn't seem keen on discussing the issue any further and didn't provide any information on what valves were available on the NHS, if I do get any further info, I will post it here.

Many thanks

Steve

 

[Ross]

Steve that is correct. I was thinking you might be closer to later 40's or early 50's, then maybe and only if you could get it, a new treated valve that may last 20 years, key word "May". Tissue is still an option, but I agree with you 100% on not wanting to do this again. You not only have more scar tissue to deal with, but each time it is harder and harder to recover from. If I were you, I'd insist on a list of approved valves from my surgeon. There are too many choices available and you should be able to choose what you want and not settle for what you get. It's not always possible however. Sometimes anatomy will not allow your choice.

You've probably been told a bunch of horror stories about Coumadin. I'd like to tell you that much of it is untrue. You can educate yourself and protect yourself from the garbage by visiting our resident experts site, Al Lodwicks www.warfarinfo.com There is a wealth of information to be had there about Coumadin.

 

[Andyrdj]

Willing surgeons

Willing surgeons

I have to say that despite the fact I wonder if my own hospital is a tad conservative (see post on this matter) my surgeon was willing to point out many of the more established alternatives, I discussed in a letter the possiblity of Ross Procedure, experimental tissue valves, and why my I had a personal bias against Warfarin.

I expected to be asked to "do as I'm told", but surprisingly he agreed that my reasons for wanting non-mechanical were valid and that I had "adequately listed the cons of warfarin treatment". He stressed that they would never force me down any route I was unhappy with.

My own NHS surgeon said he personally used a carpentier-edwards mechanical valve and St Jude Bicorp tissue valve, if that helps.

So I suspect your surgeon is being a little close with you here, and could do with telling you more.

 

[tobagotwo]

The St. Jude valves with Linx and BiLinx anticalcification treatment are not yet approved for use in the United States. The Toronto SPV, a stentless porcine valve without anticalcification treatments, is the tissue valve that St. Jude markets here.

In the US, tissue valves are generally chosen between the bovine Carpentier-Edwards models and the porcine Medtronic Freestyle and Mosaic models. The Freestyle can be used with or without the root. Both types offer anticalcification treatments and low-pressure fixation processes.

Best wishes,

 

[Dustin]

Disco,

Perhaps you could ask Emma about the On-X in the UK. Her daughter has one, so I'm a little confused why you wouldn't be able to get the On-X if you insisted.

 

[DiscoG4]

On-X on the NHS

On-X on the NHS

Dustin,

Many thanks for your reply, I'm presuming that Emma is her username and it would be OK to send her a private mail.

On a separate issue, I'm also interested on the subject of home INR tresting, but suspect that this question would be better placed in another area of the forum.

Once again, many thanks for your help.

Kind regards,

Steve

 

[tobagotwo]

I know there was discussion about the Sorin following in the footprints of the On-X, if it was successful, as there are a lot of similarities between the two.

However, you would be dealing with an unknown result and another extended testing cycle. I am not aware of Sorin holding trials for aspirin ACT at this time.

As a valve, the Sorin is certainly an excellent choice on its own merits. It's highly respected and is generally considered to be as "next-generation" as the On-X. That status may change if the On-X is cleared for aspirin ACT, which would put it in a class by itself. But they could potentially get back on a par again if Sorin decides to run aspirin ACT trials and is also later cleared for aspirin ACT through its own testing. I don't know if they will try.

Again, for both On-X and Sorin, it is still all speculation.

Note for those in the US: Sorin doesn't sell this valve in the US, as it's not approved here at this time. Its US partner sells a different mechanical valve.

Best wishes,

 

[Emma]

Hi Steve,
Got your pm thankyou... thought I'd reply on here incase it may benefit anyone else?

Chloe had her ON-X on the NHS in 2001 - she was the first child in the UK to recieve one, so yep, they definately are available on the NHS but I don't know about which hospitals use them or if they all do yet? Chloe is under Southampton General and Chloe's surgeon, Marcus Haw is a big fan of them. You could try insisting on that valve and surely your surgeon could at east research it for you. Otherwise another option would be to try another hospital - as I say, Southampton definately use them, so they could be an option for you.

Chloe also uses coaguchek, the home testing system and its brilliant!! I cannot recommend it enough! I love it - its meant very rare venus bloods and hospital visits and a much more stable INR as I can do a quick test whenever I think her INR may be slightly off rather than waiting to find out at a hospital test.
Have you looked on this website for info? Theyve been very helpful to us in the past and actually gave us Chloes coaguchek when they heard about her story...

www.anticoagulationeurope.co.uk

You can buy the machines directly from their makers - Roche - about £400 I think??? But I'm sure someone will correct me on price.

Am typing this very fast so hope it makes some sense as have to rush off to do tea now but will come back and try and add more to this later.
Nice to 'meet' you!
Love Emma
xxx

 

[Gemma]

Hi Steve,

My boyfriend Jim got a Sorin valve in December 2003 at the CardioThoracic Centre in Liverpool - his surgeon preferred it to the St Jude because it has better pressure gradients and that kind of thing. He was 26 at the time. Haven't had any problems at all (bar an episode of atrial flutter 4 weeks post-op, but I think that was due to the surgery rather than valve type). His left ventricle was back within normal range by a month after the op, and he's back doing everything he did before and more.

I suspect that primary care trusts around the country have purchasing departments which decide what valve is going to be used in their area of the country, but it sounds like your surgeon is being a bit unforthcoming over some aspect of the choices open to you.

Jim has a Coaguchek machine - available direct from Roche they cost £399, or you can get an interest-free repayment option. The testing strips are available on prescription. Jim hasn't managed to get his clinic to agree to him solely testing at home so he still goes for checks there (well, at his GP's) every 12 weeks, but having the Coaguchek means he can keep an eye on his INR and because of that has managed to stay in range.

If you have any other questions, just ask and I'll try to answer them.

Gemma.

 

[DiscoG4]

On-X

Emma & Gemma,

Many thanks for your informative replies, I shall certainly be in touch with my surgeon, owing to the close date of the surgery, I think another hospital may be out of the question at this late stage, I don't really want to have to wait any longer and I'm now symptomatic and just want get it over and done with!

Kind regards,

Steve

 

[DEBBIE D]

Mechanical valve

Mechanical valve

Hi Steve,
I only found this website recently too. Wish I knew about it earlier. My murmur was also picked up at a medical. I had a St. Jude mechanical mitral valve fitted in April 2004 in Leeds. My surgeon was hoping for a valve repair so I never looked into the options of different valves but he couldn't repair it. So I was fitted with his recommendation, I suppose.
I take warfarin daily and have regular INR checks at my local health centre.
I wish you all the best for the 28th and hope you get your pilot's licence back as soon as possible.

 

[DiscoG4]

Good news and Bad news

Good news and Bad news

Debbie D and all,

Many thanks for your replies, this is truly an excellent resource, surgery postponed to 3rd April, jolly old NHS eh! On the plus side, surgeon has agreed with me and due to the delay has been able to order an On-X, so a bit of a result on that front!

All the best

Steve

 

[RCB]

Great News Disco

Great News Disco

It looks like your on your way with a great valve!