Aortic valve replacment

[presely]

Hi just been told i need a aortic valve replacement open heart surgery any advise would be welcome. I am a 61 yr old male. Mechanical or tissue valve.

[080311]

Hello presley

Welcome to the forum, not a place you ever thought you would be joining. When we are told we have a heart issue it’s a very scary place that we are looking into, but believe me it’s not as bad as our imagination makes it.

I had Aortic valve replaced and bypass done 4 years ago, age 68, and I have a tissue valve, (pigs) I went with what my surgeon thought would be best for me.

You have the choice of tissue 10-15 years shelf life, mechanical life long shelf life but you need to be on warfarin life long, and depending upon your life style that could give you a few problems, also members here on the forum say it ticks 😂 there is a new valve now not a lot of data which you don’t need warfarin and the shelf life is longer that a bio tissue valve.

Having a conversation with your surgeon will help you get your thoughts in order. If you have any questions about the surgery just ask there are plenty of us to answer. What I will say is do all the exercises after the op you will be given breathing exercises I called them huffing and puffing, and a coughing one. These are done hourly They help your lungs, they take a hit as well as your heart, remember they collapse when we are on bypass so need help to fill all the little pockets again so when you get home keep doing them.

All the instructions you will be given no arms above your head no pushing or pulling movements, you have to let your sternum heal 10-12 weeks. It’s like any broken bone, even though we are wired up it still as to heal.

As I have said anything you want to know just post and someone will be along to help. You are now a member of the Hearties family. If you just need to talk or a shoulder to lean on someone will always help.

Best wishes Pauline

[Blackcatsooty]

Dear Presley

Valves are improving all the time. If you are NHS then cost will be an issue.

A way forward is to ask your surgeon to chose. He will be the one who needs to do the work, and until they access your heart, it isn't certain what they will find.

I paid for my op as nhs was closed in April and i had weeks to live. So i got some pretty heavy duty advice. And any valve I wanted. The end choice was pig. An edwards inspiris i think.

Surgeon said he wanted to use this as it was established and proven.

I was 72 ,

The biggest discussion was OHS or TAVI. I assume you have already had that discussion.

My little valve is working away and i cant tell it is artificial.

Colin

[TooLate4Daughter in reply to Blackcatsooty]

Hi Colin, Great to hear you got sorted and nothing can detract from being pleased for you. I'll be open though and thank you for being open on this and your other posts. We feeling pretty bitter about state of NHS for non-COVID time critical surgeries in July, August let alone April and remain concerned for all those waiting now. I'm trying to see if we as a nation have an issue here but not easy to get clear data, answers from NHS, ONS data. Where did you get your surgery, with who? Cheers, Paul.

[Nic25]

Hi Presely. First off good luck! It's never fun being in this position and the whole mental side of the build-up - the terror, basically - is a big deal. So a) use us, as we can all probably help and b) if you find it's spinning your head into a dark place that's totally normal. I was an emotional mess when I first posted here, with pretty much the same question, back in 2018.

On the valve, there's no 'right' answer I'm afraid; there's genuine pros and cons to each. With mechanical it's one op and you're done for life. However you'll also have to take Warfarin for life, which brings with it a risk of bleeds, means regular blood tests (though these can often be done at home), possible adjustments to diet and some people find the ticking sound a pain (though others find it reassuring).

With tissue, there's none of that. However, they don't last forever and so you accept you may need a second replacement op at some point. A conventional tissue valve should last 10-15 years but there are new ones (the Edwards Inspiris Resilia) which now last 20-25 years (maybe 30). Some, such as the Resilia in some cases, may also be able to be replaced by less invasive keyhole TAVI surgery rather than open heart when it comes to it, but it's not a given.

Generally surgeons suggest mechanical for younger people so as to avoid multiple ops and give older patients the option, if their condition allows. I was 50 when I had my AVR and had assumed I would be mechanical, though I wasn't particularly taken with taking Warfarin. In the event, to my surprise, I was given the option and went for the Inspiris, and am very happy with the result so far. Though those who go mechanical swear by that too.

Of course it does mean I'm likely to be looking at a second op in my 70s, but my take is who knows how things will have advanced by then anyway, especially with procedures like the TAVI which currently only tend to be used sparingly in the NHS. But we'll see I guess!

It's definitely one to think about hard, discuss with family or partner and talk through with the surgeon (and my tip would be to write down your questions in advance). As I say, there's no correct answer; it's a very personal thing. Which also means whatever choice you do make will by definition be the right one!

I hope that helps at least a bit. Good luck again. Keep asking questions if you need. And do keep us all posted how you're doing as it's what we're all here for.

