Hi, I have to undergo aortic valve replacement.
Choice of biological or mechanical valve seems to be an issue. Would like to hear from anyone who had has this procedure and there experience if each type of valve. Jon.
Aortic valve replacement. : Hi, I have... - British Heart Fou...
Aortic valve replacement.
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Templar889
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Hi, welcome to the forum, I had Aortic valve replaced and bypass 4 years ago, I was 68 at the time I have a tissue valve went with what my surgeon recommended, there are plenty of us on the forum who have had valve replaced some have mechanical some have tissue, with mechanical you are on warfarin for the rest of your life and will have blood tests every few weeks.
Looking at your bio your young so maybe mechanical but I would have a conversation with your surgeon and ask his opinion.
Again welcome any questions over the op ask someone will be along to answer you.
Best wishes Pauline
I had AVR 2nd May this year. I didnt feel on top of the world so decision making was hopeless. Anyway, the choice initially is open heart surgery or TAVI.
I liked the idea of tavi, being fewer days in hospital and a much faster recovery. Tavi will be biological, no options. However, i had a team of doctors Available so i asked them.
They suggested biological open heart. I took their advice.
A big issue was the fact that tavi biological doesnt have a long proven record. I didnt ask why not mechanical open heart .
i have astrong heart, iam 73 years old.
They put in a inspira resilia, Size 26 which i believe is top notch.
I heard several times that theese valves cost over £20,000 But its not always the case. Mine was under £9,000. The relevance comes to the surface if you are NHS.
I am now fine. No adverse issues.
It was fascinating to have two consultants talking to me. If they arent sure, what chance do you or me have ?
I think your age comes in to this . I dont need one that will last for 25 years as i wont last that long.
Now the key bit:
After the op they confirmed That a tavi would have failed. Interesting. So all those tests, xrays or whatever, and the surgeons do not know what they will find until they have started the op. In fact they didnt know i had a congenital heart valve issue. Only two leaflets, most of us have three.
No one can have experience of both types of valve, unless one failed. Improvements are made all the time.
Colin
Hi Colin. Many thanks for the response.
I’m leaning towards a mechanical valve due to a bicuspid valve. My main concerns are around warfarin and the possibility of clotting and internal bleeding.
Hi Colin. After more thought and further advice I’m going to ask for a Resilia Biological valve based on longevity and wanting to continue with my current lifestyle. Open heart is all that’s been discussed so looks like that’s Shari my having. 😁
Hi Pauline, many thanks for the response. I’m leaning towards a mechanical valve but have concerns around the continued use of warfarin.
I suppose my preference is also based on probability of having to have another valve fitted due to life span of biological valves.
Talking to your surgeon will help your thought process, the new Resilia valve could be an option, though there isn’t a lot of data so far.
Talk through your thoughts about warfarin again with your surgeon, tell him your life style and if it would interfere with the drug.
Best wishes Pauline
Hi 080311. Not quite sure of the restrictions imposed by warfarin so will need to tease arch more.
Hi, bicuspid valve runs in the family and I am currently convalescing after my valve replacement 3 weeks ago.
My dad chose a mechanical valve in 1993 and it lasted him over 20 years (unrelated cause of death) but he had to go for weekly blood tests to find out his warfarin dose and be careful not to cause any imbalance e.g too much sherry in the trifle! To be fair it never made him feel ill just made his eyes go red! It was the weekly blood tests that steered me towards a tissue valve but recently through this forum I have found out that nowadays you can buy a unit to do the testing at home which sounds much more practical if you are working.
Anyway I opted for tissue and traditional open heart as success of minimally invasive can be dependent on individual anatomy, with the premise that if I need another in 15-20 years TAVI will have moved on.
Hope that helps and good luck.
Hi Jay. Very grateful for your reply.
I must admit the blood tests and precautions around warfarin are putting me off the mechanical valve.
What advice were you given on life span of biological valves? I’ve heard differing values from 15-20 years to as little as 5.
Jon.
Hi, I was told 15-20 generally but Edwards have tested Magna-ease at 25, albeit in vitro only. The Resilia valve is marketed at 25 years plus, however it is so new there aren’t any case studies supporting this so far as I am aware. Having said that it could be longer according to my surgeon- just too early to say. My understanding is that at your age if you went down the tissue route you would be a candidate for the Resilia on NHS. Loads of technical papers available online if you have the appetite for it.
Unfortunately there are so many variables with us humans- I ended up having to be on blood thinners despite tissue valve (Apixaban not warfarin though) at least in the short term and have seen on this forum reports of valves failing in a short time frame, however these are the exceptions and the production testing that takes place is so rigorous. Literally hundreds of Valve replacements happen across the country on a monthly basis both tissue and mechanical so whilst no surgery can be entirely risk free it’s so well established (and I had exactly the same procedure as my dad 27 years later!)
PS I only researched the two valves mentioned by my surgeon- yours may have other preferences.
Fantastic info. Will definitely read up on the Resilia valve. Many thanks for the reply. Much appreciated. Jon.
