Tissue Valves in UK

[Andyrdj]

Would like to hear as many different examples of people who have receied tissue valves in the uk. Not mechanical - if anyone wants to know that, I suggest creating a new post.

I would also like to know
- If you received this on the NHS, or
- if it was private, where? And how much did it cost

Mainly so that I can be sure that when I need an op, I know where I can go to get the valve I want. And isn't that the most important thing for anyone here?

I should add that I'm most interested in recent operations - it's fairly useful to know what was going on 15 years ago, but up to date information is mostly what I'm afters.

Cheers me Dears

 

[OldManEmu]

I look forward to responses

I look forward to responses

Andy I hope someone responds to you as I am interested to hear of the UK experience, however I don't think we have to many UK member that have tissue valves, I am not sure why that would be. Will the NHS pay for a VR with a tissue valve in a patient that is certainly going to require a redo?

 

[sue943]

There was a young woman (about 28) on my cardiac rehab course, she had a Ross procedure I think from what I can gather - that is when they use one of your own valves to replace one valve then a tissue valve to replace that valve?

We have all our OHS in England, most on the NHS. As I have said, I went private and the day before surgery was asked if I wanted tissue or mechanical.

If you are happy with the cardiac surgeon in the Northern General but want to go private, s/he will almost certainly have somewhere to perform private surgery. I was very happy with mine, but that was in Surrey. I have to say that if I didn't have BUPA I wouldn't dare think about private surgery, it isn't the quoted cost (unless they do a pre-arranged price) that would worry me, it would be just in case I 'did a Tonia' and ended up having several OHS and an extensive stay in ICU - that would blow a huge hole in finances.

 

[Andyrdj]

To OldManEmu

To OldManEmu

I expected a fight with this, but my surgeon told me it was perfectly acceptable to decline a mechanical valve, since I had "adequately listed the drawbacks of warfarin". He also gave me honest advice on when I might expect a re-operation.

I suspect, however, that the majority of patients do not research the options in detail and that they funnel them down the mechanical valve route by default.

With good intentions, but it strikes me that they are very conservative, would rather go with tried and tested for most patients, although clinical trials must be happening in the NHS somewhere.

I'd like to point out, though, that they did do my first repair knowing that I'd require another op. My surgeon is definitely pleased with the time I have had with "nature's valve"

 

[mntbiker]

He also gave me honest advice on when I might expect a re-operation.

what are his expectations for longevity?

 

[DiscoG4]

Tissue Valves on the NHS

Tissue Valves on the NHS

"I suspect, however, that the majority of patients do not research the options in detail and that they funnel them down the mechanical valve route by default. "

Not sure that the above is the case with all Trusts, my surgeon listed all the available options including the Ross procedure and indicated all were available within the BRI.

It was my choice to go down the mechanical route after explanation of the various advantages and disadvantages of each approach. I'm 39 and he stated that no surgeon will guarentee that a tissue vavlve was last longer than 15 years, so a redo was almost certainly be required at about 55. To be perfectly frank, now I have had the operation, I never want to go through the experience again and so am more than happy with my mechanical valve!

Additionally, my experience of patients within the BRI is that whilst CABG patients seem to be older and less inquiring of the operation, due to the much smaller number of VR patients and the broad cross-section of ages, a greater percentage are far more active in researching their condition and options.

My only problem (which was resolved) was persuading the surgeon to go for the On-X valve, which was not a 'stock' item! I indicated I was willing to pay any additional costs incurred, but apparently the NHS doesn't have a mechanism for dealing with this yet!

All the best

Steve

 

[Andyrdj]

Replies

Replies

To Mtnbiker,

Longevity is around 15 years for the existing C/E Perimount valve - I have another post here discussing this.
http://www.valvereplacement.com/forums/showthread.php?t=15720

My own desired valve is the C/E magna, a sucessor to this with improved anticalcification treatment. A bit risky in some ways as follow up is minimal, I know, but C/E perimount is 20 years old technology. I want state of the art, and this is built on improvements to the old design.

