Hi, I'm new here and struggling with a decision I thought you might be able to help.
I am 55 year old male with severe aortic stenosis, just been to see the surgeon and came out just as confused as when I went in. I need my valve replaced, but with what? he just kept saying it's up to me! I understand that, but I am having great difficulty in deciding what would be best.
your views would be appreciated.
Thanks.
Hello and welcome to the forum! The choice is between tissue and mechanical valves. Typically a tissue valve will last 10 - 15 years although the latest ones may achieve (predicted) 20 - 25 years if any necessary lifestyle changes are made, whilst a mechanical one should last a lifetime. The disadvantages with the mechanical one is that it means taking warfarin. However, management is easier than it was if you are happy to do home monitoring. Even with a tissue valve warfarin may be required if there is a clotting issue. For a younger active person, particularly if they play contact sports, a tissue valve is more appropriate. They would also be relatively young when it needs replacing. However, in your situation it would probably need replacing in your seventies or even eighties - not an ideal prospect. So I would recommend the mechanical valve. I hope this helps in your decision process.
Hi Hartly
Like Michael has said, a lot of it comes down to your age, lifestyle, exercise etc. and at the end of the day it’s a personal choice. I had my first AVR at 52 and had a tissue valve. I was told it should last about 15 years. Unfortunately it started leaking after two years and gradually got worse resulting it my second AVR at 59. This time I had a mechanical valve as in between ops I had another major op, a splenectomy, so my immune system is severely compromised. As another AVR in my 70s/80s wasn’t an exciting prospect I went for mechanical.
If you do any sport or work where you are likely to get knocks, particularly things like contact sports, then you will either have to give them up or go with the tissue valve, as the warfarin puts you at much higher risk of bleeding. Also bear in mind that if you go for one of the newer tissue valves in 20 years time they may be able to replace it using keyhole, they are already doing some. I just didn’t want to risk them having to do OHS, plus I’m a couch potato!
I have had no problems getting my warfarin levels steady and although there are dietary restrictions you soon get used to them.
Good luck.
Wendy
Hi Hartly, welcome to the forum and the AVR club! I was in exacly your position last summer - long-term aortic stenosis that had got progressively worse and now (at 50) time for the chop. If it helps the mental and emotional turmoil you're feeling is completely normal and to be expected - for me it was almost worse than the operation itself.
Right, valves. My first post on this site last summer was exactly the same as yours - basically help! I had assumed, at 50, it was basically going to be decided for me and the likelihood was I would need to go mechanical and lifelong Warfarin. But I was given the option by my surgeon - and my reaction was the same as yours, "hang on, you're the surgeon?". After a lot of reading up and soul-searching I decided to go tissue, and got an Inspiris valve (which is one of the new generation) just because Christmas.
My reasoning? Yes the mechanical valve "should" be lifelong but, as my surgeon pointed out, there's no guarantee that you'll never need another operation. I also just didn't like the idea of having to manage Warfarin. Don't get me wrong, many people manage it perfectly well and swear by it, but it is a life change that takes time to adjust to. By comparison, I'm on a low dose of aspirin each morning and a blood pressure tablet (but that's not actually connected to the valve).
I also reasoned that, even if I get 10-15 years Warfarin-free well a) that would be good in itself - among other things I'd like to travel a bit and not need to always be worrying about it - and b) who knows how the technology will have developed by then (and there are new generations of both valves and anti-coagulants coming through apparently) plus new procedures like the keyhole TAVI up the groin are gradually becoming more commonplace, though won't be for everyone (kind of depends what size of valve I believe). So essentially I was happy to take a bit of a gamble, knowing if I went tissue I was accepting I would need a new valve "at some point" but weighing that up against the whole Warfarin issue.
If you get a chance, do ask about the Inspiris. It's a new valve from the US that is so new there is no clinical data about it yet but it's coated in a special anti-coagulant that, supposedly, could mean it lasts 20 even 25 years. But I guess I'll find out! Not all hospitals offer it apparently (I was at Guy's and St Thomas's in London).
Of course there is also no guarantee that it'll plain sailing anyway - your valve could start to leak and need replacing sooner than that but, as far as I know (and happy to be corrected) this can happen with either type. But, for me, so far so good.
Ultimately, after much toing and froing and going one way and the other mentally and getting in a right confusion, I sat down my wife (on the way back from seeing the surgeon in fact) and she pointed out a great thing. The point of which valve to go for is that there isn't a "right" choice. There are genuine downsides and upsides to both. So whatever choice you make, make it your choice, own it - don't regret it or think "what if?". That way, whatever happens, ultimately it will end up being the right choice! if you see what I mean.
By the way, check out the posts by Pete (ticktock61). He had an AVR last autumn and did a (sometimes a bit graphic) blow-by-blow account of his time in hospital (also GSTT) and recovery which I found really helpful. I've tried to do a bit the same (they're called How my AVR is going so far), but mine aren't nearly as good. Finally, Channel 5 last year live-streamed an AVR being done at St Bart's. I wasn't going to watch it as I'm squeamish about these things but ended up doing so and was completely glued and actually found it really reassuring because for the surgical team it was bread and butter, almost mundane. I think it's here my5.tv/operation-live/seaso...
And finally, finally, use us "hearties" on this forum - it's what we're here for and if we can help we will.