Hi, my husband had his AVR in January 2018. He was 57 at the time and opted for mechanical. For him, the chance of a tissue valve failing after just a couple of years like the chap in the bed next to him at the time and his anxiety about surgery meant a once-and-done approach of a mechanical valve was ideal. Warfarin hasn’t been a bother. Finger prick tests at ever longer intervals up to 8 weeks unless his INR has a wobble, which doesn’t happen often at all. He also bought his own testing machine and gets the finger prickers and test strips on prescription.
Lifestyle has changed due to his underlying condition, not so active but still motorcycling but not doing any off-road by himself, or anything severe. And no waterskiing just in case of a bad fall. But I’ve read of others going snow skiing.
Diet is the same as before, you don’t need to be restrictive or regimented, just be aware of vitamin K high and low foods and drinks and be sensible. Adjust the Warfarin dose to your diet not the other way round.
All in all, a mechanical valve and Warfarin is working out well for my husband.
Best wishes to you and your loved ones.
Hi Shar. Many thanks for the response.
How does the warfarin affect his drinking?
Not a big drinker but I do like a pint!😁
I’ve been reading up on the testing machines and they sound a good idea.
No underlying conditions as far as I know, just the tricuspid valve being bicuspid.
Everyone’s different but for my husband, it seems to be balanced by having leafy green veg in his diet regularly too. He isn’t a big drinker either, just a pint or two of cider a few times a week. For some reason, cider suits him better then beer these days.
He also had a bicuspid valve, so his Dilated cardiomyopathy caused problems with stenosis and regurgitation of the valve sooner than might otherwise have happened.
My first AVR at 52 was a tissue valve, unfortunately I had to have it replaced seven years later. This time I went for a mechanical valve for two reasons, (a) I didn’t fancy the risk of having to have a third AVR and (b) I had to have a splenectomy a couple of years before the second op which puts me at high risk with infections. I am quite happy with my choice, some people have said the clicking noise is off-putting, but I only occasionally hear it and you soon get used to it.
I have a home testing machine but have to pay for my testing strips and lancets as my GP surgery don’t prescribe them, but that does vary from surgery to surgery as it depends on their budget allocation. I only test every eight weeks and have to attend the clinic twice a year to get my machine calibrated. I am lucky as my INR readings have been stable since I left hospital. You do need to be aware of what you eat and drink, particularly things with Vitamin K in them as it is the antidote to warfarin. The easiest way is to eat food with a similar amount of vit K in each day, so that you don’t get big variations. If I think I may have had too much, I just do a test to check. The anticoagulation clinic nurses are really helpful. I haven’t had any problems with bruising, bleeding etc.
Hope this helps and if you need any help regarding what to expect, things to do and not do etc, just ask, lots of us have been there and come out the other side.
Wendy
Hi, many thanks for the info. Feeling slightly daunted just now with all the differing info on both types of valves.
Heard of the Resilia biological valve that they say can last 20yrs. Will have to ask surgeon about it as not sure if criteria for NHS otherwise I’m leaning more towards mechanical as I don’t fancy having to go through this again in 5yrs.
My surgeon mentioned a pacemaker which surprised me as it has never been mentioned before??
Hi Templar
I had open heart surgery in 2014 to have a couple of valves fixed, and the operation went well. I have been on warfarin ever since. I pop in for a regular check every couple of months and that is it. My main problem is remembering to take the pills..
Many thanks for the info. Slightly bewildering just now but feeling better knowing others like yourself have been there and are fine
I'm 9 weeks post op Pulmonary valve replacement. Bit less common, and surgeon told me there wasn't a choice in valve. Had to be tissue. Down side is the valve lifespan anywhere between 5-20 years but next time shouldn't be full open heart surgery. Plus side is only another month on Warfarin, as I'm already demented with regular trips for blood INR. 😳
I had a mechanical aortic valve replacement in 2005 at age 48 did not want to face going through another operation in approximately ten years when as I was told the tissue valve would need replacing I have never regretted it as for Warfarin I have had absolutely no issues get your self a home tester.
Hi there, had a mechanical valve fitted December 2018 aged 39, I wasn't really given a choice because of my age. Anyhow I'm happy with the mechanical valve, yes you do hear the click but get used to it, yes you take warfarin for the rest of your life but once its stable then the blood tests are every 6 weeks, yes you have to watch your alcohol intake( and I used to love a drink) but I don't bother really now and it doesn't bother me, its healthier! To be honest because of my age the mechanical valve was the best option, I certainly don't fancy having to go through the op again, I'm not stupid to think I will never have to ho through it again but the likelihood is if I take care of myself and lucky enough then the valve should last me the rest of my life.
Hi Steve, when you say you can hear it how loud is it?
I really struggle sleeping with any noise!🤣🤣
Its just like a ticking watch but I don't hear it most of thr time now, you get used to it. In fact sometimes it is nice when you do hear it means you're alive!🤣😀😀
God! The mrs would go mad with at the side of her!🤣🤣🤣
My wife doesn't hear it at all anymore
My wife doesn't hear it anymore either. I hear it from time to time, but mostly not.