Cheers Nic x

[presely in reply to Nic25]

Hi , thank you for your reply, some use full information for me to look into, my surgeon has given me a choice of tissue or mechanical valve, and said it was up to me to chose. As a very active 61 year old my surgeon told a tissue valve would only last 5 to 6 years which suprised me, so a lot to think about. Wish you well Presely

[Nic25 in reply to presely]

Really? I'm surprised too by that to be honest (and hope he/she isn't right!). As I say, my surgeon, his registrar and my cardiologist have all said mine should last 20-25 years, so very different.

I'm also at the moment on 18-month cycles between seeing the cardiologist (a massive improvement on the every six months pre-op) which you'd have thought wouldn't happen if they felt it was going to fail in such a short time?

Obviously I'm not a surgeon and don't know anything about your specific circumstances, so sure they're the expert but that does seem quite short, unless you're doing triathlons or something? If that is the case for you then clearly mechanical may be a better bet from the sound of it! But certainly one to be having a good discussion about with your surgeon if you can at the very least. Good luck with it either way! Cheers Nic x

[presely in reply to Nic25]

I need to ask the question about the Inspiris Resilia valve, also done some research sounds a better choice probably not available in Wales. Thanks

[Nic25 in reply to presely]

Definitely worth asking the question as I believe it is becoming a more commonplace option, even if it is a more expensive one for the NHS than your regular valve. Good luck! Nic

[presely in reply to Nic25]

Hi Nic, just an update had a reply from surgeon by email, if i was to opt for a tissue valve he was planning to insert the Edwards Inspiris also warning this is a new valve with with no long term results. I think i will go for the Edwards valve as my work would not be suitable with mechanical and warfarin. And hopefully things will have moved on if ever i need a replacement. Regards Presley

[Nic25 in reply to presely]

Hey Presley. Glad to hear things are progressing and you're getting some clarity at least. Your surgeon is right in that it is a new product, and therefore there is an element of gambling to it, but personally - and I guess that's all I can go with, not being a doctor - I've been very happy with it so far. And the 'hopefully things will have moved on' argument was also one element of my thinking at the time. But good luck! Do you have a date/timeline yet for surgery, pandemic permitting? Take care and hope things continue to progress. Nic

[presely in reply to Nic25]

Yes, 4 to 6 months unless i start having symptoms, may be longer due to covid, anyway thankyou very much and take care Presley

[Samgeorge in reply to presely]

Hi Presley, at risk of sounding like a salesman which I can assure you I’m not, check out the Edwards Inspiris Resilia. A tissue valve with a special coating supposed to last 25 years and most can have another valve fitted into them at a later date via TAV if required. I had this fitted on January 4th this year, age 52. Early days but do far so good.

It’s a difficult decision and one only you can make for yourself. I found arming myself with as much background material as possible helped me.

Take care and good luck with your choice.

Sam

[presely in reply to Samgeorge]

Hi, thank you for your reply, after doing some research i think i will go for the Edwards inspiris valve. The hope is it will last 15 to 20 years at least, also my surgeon said he was planning to use this valve. Time will tell if this is the right choice, glad to hear that you are doing well. Best wishes Presley.

[andy110519]

I had less than a week to think about it and given I was only 49 at the time the surgeon recommended a mechanical valve which is what I've got.Being a more recent one I'm on a lower dose of warfarin so bleeds less of an issue. The regular blood checks are no bother but I only have a 5 minute walk to the doctors. It's only a prick in the finger with an instant reading.

The ticking can be annoying at times but mostly I don't notice it.

Although the op was not as bad as I expected I wouldn't want to go through it again, it wasn't something I had on my bucket list!

Good luck.

Andy

[TMeditation]

I had my aortic valve replaced last year, I was 67. My surgeon was insistent I had an Edwards Inspiris as they are expected to have the longest life of a tissue valve and he wanted me to have tissue. I must admit after my first consultation with him I didn’t really think about it much, he was quite decisive. I have read the other posts here and someone has brought up the question of cost being an issue if you go NHS. I had my operation under insurance and my surgeon intimated that would make the Edwards accessible to me, because of the cost. Now, when I mentioned this to my cardiologist he said he would expect a patient to be offered the best possible valve, regardless of cost. I would also think, even in the NHS replacing a valve every 20 years as opposed to every 8 years would be a more economical option anyway .

I don’t know what other ‘hearties’ views on this are or if it is an issue. We don’t get very political on this forum, we are just here to support one another but it is an interesting line of thought.

So, back to your question, go tissue if you can get the long life version (we’d all like the long life version of most things wouldn’t we 😄) and good luck for your operation and recovery.

Sue.

[TooLate4Daughter in reply to TMeditation]

Hi Sue,

As somebody who is not political but is concerned that somebody, some organisation should address the system issues that affect all of us, interested to see your 'interesting line of thought' as well as others' points in response to Presely's query. Haven't had much experience although it has been important experience through both for my wife who had a successful mitral valve repair 12 years ago, and now has had dilated cardiomyopathy. And of course my 29 year old daughter who didn't get her PEARS in time at Royal Brompton and died during emergency surgery at Bristol Royal Infirmary.