To DiscoG4: thank you for that info about getting the non-standard on-x, which I take it the trust paid for eventually? Perhaps I'll offer to donate the difference to a research fund!

 

[neal1234]

Andy

As we have discussed in previous threads I had a homograft in October 2003, this was done privately as I am fortunate to be part of an employers medical scheme. Ideally I wanted the Ross procedure but was not suitable as my valves were not the same size to undertake a swap. I agree that surgeons may not explain all the options, my first surgeon did not, only offering me a mechanical valve, second who completed the operation whilst specialising in the Ross explained all the options and believe if I had been a NHS patient I would not have been treated any differently.
Interestingly through work I know two people who are due to have aortic valve replacements both are NHS patients, they have both been offered the Ross procedure, one was due to have surgery in January which was cancelled, he is still waiting for a new date with the delay being due to having problems locating a suitable human valve.
From this site their has been a lot of talk about the newer tissue valves, notably the on ox, I would be interested to find out if NHS surgeons offer these options.
Lastly I understand that on the NHS you are entitled to two consultant referrals, and therefore if the first does not explain all the options look for someone else, downside as we all know is the dreaded waiting list, as once you are referred you are at the back of the queue.

All the best

Neal

 

[Andyrdj]

Thanks so far

Thanks so far

I originally just wanted tissue valve info, but the on-x is useful to me as I would imagine it's equally a "non-stock" item in the NHS.

I'm getting impatient for my next appointment, and paranoid that I'll go and collapse and they'll put a valve into me without asking which one!

Does anyone know if you can leave a record of your wishes in this area? My girlfriend knows, but would like a backup.

 

[John Turner]

Tissue valves in the U.K.

Tissue valves in the U.K.

I had my aortic valve replaced with a pigs one at The Royal Brompton last year. I had a choice of Ross , Mechanical, or tissue. however, due to waiting list I changed surgeon and the latter one stated that the Ross was not proven in someone of my age (43). Very little information was given to me and I had to do most of the research myself. I did not want to go onto warfarin and the doctors accepted that decision and did not at any time try and persuade me to have a mechanical valve.

Can anyone give me their opinion of the Congenital heart unit at BRI. Do you always get to see your consultant at the check up of is it just a registrar. Also is it standard to meet the surgeon before the operation and how much detail is explained to help one make a decision?

 

[DiscoG4]

Bri

Bri

Hi there,

I can't answer your questions about the post-surgery check-up as mine is not scheduled until 12 June, will let you know! I believe it is standard to meet the surgeon prior the operation, I saw mine in January of this year, but didn't see him again until post operation. The surgeon in my case explained all the procedures available and ran through what in his opinion would be the most suitable option, but stressed the final choice was mine.

It wasn't a massively long meeting (about 30 mins I recall), but I'd already done quite a bit of research and the cardiologist had also chatted to me about the op (at Southmead).

I get the impression the BRI is a bit of a conveyor belt though! ICH and HDU very good, wards good to with a good spruce up, but I think the NHS trust may have other concerns at the moment!

All the best

Steve

 

[Lotti]

Lotti's Choice

Lotti's Choice

Hi
I had valve surgery in February at the UK's heart centre...Glenfield in Leicester. I was given complete choice on which valve even to the individual make / model not just mechanical or tissue.
I went for the new third generation Medtronic Mosaic Porcine Valve. It had new anti calcification properties and they are hopeful that it would last longer than the second generation valves which did not have this. The second generation ones were being proven to last an average of 15 years so 20 years could well be the bench mark for this valve. I was given the opportunity to speak twice at length with my surgeon about the op and because I was still undecided at admission they got nearly everyone in the hospital to come and talk to me too. I went NHS, but do know that my valve was about £3-4,000 and my pacemaker about the same amount. Knowing that there are 15 people in the theatre with you, two surgeons, two assistant surgeons, three anethatists, four nurses, and other people monitoring you, then of course you get your own nurse in CICU for a coule of days, plus all the other people involved when you get to the HDU and then the ward I hate to guess how much the whole thing would cost if you went private. Oh I'm 37 so they definately are aware that further surgeries will have to take place. About 60% of people in the UK apparently are choosing tissue now.