Hi, i have a mechanical aortic valve, there is a sound to get used to, that takes a while .However warfarin inr levels is a real issue for me,high then crashes to really low ,which for me is more of a problem for feeling rubbish,and i have to self inject. I wouldn't worry about having the odd drink, things like antibiotics or new medication can effect it.Im not totally sure i would have one again. But i didn't want to have it done again im in my early 50 's . At least my inr levels are being checked regularly Good luck With your decision.
Hi, thanks for the info.
Sounds like some things can be more tricky than others. Many varying experiences out there. Oh for a long lasting biological valve!🤣
I have a pigs valve, efficient and quiet. I have heard of people experiencing noise, clicks etc with mechanical.
I’ve got a pigs valve which is tissue it won’t make a noise I had done three years ago was told it would last 20 years . My surgeon said by that time it technology would have moved on and be easier to replace
Hi Jon
I had mine replaced in 2015,
I chose the mechanical type,
Due to my age , (58) at the time ,
My consultant advised me to get the mechanical valve,
As she said, ,
"you dont want to go through this operation twice!"
Shes not wrong ,,lol
Being on Warfarin isnt the pain I thought it was going to be,
I still get out for a few beers,
And apart from when I'm in bed ,and its quiet ,i can hear it click ,,
I had the new carbon , on -X valve fitted,
So I only need 5 mg of warfarin daily ,
I'm pleased with my choice ,
and I'd recommend it to anyone who asks,
Anyway good luck,
Keep us informed.
Hi Jon - as Pauline and others have said, you will find so much support here and from those who have had both type of valves. I also have a bicuspid aortic valve and have recently been told that it has got to the stage where it will need to be replaced. (I am 61). It is a shock when you first get the diagnosis- well it was for me as I feel reasonably well and am fairly active too. I haven’t yet had the discussion with my surgeon about what type of valve but I believe there is a newish one - cannot quite remember the name something like an “Edwards inspirila “ (sp) which has very good longevity.
Good luck and keep us posted.
Sarah
Im 5 weeks out from my valve being replaced for Bicuspid reasons, 48 and they were leaning towards a mechanical, my preference was the Tissue valve. Did my research and made my own decisions based on my lifestyle and research. When we made the decisions with the surgeon he supported my choice for the tissue given the research I had done and my reasons. He did point out that if the Edwards valve did fail that by then they would have data on Tavi and that this would slip right into the Edwards with no more open heart surgery. I'm 48 so the tissue valve at my age was not their first choice but they noted that research was showing tissue valves are lasting longer as techniques improve in manufacturing.
At the end of the day you gotta be comfortable with your decision. No one else can live with it.
One stat that swayed me was a failures in mechanical valves tend to be severe and require immediate intervention, tissues valve tend to fail over time or at least give you more notice before intervention is required. That with life without Warfarin were two main reasons for me as my father had issues with Warfarin and so far for me its taken about 5 weeks to get it stable so I'm looking forward to dropping off Warfarin in a few weeks and switching over to Xeralto or Aspirin.
Hi. Thanks for the info. Your thoughts reflect mine with regards to lifestyle and reliance on warfarin.
Bi cusped valve replaced by Edwards bioprosthetic valve 2 years ago at 67. So part man ,part cow! I didn't relish the warfarin regime and wanted to maintain my active lifestyle without a more rigid attitude to risk.
So it was fit and forget- until the valve begins to fail. So 5,10,15 or over 20 years, who knows?
In the meantime, life is good.
How are you feeling now after the op?
I run quite a lot and am hoping I can get back to it after the procedure. At present have to be careful as symptoms come on if I exert myself. 😒
Hi,
I too had a mechanical valve fitted due to my age (50), I just didn't fancy going through it again! Warfarin dependency sounds a lot worse than it is. Unless you like to eat a lot of green leafy vegetables, binge drink or consume vast amounts of cranberries that may be an issue. I was up and down for the first few months, which was a bit stressful, but I have now been in range for over 6 months( touch wood). I do home testing and it is so easy. I have an app that reminds me about all my tablets so I don't forget too.
Hi
Welcome to this great place!
Had an AVR Oct 2015 with pre-emptive double bypass.
Have an onx mechanical titanium valve!
Better than a bovine one as this is in me for life
Op and recovery not pleasant but just great being alive.
Was in Thailand 4 months after the Op!
Mech valve means no future replacement and worry over scar tissue
Warfarin is also not a problem especially now it is a finger prick test and not a blood file extraction
Happy to discuss physio and recover process
NHS has been great and I have no fear recommending a mech valve.
All the best
Alastair
Hello,
I had a valve replacement in June this year. I’m 56 and took the surgeons advice to go for a mechanical valve. I also didn’t want to go through open heart surgery again if I can help it so I was happy with my choice.
All going well post op, and my recovery has been pretty easy. The warfarin is not an issue, maybe I’ve just been lucky but my INR has always been in the zone from the off and I’m now on a 6 week check.