Good luck mate and hope things go well for you. The op isn't fun but it is life-changing (in a good way), believe me. Keep us all posted!
Nic x
Micheal, Fredders and Nic
Thank you for your advice and kind words.
Yes Nic it does sound like i'm on a similar path. I have been thinking along exactly the same lines as you, still relatively young, no guarantee that mechanical will last a lifetime, what will they be doing in 10+ years.
My stenosis is a result of my Ankylosing Spondylitis, so I known for about 15 years that i would need surgery at some point, but it never really sunk in. The reality is a bit overwhelming.
I have been reading about the valves by Edwards, do you know if the Carpentier-Edwards
PERIMOUNT Valves are suitable and if the hospital i'm currently attending (Royal Sussex County Hospital) doesn't offer the particular valve I want, can I select a hospital that does. I know these are probably questions for my surgeon, but you all seem very knowledgeable.
I will be watching the video tonight and reading all the blogs, thanks Nic.
Thank you again all.
I shall keep you all posted
Hey Hartley. That's great. Glad to be of help! Just to clarify a few things. I wasn't meaning mechanical valves wear out; they don't - that's rightly their big selling point. Just you never know what's going to happen in the future with potential complications etc, which was certainly one of the arguments that swung me. I don't know about those other valves but Edwards do the Inspiris, so same company. But beyond that no idea I'm afraid! You can nowadays choose your hospital or surgeon as I understand it - I didn't because I was already with GSTT for cardiology. I'd lived in London and just kept it going when we moved away as I knew they were one of the best in the country and I travel to London frequently anyway. But certainly worth looking into if you're unsure about your local options? Feel free to DM if you want more advice anytime by the way as, as you say, it is all a bit overwhelming at first. Good luck!
Nic
Hi Hartley. I had a AVR 33 years ago. I didn’t really get a choice of mechanical or tissue. I was told as I was 32 a mechanical one would be best as it should last a lifetime. I understand the warfarin issue and it bothered me at the time but to be honest it’s not that much of a problem. Being able to self test makes a big difference. With the internet now it’s easy to get gelled up on these things. I really didn’t know much about what was happening back then but all things considered I’m glad I had the mechanical one, and I’m still here 👍
Good luck x
Hi Hartley
I had a Mitral & Aortic valve replacement in Sept 18. I am a 48 y/o active tennis player and do various other exercise activities. I had both mechanical as the Mitral is only mechanical (if I am not mistaken) so made sense to do mechanical on both. I was not happy about the Wafarin as I had been on it years ago, however I must say it is much easier to monitor these days and I still enjoy a glass of wine and my regular greens!!
Personally I would not not want to go through open heart surgery again to replace valve unless it was critical. I am back playing full contact sport and very happy withy decision.
Good luck
Laura
Hi there I had a mechanical aortic valve fitted in 2005 at the age of 48, and have no regrets whatsoever, yes so you have take warferin that’s Easley managed especially if you get yourself a home monitor. You can take it on holiday to give you extra peace of mind. The other good thing is am not waiting and worried at the prospect of having another opp when the tissue one wears out
Hi again I forgot to mention as for stopping sports I have found no reason to, I ski each winter and mountain bike all year
Hi Hartly,
I may as well post my thoughts too but to be frank they are in line with the above responses.
I had a bi-cuspid aortic valve, born with it, which eventually became too leaky and in 2005 (aged 54) it was replaced with a bi-leaflet bi-carbon mechnical valve. I felt 10 years younger post op!
Yes, I have to contend with lifetime use of warfarin but I self monitor so I don't need to keep going to the surgery for INR tests. Neither the valve nor the warfarin have restricted me in any great way. Now that may be as a result of my gung-ho approach to life but my cardiac surgeon said I should try to live as normal a life as possible else what's the point.
I thought I would bleed more easily or bruise eaisly on account of the warfarin but I have yet to see evidence of this. In fact when I do my self tests if I bleed more quickly after I've jabbed myself I think to myself "Oh, my blood must be extra thin today." but it never is.
I suppose the only thing I'm aware of is that some vegetables can drop your INR like a stone, spinnach, especially mixed with olive oil will lower your INR quickly, so I tend to be aware of vegetables with a high vitamin K content but I don't stop eating them.
Of course this can be handy if your INR is too high. I once had to go into hospital and they wanted to lower my INR quickly before surgery and they gave me the tiniest drop of concentrated vitamin K to swallow ... tasted like rotten cabbages! A sensible approach might be to monitor INR more closely (test sooner) if you know you've just eaten a lot of vitamin K rich vegetables say after Christmas dinner if you've eaten loads of brussel sprouts.
The other thing I keep away from is blueberries but I'm not a great fan of those anyway.
So in general I suppose there are things to beware of but I don't find it too restrictive.
As I say I guess I take a less than cautious approach than some so I would't recommend it to everyone ... an upside to taking warfarin though is that in latter life it may have a protective effect against strokes - I was diagnosed with AF a few years back and my GP's first words were, "Well you're already on warfarin so that's good."
Which ever way you go, mechanical or tissue, you'll feel a lot better afterward I'm sure. I hope all goes well for you Hartly.
Regars,
Phil
Thanks Phil, these are great arguments for mechanical and they do make sense.
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