Any advice. Mechanical v tissue

[mummywoo1978]

We have to make a decision of a mechanical or a tissue valve for a replacement for our 15 year old son. Any advice would be gratefully received. Thanks.

[MichaelJH Heart Star]

Hello and welcome to the forum! You have not said which valve so I will assume the aortic one. At his age I would go tissue to avoid the need for warfarin. He is at an age where he will probably be involved in sports like rugby and football, martial arts, cycling and maybe motorcycling (ex-biker here - anybody remember Lemsford Cafe). It will need replacing in 10, 15 or even 25 years but he will be old enough to make an informed choice and young enough for further surgery. Also over the next decades there are likely to be further advances. Give him my best wishes - it is a lot to cope with at that age!

[Dolphin14 in reply to MichaelJH]

Agree

[Maisie2014]

My aunts had a total of 4 tissue valves. The first three lasted 12 years and the fourth 15. She was then given a stainless steel one that lasted her a good 10 years. She was 82 when she died. She lead a long healthy life from the first one. I’m sure whatever decision you make will be fine. We can only do our best for our family. Take care.

[Nic25]

Hey mummywoo1978. I'm away (on a university visit with youngest daughter) so will try to reply more fully when I can.

But personally I went tissue and reckon I made a good choice (although only six months on so it's early days). I had assumed at age 50 I'd have no option but to go mechanical and so was pleasantly surprised to be given a choice. I went for the Edwards Inspiris which is a new generation valve with a special anti-calcification coating that - they say - means it could last 20/25 years. But as yet firm clinical data is scarce, for obvious reasons. My take was yes it's a gamble but who knows how valve tech and anticoagulants will advance in 10 let alone 20 years' time?

I also want to travel and didn't want to feel limited by Warfarin and regular blood tests (though people do obviously manage fine). So that was kind of the quid pro quo for accepting that by going tissue I know I will need another operation at some point.

So my only medication is dispersible aspirin daily and candesartan for BP (so even that's not directly valve related) which is all very manageable. So if (as it sounds) you get the option from your surgeon to choose I'd certainly suggest at least consider tissue.

Having said that there is no "right" answer to this, there are genuine pros and cons to each choice, so it's really just a question of "owning" and "what if"-ing whatever choice you do make, whatever transpires.

Hope that helps. As I say it is a very personal decision so whatever you/he chooses will be right! But hope this helps in explaining some of the thought process I went through. Good luck either way and with everything else that messes up your head and life with this process.

Nic x

[Nic25]

Sorry just read back and should be NOT what if-ing... slightly important omission! Nic x

[Jamse]

2004 i had an emergency aortic valve replacement ...i got a tissue one

i do not need to take blood thinners,,,its made of gristle and has no DNA

my friend has a mechanical one which makes a noise and he takes blood thinners every day .obviously im biased

[mummywoo1978]

Hi thanks for all your replies. yes it is an avr he will be having. The surgeon is hoping to do a ross procedure but not sure this will be possible due to an enlarged aorta. she asked us to think about an alternative as a plan b. Seems that a tissue one seems to be what everyone is suggesting would be the choice to make. do mechanical valves need changing as this is what he is most scared of. The whole process has had a massive emotional and mental effect on him and he is petrified. just keeping my fingers crossed that the surgery goes ahead next week as planned and he is not cancelled again as not sure how he will cope with that.

[Nic25 in reply to mummywoo1978]

In answer, technically no mummywoo1978 - the main selling point of a mechanical valve is that it should last for life, even from the young age your son is at whereas with tissue he will be looking at replacement at least once (hopefully multiple times with a long life!). However as my surgeon pointed out - and which was one of the arguments that swung it for me - you can never of course guarantee you/he won't need another operation at some point in the future. Hopefully it would be a one-time replacement but these things are never 100% certain.

And just to add for me the mental and emotional side - the terror basically - was a massive thing, almost as big as the physical side of the operation to be honest. So the turmoil and shock and terror you're all going through is very normal and don't beat yourself up about it. But I appreciate saying that won't change the situation! But good luck again, especially with the Ross procedure if that option happens. Nic x

[Becz123]

My husband is 38 and has just had to make a decision on a new aortic valve in case they couldn’t save his own. He was strongly advised to go mechanical as this reduces the need for frequent replacement as it has a longer life. Luckily for us they managed to repair his valve so neither was necessary. He has just had a replacement aorta and is doing great. There are pros and cons for both valves and age is often a big factor when it comes to the surgeons advise. I wish your son all the best with his operation whatever his decision.