Good luck with your op, all the best
Annette
Hi
I had my mitral valve replacement done 4 years ago so not sure if my experience is relevant. I went with a mechanical replacement because I could not face another op - although I had endocarditis which meant I was in hospital for a month after the op 5 days is the average I think. Two things as others have mentioned. 1. The clicking is only noticeable if I am really quiet ie in bed - my wife says the noise is reassuring! 2. Warfarin - I am really sensitive to small changes in dose so I usually have weekly blood tests with manual dosing - ie the practice nurse and I decide. This was tricky in lockdown because my wife was shielding this meant blood tests in the health centre car park. It is a bit of a pain but I find it reassuring to see health professionals regularly- like a bridge into the NHS. I have thought about getting a home machine but the last time I looked they weren’t available for months because of Covid - you might want to check availability.
Hope this helps and good luck.
Nick
Hi Nick. There does seem to be some machines available all be it not cheap.
I am going to have to do some more research before I decide on the type of valve to valve fitted. Many thanks for your response. Jon.
Roche diagnostic are the company that do the home testing machine. It's about £300. You don't pay any VAT.
Hiya, Templar889, welcome to the forum and I just want to say thank-you for starting this exceptionally interesting and informative discussion. One day I will likely need an AVR and reading all the responses here has been 'food for thought'. Thank-you again, and please keep us updated on how you go on.
Did have a brief talk around warfarin with him. As I understand it, it increases the potential risk of internal bleeding. I don’t fancy the restriction this may place on me given my lifestyle. I appreciate the lack of data on the Resilia valve but if I could get 10-15 years out of one hopefully any further procedure may not entail open heart surgery. 🤞🤞
As I said I have tissue Pigs to be precise, surgeon said should get between 7-15 years, I was 68 at the time so if I am being optimistic will hopefully get to 80, he was saying that the rate of things being brought forward on valves by the time I need mine replacing there will more options 😊 so went with what he thought was best for me. Resilia valve wasn’t out when I had my surgery, maybe I would have looked at that, wouldn’t feel guilty having a pork chop😂 What ever you choose you will have a mended heart and be good to go.
Best wishes Pauline
Hey Jon. First off good luck! Getting told you need an AVR is never a nice moment. I had mine Dec 2018 at age 50, and went tissue, and, like many have said here, went for the Inspiris Resilia. I'm well - better and fitter than I was before in fact (although a still relatively sedentary fiftysomething) - so for me it's been a great choice. I'd assumed at my age that I'd have no option but to go mechanical, which I wasn't hugely keen on but had accepted, and so was pleasantly surprised to be given the option.
My reasoning on going tissue was, yes, it meant I had to accept I'd need to have another op at some point but getting even 10-15 years (and the Inspiris is supposed to last 20-25) Warfarin-free would be good, and who knows how the technology and medical practice will have developed by then? So it is a gamble but, I hope, a good one. My surgeon also pointed out that, while of course the hope is you won't ever need another operation if you go mechanical, that can never be absolutely guaranteed anyway.
For the op itself, for me it was very smooth. It wasn't of course pleasant but I was in and out and back home (sore and tired and a bit teary) in a week and then it was just a question of healing and rebuilding your strength. I'm due back at the cardiologist in November for the first time since the eight-week check which, after being down to six-monthly check-ups pre-op, has been a revelation. The only drug I need to take is 75mg of dispersible aspirin (although I am also on a low dose of candesarten for BP, but that isn't actually related to the valve) and I have no worries about foods or iron levels or bleeds or anything like that. But, don't get me wrong, many who go mechanical do swear by it.
Whatever valve you go for, and it is a personal choice with pros and cons for each, the main thing to recognise is that while, of course, this op is a massive deal for us, for the surgical teams these days it is a very standard, straightforward, almost bread and butter, procedure. As one doctor pointed out to me in the hospital, they like it because, unlike some operations, nothing is moving and it's just a case of taking it out and putting it back in! It is a big operation, no doubt about that, and I was lucky to have no complications to speak of, but I hope that helps. I'm sure you'll be in good hands.
One final thing. I noticed some people mentioning here about TAVI. Things may have changed since 2018 but for me at the time, in my hospital (St Thomas') it was made clear TAVI was mostly only used for people who were physically not up for open-heart surgery (and therefore at much higher general risk too). But obviously something to discuss with your surgeon/cardiologist if it is an option.
I know you've already had lots of great advice here already but if you do have any specific questions, very happy to try and help, either about the op itself or the run-up or the whole valve choice process, which I agree does do your head in when you first find out it's being left down to you!
Once again, very best of luck. For me the whole emotional turmoil and terror in the run-up was almost worse than the actual operation, so you have my sympathies. And do use us hearties for any help we can all offer.
Nic x
Hi Nic, your scenario is the one I would like to go for. Were there any issues around getting the Resilia valve? it was it just offered to you? Jon.
Thanks Jon, for a moment I thought you meant the actual op and I was going to reply, "no idea, I was asleep!" but I see what you mean. For me, in short no. My surgeon at St Thomas' suggested it (although it had been flagged up on here as an option when I asked exactly the same question as you have) so I also raised it. His words were something like "I go for the most expensive valve I'm allowed" or something like that!
