2 weeks ago I was diagnosed with a congenital aortic valve defect. I hadn’t really noticed any symptoms until very recently, and was misdiagnosed on several occasions too.
I have been admitted to hospital for a fairly immediate valve replacement. Here at hospital in the last week I’ve had 6 x visits from final year medical students to try and diagnose me as the consultants think it’s a brilliant case study as they have to work hard to identify my issue!
My angiogram and tests show that I am fit and healthy with no other underlying problems. Liver, kidneys and arteries are all good.
I am a healthy non-smoker who is very lucky in that my job allows me to entertain clients, and my wife and I have a great social life. We probably drink too much on occasion when with friends at dinner or mates at the pub perhaps 1 or 2 weekends at most every 2 months. I occasionally go to beer festivals and wine tastings as well. Unless entertaining, I never drink at home, and never do so during the week.
I am due to have a mechanical replacement and am told I will be on warfarin because I’m still fairly young. However I am only now learning that I am not to have more than a couple of drinks at a time, and there are very slight health risks with warfarin. But no ongoing medication requirements with a tissue replacement valve and no alcohol limitations either.
I know this will sound selfish and churlish considering I am blessed to be given a chance to correct a condition that many years ago would have had a terminal conclusion within a few years. However, I am now realising lifestyle impact on occasional social occasions & holidays while still quite a young man.
I am a realistic and honest person and want to understand - and it’s been hard to articulate this without sounding like Oliver Reed. But do people have the occasional night where they overdo it with a mechanical valve? Am I better having a tissue valve so I can enjoy these sporadic events, on the assumption that I’ll be doing much less in my mid to late 50s and could have a mechanical valve replacement by then?
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ZippyABC
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Welcome to the forum, I have a tissue valve I was 68 when it was done, went with what the surgeon recommended. That was 6 years ago. The life of a tissue valve is between 7-14 years. I had my 5 year review earlier this year and one of my numbers was down when they did the echocardiogram this was in line with a valve of that age. So will have another echo next June see how it’s going then. So I have a shelf life.
You are very young to have a tissue replacement, can understand you don’t want to change your life style but there are some things we have to change. When we have a heart issue there are things we have to change we have medication to take watch our diet and then doctors/cardiologist appointments to keep. Drinking on warfarin is a big no no, the same as contact sports. You could have a massive bleed!
Speak to your surgeon there are other valves now that are man made but you don’t need warfarin and have a longer life than tissue maybe 20 years.
So research what is out there always remember my surgeon saying a year is a long time in heart research things are changing all the time.
Hope you can find something that your happy with, because we are the lucky ones we have been given the opportunity of living a life.
Thank you Pauline - I genuinely appreciate the time you’ve taken to respond so carefully and with such thought. That’s very kind of you.
Yes, I think I will have a chat with someone. I’m grateful for my opportunity to still embrace my life, and have a lot ahead of me. But I feel as if I have been slightly pushed down a certain path automatically because of my age and haven’t really had the opportunity to consider what might be my preference considering my own lifestyle choices.
Welcome to the forum. Lots of decent helpful people lurk here and possibly the nicest most helpful of people has already replied. Pauline is a gem.
I had two very capable brilliant surgeons and they explained that valves were changing all the time but the surgeons want six years of precedent.
I was 73 and so it was a fair bet to go tissue because I will likely die before the tissue valve expires. Since then, tissue valves can now include a slot for a later TAVi. Also the shelf life is rising all the time. Rising a lot.
I would pay huge attention to what your surgeon wants to do. He will be fitting the thing, no one else, so his preference is highly significant.
In many ways, I was lucky because I had weeks to live and I was feeling very rough. I went for tissue and to have my life returned to me was wonderful.
It is a big operation and rehab is months.
Even with tissue, I need to restrict booze, eat a better diet, get good sleep and take gentle exercise. But one drink too many is tolerable. One steak is tolerable one nights bad sleep is retrievable.
But the overall equation is comply or die. It must be so hard for you, being told things could get worse whereas you do not actually suffer at the moment.(?)
Go with your gut feeling. It’s your life. You must be happy with your choice.
Really appreciate your response as well as Pauline’s thank you so much for taking the time to write.
Yes, I feel absolutely normal almost all of the time just a bit out of puff when trying to get more than a few steps in walking around the hospital. I know post op, that will be different!!!
The tissue option is not something I’d take lightly but talking to another doctor in passing this morning he was absolutely adamant that any more than 1 or 2 drinks is a big no no with a mechanical valve. This is making the mechanical option really less palatable. 20, 30, 40 years (!) of living a very quiet life doesn’t hold much appeal just yet and I really want to know what damage 1 nice night or day out would do to me. Which again is not to disregard or not appreciate the precious opportunity afforded - it’s about understanding what is the worse that can happen, and what options I truly have because I may be on warfarin.
How nice, hairdresser comes to you. My hairdresser lives in my road, so it is very convenient. Even though its a long road !
ZippyABC questions really did bring home the consequences of heart diseases. I have heard reports that tissue valves can now last many years. So I guess us less young people should be OK with our tissues. I was so lucky to have a very capable surgeon and He actually worked with a TAVi specialist so i was given both viewpoints. And they both spent considerable time at my bedside.
Best wishes Pauline
Sooty
Hi, Valve choice, it's a big decision and one that needs careful thought.
I'm in the position that I currently have Mech Aortic and Mitral Valves.