[Rob1112222]

Im 31 (considered young in terms of heart surgery), with hopefully many years of life left in me. So we went with the metal valve. I'm glad i did after going through the surgery. I don't want to ever have to go through that again and the value should last over 50 years. I won't be able to do contact sports or martial arts but I can still go running, rock climbing, mountaineering, swimming, etc. I'd recommend taking the surgeons advice. They will have some good opinions. The initial recovery from the surgery is very hard but the support you'll get is amazing. I wish your son all the best. If you have any questions please feel free to get in touch. Best wishes Rob.

[SarahBrealey_BHF]

You can get more information about the different kinds of replacement valves and see how they work here: bhf.org.uk/informationsuppo...

[seasider18]

Ask his surgeon about the possibility of AF after the operation. I did all the research and that was the one thing that did not show up.

About a third of patients with tissue valves go into AF after the procedure. With some it rights itself after a few days others need drugs or a cardioversion as in my case to right it. The first cardioversion a few days after the operation did not work but a later one did. I twice later went into AF and had another successful cardioversion before going into permanent AF. In my case age may have a been a factor as I was 79 when my valve was replaced.

There are many papers on line about the AF.aortic valve connection.

[Daylilly in reply to seasider18]

Hi Seasider18 I hope you don't mind me asking you how you felt after your proceedure and how you are getting on now? My 81 year old Mother had aortic valve replacement some 8 weeks ago and thankfully although the operation was successful she is struggling. She's on beta blockers still but is so very tired, breathing is still difficult and she'snot sleeping well. All of this is making her feel rather low too. Thank you.

[seasider18 in reply to Daylilly]

I felt fine when I wakened up in ICU. My main concern was that the gas may have affected my memory as happened to my mother when she had a kidney removed at 82. I chatted away to the nurse to reassure myself and tried to refuse pain killers.

I was sitting up in a chair when my wife came to visit me the next afternoon, The next day was not so good when two Physios walked me down the corridor and up two flights of stairs and back. I was very breathless after that. I was then found to be in AF and had fluid on a lung that had to be very painfully drained and eventually got home on day ten.

Sleeping was difficult as I don't usually sleep on my back and I had a numbness that went from my left hip to the middle of my back that took months to go.

It was June and good weather and I was able to get out every day and did more than the suggested walking and sat out on the seafront. Because of the AF I was put on amiodarone and Bisoprolol that caused me quite a few side effects. By week eight or nine I felt well enough to go to the races every week and had no problems travelling by bus and train. Week twelve I had a cardioversion that put me back into sinus rhythm. End of story until a colonoscopy 15 months later put me back into AF by stimulating my vagus nerve. I have a yearly echo cardiogram to check that the valve is functioning all right.

[Ashleigh_BHF]

Hi mummywoo1978

What a tough decision you have to make as a family. The thing to remember is tissue valves have a lesser day to day impact on his life, but it will need replacing-and probably several times during his lifetime. There may be advancements in technology and surgery during that period, but it's difficult to predict what will be available in the future.

A metallic valve should last his whole life, but there is a risk of having a stroke so he will have to take warfarin. Warfarin has day to day impacts on his life-he won't be able to drink alcohol, or play contact sports, and will have to watch what he eats to check it doesn't interact with warfarin. As someone else earlier said, it can be a little trickier going away on holiday or travelling with warfarin.

Whatever you all decide together, take your time and don't be afraid to contact the surgeon or nurse specialist again to go over the options. It sounds like he could use some psychological support also if he doesn't currently access this, so speak to the specialists if you think it will help.

Best of luck, and please keep us updated.

Ashleigh

[Caitlyn6]

My dad had a metal aotic at the age of 60. He was on warfarin. He now has stomach cancer , not due to the warfarin but I think they said his stomach was quite inflamed. Any procedures he had, he had to come off the warfarin and have heparin injections. However, I know today there are alternatives to warfarin. I understood a metal one lasted longer but I may be wrong. Good luck.

[mummywoo1978]

UPDATE: Hi all. We have now been through surgery and he was discharged yesterday. Unfortunately the surgeon could not do the ross procedure as there was too much damage. So plan B came into play. We opted for the mechanical valve as this had the best outcome for my son. He has been given a new generation valve called an on-x. This means after three months his INR levels dont need to be as high and he can top up with an aspirin. He is doing well post surgery just losing a bit of weight but he hasnt yet got his appetite back yet and is still on diretics.

[MissP77 in reply to mummywoo1978]

Glad he is doing well!

[Dolphin14 in reply to mummywoo1978]

Great news. Glad everything went well. Thank you for the update.

Wishing your son a speedy recovery.