But yes you're right, it's not cheap and I have heard of some NHS hospitals where people have said their surgeons were reluctant or had to be pushed, or they even had to refer themselves to a different hospital. That's also, by the way, something you can do. It wasn't an issue for me as my cardiologist was at St Thomas' and so I was just referred to the surgical team and, as it's one of the leading centres in the country for this stuff, I was very happy with that. But you can now ask to be referred to a specific hospital/surgeon if you so wish, though I have no idea how that actually works.
I've also heard of people going private who've had issues with insurers not wanting to stump up for it. But certainly all I can say is that at St Thomas' at the time it was available on the NHS. But definitely have a discussion with your surgeon if you can about that.
Just to clarify, too, as some people I see here have said the Resilia's lifespan is 15-20 years. I was told by the surgeon, the cardiologist and the specialist registrar who did my six-week check that it is expected/hoped to last 20-25 years. But we'll see I guess! And, yes, because it is so new there is (or was at the time) a lack of clinical data on that longevity, for obvious reasons, but again I was happy to take that punt.
If it also helps, apparently the reason it is so long-lasting is that its leaves/flaps are coated with a special anti-calcificant that means it calcifies much more slowly and so will need replacing less quickly. One other thing, my surgeon did discuss the possibility of me having the TAVI procedure when the time does come round for replacement. But that apparently does depend on what size of valve gets used (as they have different sizes as everyone's valve is different) and I think (though it was soon afterwards so I am a bit hazy about it) they said mine will be too small for that - boo! But of course things might have changed by the time we get to that point, hopefully in a couple of decades.
Hope that all helps. Cheers Nic x
It helps massively mate. Will definitely be speaking to my surgeon about the Resilia. Hopefully I can have one!😁😁
Hi,I’m Chris I’m 50 this year ,I had avr 7 years ago in December with mechanical valve,the warfarin can be a pain in the arse to keep it level,I go and get checked once every 4 weeks ,but if it drops or goes to high I’m back at docs sooner,it’s not impacted my life,still have a drink etc
Hi
My husband had aortic valve replacement nearly 18 months ago now. He was 56 at the time turning 57 while in hospital days after the op! The surgeon very briefly mentioned that there was such a thing as a tissue valve but never really made it sound like a viable choice and my husband and I did not really realise that we should have explored both options. So my husband now has a mechanical valve and is on warfarin. My husband still finds the noise of the valve a problem and describes it as not just a quiet click but a thumping sensation that still troubles him. His INR levels fluctuate and he usually has to have a test every two weeks. Very occ asionally he can go three weeks between INR tests and other times he has to go once a week or even after three days. We are vegetarian so probably eat more greens than most but he is consistent in his diet and for example does not eat spinach or broccoli at all anymore so that we can rule that out as causing problems with INR levels. As my husband was fortunate to feel completely fit before the op he has found it hard to come to terms with having to cope with the thumping sound and sensation since the op. He is fortunate that he is physically in good health but finds the thumping sensation unsettling and is constantly aware of it. He describes it like sound of flicking a drum. I can hear the thumping noise at times and it is true that it thumps louder at times but he does not know why sometimes it would sound louder. He says that when he is walking it troubles him least so he does spend a lot of time walking which he enjoys and of course is good for fitness!
I'm sorry that I am not more upbeat but this is an honest account of how things are with him. It could be that he is just very sensitive or it could be that 18 months still is not long enough for him to get used to his mechanical valve. Of course we are aware that of course he is extremely fortunate to have recovered well from his operation and to enjoy physical fitness.
It is of course a difficult and personal decision to make. I think in retrospect that even if we had considered both valves in depth we would at the time have both agreed to opt for the mechanical valve because of its longevity and also the not knowing of how troublesome the sensation and noise of a mechancial valve would be. I think he is probably in the minority experiencing problems with the sensation/noise of the valve. The majority of people seem to either not notice it or describe it as a quiet click.
Sorry this reply is so long but I wanted to try and get all points across as it is of course a huge decision. Iurge you to discuss in as much detail as you can with your surgeon and hope you come to a decision that you feel happy with. I sincerely hope all goes well for you.
Hi HenninLob, sort to bear your husband is having the issues you describe with his mechanical valve.
I’ve only had a brief discussion with my surgeon so far but have already mentioned My preference for a biological valve due to lifestyle.
I suppose I’m banking on getting around 10-15 years out of one and then not having to have open heart surgery f ok r a repeat op. The noise would be an issue for me as I seem to zone in on any noise especially when trying to go to sleep. The Resilia valve seems to be best option but will have to see if that’s an option on NHS. I really hope your husband settles down with his mechanical valve. As you say, health and physical fitness are so important.
Thank you so much fir your honesty I really appreciate it. Jon.