Hope this helps


Lotti

 

[Andyrdj]

Indeed!

Indeed!

Lotti, that is the best response I could have hoped for! The Mosaic is my second choice, and certainly not one I'd be unhappy with!

Could I by any chance ask for your surgeon's name? I'm wondering if the UK heart centre is more pinoneering than most, although the Northern General is among the best for survival rates

 

[Brad]

Mine is a tissue one. Done at the LGI which isn't far from you. For the record, mine was done by a Mr Munsch!

 

[Andyrdj]

To brad

To brad

Could I ask which make and model you received? Please be as specific as you can.

 

[Brad]

Could I ask which make and model you received? Please be as specific as you can.

Make? It's tissue. Pigs or wherever it came from aren't branded.
However... Pericardial (whatever that means?). Model 6900P if that helps.
Although what's suitable for one person is not neccersarily (never can spell that!!) going to be suitable for another.

I got no choice whatsoever. I wasn't sure if it was going to be repaired or replaced, so didn't know what they'd done until I woke up.

 

[Gemma]

I suspect, however, that the majority of patients do not research the options in detail and that they funnel them down the mechanical valve route by default.

Not true in Cheshire either, Jim's surgeon went through all the options with him prior to the surgery, discussed pros and cons of each option. I think the surgeon's least favoured option was the Ross (the reason he gave was that he didn't see why Jim should be left a two-valve patient rather than just one), but he'd have been equally happy to put in a tissue or mechanical valve.

 

[Andyrdj]

Very Drole!

Very Drole!

Ok Brad, that, from my list of Carpentier Edwards products is the Perimount plus Pericardial bioprosthesis Mitral Valve - see the "valve prices" post for the index.

It's the "tried and tested" pericardial valve that's been used for the last 20 years in the NHS. If you're curious, visit here

http://www.edwards.com/Products/HeartValves


Gemma - you could be right here, although until I did some research it was almost taken for granted by my docs that I would have mechanical. It makes you feel like a good little boy, eating your greens as expected. To know the alternatives made me feel back in control.

In Brad's case, he has been given a tissue without being shown the alternative makes on offer (although he has got a good one!)

 

[lance]

Good for you Andy

Good for you Andy

Your thorough search leaves me amazed at your tenacity--good for you.

There is a paper "Recommendations for the management of patients after heart valve surgery" that you will probably find very informative. It was published in the European Society of Cardiology in 2005 so is right up to date and the study was done in the UK.

Because of your feelings towards warfarin you will find under Recommendations (iv) a very interesting paragraph regarding warfarin. This is the first reference I have seen about educating patients about anticoagulation therapy. It's about time and I hope it is done prior to implantation.

How I wish I had known enough to do the thorough search you have done instead of just accepting what the surgeon told me: e.g. warfarin is just a little pill you swallow and have have your blood tested every so often. What a farce! Actually I think it's downright misleading. The only truth about it is you take it for life.

More to the point, here in Canada, the recommendations to surgeons is to give every patient under 75 a mechanical valve. The only contraindications are an "unableness or unwillingness to deal with ACT. It depends on life expectancy--nothing else. Until a patient has encountered warfarin there is no way of knowing what ACT is all about.

Once again, good for you. I know you will be happy with the valve you choose. I wish I'd had your smarts at the time.

 

[Andyrdj]

Thanks Lance

Thanks Lance

Hope this will be of use to everyone - this site has been really helpful for me to find my alternatives, and to know that despite the tutting and shaking heads of the surgeons, my option was not unheard of after all.

Folks, to recap - I'm especially interested in the particular make people have if they know, and, importantly, if they were offered a choice of model.

This will of course apply equally well to those who choose a mech valve - I suspect most fully informed mech valvers would want the ON-X.