On valve type - Daughter and I did go through a discussion about valve type ahead of her emergency surgery during her last night with us. Surgeon discussed with her in a very positive way what valve was right for her but we heard for first time a point about warfarin and pregnancy that tilted it. That and number of posts above do suggest there is need for some authoritative source of advice on valve types for people rather than just the pot luck of which Consultant / Surgeon you get. Anybody know of anything? Yet again will look to BHF and again suggest to Presely to call them and see what they say.

On cost - We personally haven't seen (yet) cost on as an issue and overall from most of what I've seen on this forum cost is not indicated as a big issue in what care people get, what valve they are advised on. Private vs NHS is an issue for cost and speed of treatment but not cost itself? Indeed we had been thinking that the not insignificant cost of a PEARS sleeve that had already been made might have been a driver to get my daughter dealt with properly but still asking about that. There are failings and inconsistencies across the system and the variable responses by hospitals to covering non-COVID surgeries, and the overall approach of the NHS and Government to time critical operations has highlighted those. Would stand corrected if others feel differently and can share evidence but would ask that come as a private message to avoid misusing or clogging up Health Unlocked as a support forum.

Cheers.

Paul.

[TMeditation in reply to TooLate4Daughter]

Hi Paul,

My condolences for the loss of your daughter. One doesn’t expect our children to pre-decease us, no matter the circumstances.

I would agree entirely about some reference for big decisions like the selection of a replacement valve. These are major operations and on reflection I had very little guidance through my heart surgery experience. This is possibly why, when my surgeon was so emphatic about the tissue valve, I simply fell in with his advice. It happened to be the right choice for me, of course.

I also agree these are difficult topics to introduce on a forum like this one and I can see why you preferred to private message. I always tend to ‘throw my hat in first’ just so I don’t offend anyone or end up having my message deleted! However there do seem to be a number of very knowledgeable users on this forum and that can be very useful.

Going back to my own heart surgery experience - I was very impressed by the staff at the Royal Brompton that seemed to be a centre of excellence. However you are absolutely right that this Covid crisis has meant most of the consultants have been redeployed to assist and other, even life saving, operations have been sidelined.

I wish you and your wife well. If anything interesting comes up or you think I could assist in any way, do let me know.

Best wishes

Sue

[TooLate4Daughter in reply to TMeditation]

Hi Sue, Tx for reply and hear what you are saying, Royal Brompton is a centre of excellence for some in some ways. When was it last year you had your operation and was it actually actually at Royal Brompton or at Harefield? The two are of course linked with, as a contact at Harefield has said, they only able to do what they were able to do for heart patients during the earlier stages of the pandemic because Royal Brompton doing such a great job on serious COVID cases.

[TMeditation in reply to TooLate4Daughter]

Yes I was actually at the Royal Brompton in Kensington and Chelsea. I think some of the same surgeons work in both hospitals though. I didn’t realise that the Brompton, as the heart and lung centre, were so focused on Covid care. Best wishesSue

[TooLate4Daughter in reply to TMeditation]

When? Presumably after May which is when the article I was reading about Harefield went up to.

[TooLate4Daughter in reply to TooLate4Daughter]

... and when things were starting to get a little easier for them at Royal Brompton.

[TMeditation in reply to TooLate4Daughter]

I had my AVR IN March 2019.Best

Sue

[TooLate4Daughter in reply to TMeditation]

Ah! So just before COVID hit? Lucky you.

[Reuben52]

Hi Presley...

Don’t know if it’s an option available to you but one of my potential choices was the relatively new Ozaki procedure, which uses your own pericardium tissue to construct the new valve.

The advantages are no need for Warfarin and a “very low revisit rate”. (From data accumulated to date which will obviously build over time).

The decision is always your own, but my surgeon swung it for me by his view that this is an option more suitable for the “younger” end of the patient range. At 67, I think I was a little flattered by this!

AVR replacement and double bypass on 26/2/2020 and after a little initial hiccup with my left lung, and of course the dawn of the COVID 19 era, things are progressing very nicely.

Breathing exercises vital and building up walking distances are very important as others have pointed out, whatever you go for.

Best of luck whichever you choose. These guys are brilliant and know what they are doing.

[presely]

@Thanks everyone for all the advice much appreciated, feeling a little calmer today.

[Tessie28]

Hi. oh boy it is one horrible shock. I am 9 months post AVR and had the Edwards Inspiris valve on the NHS. An expensive option but it has the advantage of having room for a tavi in later life should you need it. Because it is still quite new they estimate a 20 year life but that is not yet proven. I am 61. Mechanical and you need to take warfrin. But many are happy with that.