It's great that you are giving proper consideration to which valve you should go for though I can imagine that it's also true that the more info you gather the harder the decision is. People all have different opinions and experiences. Also looking back on the weeks immediately after the op and following on from Nic's comment it is true that it takes a while to mentally process what has happened to you. I remember the nurses (who in Bristol were all wonderful beyond belief) reminding my husband that Open Heart Surgery is of course a major operation and of course it will take time to fully recover. Like Nic my husband had a level of anxiety about the new thing inside him and like Nic mentioned he was constantly checking of pulse/heart rate. Despite what Doctor's said he could not believe that things going on his body were right and was convinced the valve was going to pack up and could not take the strain of the job it had to do! Eighteen months on he does still struggle with the feeling of the valve in him but he is otherwise fit and healthy and like I mentioned I do think he is probably in the minority with the way the intensity of thumping of the valve bothers him. I notice on this forum that not many mention that they find the thumping of the valve a nuisance and most refer to it as a ticking and even say they find it comforting! I do hope you get good support from your surgeon to make the right choice regarding which valve and that you can have the valve you choose. It sounds as if you feel you know that you will decide upon a tissue valve so it sounds as if you are making good headway. I hope all goes as smoothly as possible.
Hello. I have a biological Edward's Konect Resilia conduit with aortic valve. I am 58 years old. Very active healthy fit cardiac strong life . My condition required replacement of short piece of aorta and root in addition to the valve. This was done on March 31 of 2021. I'm replying only in regards to the thumping issue, as the decision making information on tissue vs. mechanical is quite thorough here already. My thumping has progressed steadily over time in the nearly 4 months since my surgery and more so since weaning off post op meds. It's a bothersome thumping, present nearly always but very much so could be described as comes and goes. It's positional, worse when I inhale and after meals, and in the morning. The sensation could best be described as not a heart beat of two lub dubs, but one strong thump every couple seconds. It can wake me in the middle of the night and greets me rudely every morning I awake. It's not even close to a click, it's a thump/percussion that's felt, and heard, from sternum up to and between my ears. I have just recently returned from my surgeons routine 3 month post op appt, had follow up contrast crt imaging done, and had one discussion with my cardiologist. The imaging I'm told was ideal, the bass drum I'm hearing and feeling seems to be very much disregarded by my surgeon and cardiologist to this point. I have a very strong healthy heart and am told it's just a phenomenon of having a strong heart and not being used to a stronger pulse since I unknowingly lived with regurgitation thru the valve for a long time. ???....anyway its something all valve candidates should ask their team because I was not informed of this phenomenon being a possibility pre op, and my team and surgery was performed a Cleveland Clinic Aortic Valve facility in the United States. I knew about the click from mechanicals but never expected this nearly constant thump I now have from my biological. It's quality of life altering at this early stage. I'm grateful my aortic condition was found and my surgery was successful even tolerable in the replacement. My heart was in a degrading situation prior. However my day to day life is now below what it was pre op due to the thumping. Im told ill get used to it, it will go away, even given examples of poorer souls needing medication to tolerate mechanical clicking, all these to appease me..So in closing I realize im very early on and am only just now reaching out in an effort to find more information on this, hoping it's something I'm doing or not doing, causing it.. And i can make it go away myself.. This is the first site I've participated in and I will be reaching out for 2nd or 3rd opinions from other cardiologists as well as carrying on my search for any helpful information on biological aortic valve replacement thumping. I pray your husband's condition lessens somehow. I know how hard it is to experience every single waking moment. I'd take a dripping faucet any day. Thank you for allowing me to share.
HelloI am truly sorry to hear of the intense thumping you are experiencing and it must be all the more of a hideous experience as you should not expect this I understand from a biological vale. Although I myself have not had heart surgery living with my husband who finds the thumping so hard to deal with gives me I feel an insight into what you are having to go through. I think when the cardiologist reviews a patient where the operation in itself is a success they perhaps can not relate to how the thumping can seriously effect quality of life. You are still in the early stages post op and I have heard that people do get used to it and it may take up to two years. I have also heard that it can take a very long time for the tissue to all heal and when it does that can mute the sound. I am not a medical professional but these are things to cling on to to hope for improvement in the future for you! I really hope that the thumping will ease over time and you will somehow get used to the new invasion in yourself and that you can find strategies to help cope at least some of the time. I know my husband finds walking helps so he does a lot of walking which in itself is good for wellbeing! My husband experiences many of the same exact symptoms that you have such as the thump feeling more intense when inhaling and particularly so on waking. We are grateful for you taking the time to describe your symptoms as it does help to hear someone else describe them as so closely the same though of course we wish you did not experience these symptoms at all. My husband did have a few CBT (cognitive behavioural therapy) sessions. These sessions did help somewhat in helping him analyse why he felt troubled by the thumping so that he could try to find ways to accept it and not see it as a burden. He has good days and bad days so I do hope that in time you may experience many more good days. I note you say that you have a "strong healthy heart" and I suppose you and my husband have to try to remember what a positive thing that is though of course you would both rather have a strong healthy heart that did not thump. Once again thank you for taking the time to share you experience.
he probably knows this all too well by now but my only weapon ive found against it is to shallow breathe. When i breath very shallow breathes it goes away commensurate with the level im breathing. Even disappears completely if shallow enough and in correct position ( Not flat on the back though) Any increase in the depth of the inhale intensifies the thump. When attempting to sleep, besides the well known right vs left side, i find some minimal success by keeping my arms from folding under the pillow. In regards to walking that works for me thru distraction as i can still feel its occuring its just not as unnerving. Actually exertion activities is what keeps me somewhat clear headed throuout the day despite the pulsing being more intense then. it doesnt bother me as much if im strongly performing physically any task though its still occuring..
Hi there, I had my avr in Feb this year. I'm 42. Right up to the date of the op I was leading towards a tissue valve. In particular the inspiris resilia which should last longer due to anti calcification treatment it has. But 3 surgeons, 2 cardiologists and several gps advised me on the mechanical on-x valve. Carbon fiber number needs less warfarin than previous version. Also because of my age I could be looking at potentially up to 5 surgeries. To be honest I do not want to go through that surgery again and I do not want to put my family through the worry again. My inr bounces all over the place as I'm being treated for gout of all things and I don't mind a 5 min trip to the docs for finger prick tests. Most people of not on conflicting medication get settled very quickly on warfarin. I'm also very active and it isn't hampering my pastimes. What ever decision you make will be correct for you. Take care and all the best.
Mike
Hi Mike. Thanks for the heads up. My understanding of the Resilia is that it has greater longevity (15-20yrs), on that basis I would be hoping any repeat procedures would not be so invasive.
However, I will talk through it with the surgeon when the time comes. Don’t fancy repeat surgeries so am leaving all options open until last minuet!😁
Jon.
Yup that's my understanding as well although not proven unfortunately 😕 on that basis it could last anywhere between 5 and 30 years depending on calcification and whether you wear it out if you are young and fit and put it through it's paces. Good luck mate and let us know how everything goes. A little post op advice is to wait till you are completely off your pain meds before you lift more than half a kettle of water. That includes paracetamol. From someone who didn't listen to that advice and wish they had.
Cheers Mike
Will do mate. All info is appreciated. Jon.
Nic, does the breathlessness and chest go when the new valve is fitted? I run quite a lot but obviously am unable to now. Am hoping I can get back to it once I’ve had the surgery. Jon.
For me Jon I had had aortic stenosis for decades and, to be honest, didn't feel I had any symptoms whatsoever; I wasn't having to pull up or rest when I did stuff and didn't feel it was stopping me doing anything, within the limits set by my cardiologist (no team sports, heavy lifting etc).
Having said, I was pretty sedentary and most of the time my exercise was just a brisk 40-min walk at lunchtime. So it was possible I was being self-limiting. It was only when I was in the (four month) countdown to the op that I had a few periods (like coming up a long slope against the tide at rush hour at Bank Station in London) where I felt a bit ropey and more out of breath than I really ought to have been. But by that point it could easily have been psychosomatic terror too.
However.... once I'd had the op, in fact while I was still in the hospital, the change I felt was miraculous. It felt like my whole chest had been opened up (and obviously in another way it had been!). It was sort of a "oh so this is how everyone else feels" moment. So clearly I had had symptoms for many years but because they creep up on you so gradually just hadn't really noticed, or just put it down to the fact I was a fiftysomething guy who sat on my backside at a computer most days.
Obviously it'll take time and you'll need to build back up gradually - and if you get the chance I found my local cardiac rehabilitation programme helpful, though I'm not sure if they're still running these days because of Covid - but yes, post-op you should be able to get back to normal.
I'm now probably doing more exercise than I was pre-op (though still not enough) - but, again obviously, take the guidance of your cardiologist etc on what you can or can't do. I was never much for running (dodgy knees) but now do half an hour each morning on the exercise bike, still walk 40 mins each, garden etc. Did used to go swimming regularly too, but Covid has now kind of put paid to that.
So, while finding out you need to be cut open and have your heart stopped doesn't put you in a great place mentally (at least it didn't me), the outcome can be positive and I'm certainly glad it happened. And hope it will be for you too.
Cheers Nic x
Hi Nic. Very similar to me. No symptoms at all until mid March then seemed to come on all of a sudden. Stenosis since birth (tricuspid is bicuspid) with no affects. Played foot ball to a good standard and trained all my life. Must admit now I know I need the op my mind is t in a good place either. Retired from Fire Service last September after 30yrs and now work for NHS. Didn’t think I’d need this till I was about 70!🤣🤣
Hoping for same outcome as you mate so fingers crossed when time comes. 🤞
Hey Jon, just to add completely agree the mental side of this is massive. I was in a bad head space all through the run-up, absolutely terrified. But then of course (luckily) the reality wasn't nearly as bad as I had feared.
I also had a few mental turns during the recovery period, just really teary and emotional - I think from relief more than anything. The op had been hanging over me since my teens and so just getting my head round the fact it had actually happened and I was out the other side and, you know, I was OK.... that was something to deal with, albeit a positive thing,
Then for the next six months there was a level of anxiety about this new thing inside me and everything else, constantly checking of pulse/heart rate etc. But that has now pretty much passed (got rid of the fitbit!) and I'm just trying to get on with life (Covid restrictions permitting).
Especially for us men I think it's important to recognise this stuff - plus in fact emotional stuff can be a relatively common side effect of heart surgery anyway.
So do feel free to keep in touch - DM me if you like if you want to take things off line. Especially if you feel you just need to ask stuff or vent or whatever - practical stuff, fears, 'stupid' stuff (which normally isn't). Obviously I'm not a medical pro or anything but very happy to help if I can.
Good luck with everything again.
Nic x
Many thanks Nic. I had to go on a 3 day course for work with a written assessment 2 days after being told I needed the op. Wasn’t really in the mood to say the least!!
Not quite sure how I feel right now.
Still concentrating on type of valve to have. No doubt my fears will increase the nearer I get to it.
Very glad to have your experience to go on. Will keep in touch. Jon.
Hi I had mechanical aortic valve replaced when I was 57 with a cardiac bypass ,
I wish I had the bio as I had terrible problems with my Warfrain it swings all the time despite being so careful what I eat , I’m Guess I’m just the unlucky one ,
I had a bleed in my knee joint frim the Warfrain . Surgeon are very cautious when operating with some one on warfarin which you have to be if you have mechanical ,
The Potential surgery In the future I think could be a real problem . Say I need a hip or knee replacement in 10 years time !!! Would they do it ?
Just things to think about
I was watch wait for ten year then it got worse was down for plan valve but it really got worse to the point dizzy standing up frim chair ache left side neck and I had black out moving too quickly . Don’t do what I did and phoned 111 i black out fainted Told by consultant I should phone 999 my consultant Really told me off . Also said tell the ambulance not to give the under the tongue spray .
I ended up in bed rest in corgi all care before blue light to Southampton.
Hi Kimstyles. Sorry to hear of your issues with warfarin. To be honest they are my main concerns with a mech valve. As you rightly say, the possibility of surgery when older increases and so will the risk. I sincerely hope it settles down for you. Jon.
Hi all. Have my lung function test tomorrow so I suppose I’m the road to surgery now. When I spoke to my surgeon he mentioned possibility of having a pacemaker fitted after surgery. This is not something I expected. Has anyone else had one fitted and if so why? Any info would be much appreciated.
Hey Jon. It can be a common side-effect - to help with the heart restarting - but is often (hopefully) temporary. You are also hooked up via pacing wires to a box designed to help with any erratic heart rhythms (and atrial fibrillation is another common side-effect but again is often only temporary as the heart sorts itself out again). I again was lucky in that I had my box taken away within a day, but others did have them for a few days before things stabilised.
I had one 'flutter' episode once home, but fortunately went to the GP (who was very excited to get a chance to use the practice ECG machine) and the underlying heart beat was fine. But arrhythmia and AF can be issues if often normally, as I say, just short term.
But if you get a chance one to discuss with the team tomorrow perhaps - and good luck with the test! Hope it goes well for you.
Nic x
Hi, One of the risks they will raise as part of consent process is heart block. I asked why and was told that the aorta is very close to the area that controls the heart’s electrical systems and that’s why it’s a risk (1% from memory) I had to have a pacemaker for a few days post surgery and I believe they always add pacing wires during surgery as a precaution which can be later removed.
Hi Jay777, many thanks for the response. I was unsure why it was mentioned as I hadn’t had any issues in this area so far.
Cheers Nic. I was slightly put back when surgeon mentioned it as he didn’t put it in any context. Hopefully won’t need one fir to long🤞🤞if at all.
I was given these by Guy's & St Thomas' Jon, which may be helpful and answer some of your questions (though they are pre-Covid)....
guysandstthomas.nhs.uk/reso...
guysandstthomas.nhs.uk/reso...
Also, on a practical note, while I'm sure you'll get a lot of pre-op advice, one thing it may be valuable to be practising straightaway is standing up from sitting without using your arms. With the sternum wound, as well as not lifting anything heavier than a half-full kettle of water, you are told very sternly not to push up with your arms/shoulders, as it can strain the wound, as pull clothing over your head.
But hopefully that's all a time away yet.
Cheers
Nic x
Hopefully!🤣🤣
There’s more to this standing up without using your arms than you think! 🤣🤣
I found it helpful to always sit on the edge of the seating, it made standing up from the sofa or chair much easier. Also, when getting out of bed, I would roll over, scooch over to the edge of the bed and then more scooching up the headboard until I was very nearly sitting up. From there I was able to swing my legs off, plant my feet on the floor and push up/off from the edge of the bed.
Heart problems - NOT for the faint-hearted!
I can see 👀I’m going to have to practise. 🤣
Hi Henninglob. What I find confusing is the preference for a mechanical valve for younger patients. In my mind, I want a biological one and if that fails after ten years I’ll go for a mechanical one and put up with the warfarin as my lifestyle will be much less active then.
There may also be the possibility of valve in valve replacement by then. 🤞
Will keep researching.
I am to have my bicuspid aortic valve replaced, I have severe aortic stenosis. I am 64 and work full time, so fed up with being so tired and feeling unwell. Having my multi disciplinary team meeting on Monday. Have no idea which kind of opp or valve will be best for me. Minimal invasive sounds appealing to me but is it the best and safest option? I don’t know. As for the valve I am not sure. The above posts have been very encouraging.
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