Yes, I'm on Warfarin, coming up nine years, and I still drink when socialising. Enough to keep me happy, but, I'm aware that I have constraints, so over the years have learnt what I can get away with, and I do.
Previous to the Mech valves, I had a Tissue AV, which lasted for the best part of 19 years, well beyond the typical valve, but, not unusual, before I had it replaced again in my early 50's. At the time I had planned for another Tissue, but, in the event went Mech, predominantly to avoid my family going through surgery again, although due to an infection, I had a 3rd Surgery in any case.
There is a fundamental difference between the two, I have no regrets either way, however, I do have a preference.
I realise you don't have much time, but, choose wisely, consider the future, how will surgical techniques progress and evolve. My first was in 1994, and they've moved on significantly in that time.
I had a mechanical aortic valve implant in 2005 at age 48 it was recommended at that age to avoid having to go through the entire process again when a tissue valve wore out. It has proved to be one of the best decisions I have ever made. As for drinking I drink when I want to and the amount I want to it has never been a problem . This is helped by having a home INR monitor to keep an i on levels and adjust the dosage of warfarin accordingly. This you will soon get used to doing, as for activities after the operation I skied every winter and mountain bike in the summer.
Hi ZippyABC. There are now tissue valves on the market that are projected to last 20 or even 30 years, although that has yet to be proven. Have a look at Edwards Life Sciences and their Inspiris valve. Having said all that, you are very young and if you go the tissue route you will almost certainly need a replacement at some point, whereas a mechanical valve is more likely to outlast you. The choices we have to make on this journey aren't always easy but we are fortunate to have those choices and the opportunity to enjoy many more years of good quality life. Good Luck.
I had Aortic valve and root replacement and then a Pacemaker fitted in April this year at 54.
I too had been fit and healthy and had no idea that I had a congenital heart defect, fobbed off for years, but thank goodness I stood my ground last year and more tests were done, as I was told in March that without surgery I'd have 6-12 months to live.
I was against getting a mechanical valve because of the Warfarin issue. My hospital phobia and anxieties are so great though that the thought of going through surgery again with a tissue valve was the deciding factor.
My valve nurse told me to have a look on a website... Valve for life which has lots of information.
I'm also in a Facebook group called UK Aortic and Heart defects pre and post surgery. Everyone in the group has been through, or is about to have surgery and their advice and support really helped me.
I may be on warfarin for the rest of my life, but so far that's the only medication I'm on, unlike a lot of others in the group, some with tissue valves.
Good luck, make the right choice for you and take care
I had a mechanical valve fitted aged 52. I had a choice although mechanical was recommended due to my age. I went with that, as I didn't want to have to go through OHS again. I feel it was the right decision for me, as the operation is major and the physical and mental recovery takes time. I'm lucky as I only drink alcohol occasionally, so have not felt impacted by limits. When warfarin levels settle, I only need checks about 6 weekly. Activity wise, I do what I did previously and wasn't doing contact sports. Such a difficult decision to make, only you know what is right for you and your lifestyle. Just get as much information as you can to do so. I wish you all the very best.
morning and welcome. I am fairly new on here. I had OHS 16 weeks ago today. I am now 54 and had a mechanical valve. I have read your post and sympathise with you, its a tough decision. I too, had little or no symptoms so when i was told surgery was needed i was in complete shock. From my own perspective i would not want to go through OHS again anytime soon, dont get me wrong i had no issues, and am feeling great, but its alot for your body and your partner/family.
Anyway what i want to say is that i am on warfarin and do have a drink when i want one, i am not a heavy drinker but likewise im not a tea totaller. Before my operation i avoided alcohol for 4 months in an attempt to get get fitter and in tip top shape - which i would highly recommend! Makes the recovery faster in my opinion and experience. So, there are now so many 0% beers, wines and prosecco (M&S rose prosecco fizzero is amazing btw), that you can still enjoy social events without the alcohol if you prefer to stick to what they are telling you. I am sure there are plenty of folk on here who do drink a little with no issues.
In regards to warfarin, once you get your levels right its not an issue, i have a home testing kit so can test if we go away and i am still going to anticoagulation clinic every 2 weeks, even thoight they think every month will be OK now, but for my own peace of mind, i still want them to check it! Thats just me getting comfortable with it all. Once i am, you can even get your own kit calibrated with the clinics and send readings to them so you dont have to go in, so it does get easier.
I hope you find the answers you are looking for, the above comments are from my own perspective but please dont think that a mechanical valve affects you negatively, i am half way through my cardiac rehab and ready to really increase my jogging - some of the trainers NHS told me jogging isn’t advised yet BUT i have challenged them and i was jogging after 3 sessions, so we are all different and the guidelines dont fit each and every one of us. For example recovery times and activities you can do post surgery - we are all different and all heal at different paces. You too will find your own recovery time and will find a way to adjust life with whatever valve type you have. Which hospital are you having the proceedure?
Wishing you all the very best with your decision making.
there are some other non mech valve optiins that last longer and dont require tissue valve.
Do you have aortic stenosis or regurgitation? If only regurgitation you can get a valve repair, where you keep your original valve, so no warfarin required.
The other option, which is new, is the Ozaki operation. They make a new valve out of your heart sack pericardium and unlike man made tissue valves this does not calcify, so should last much longer than a tissue valve. Dr. Cesare Quartto at the Brompton does this surgery.
Finally, there is the ross procedure. This is a highly specialised operation, where they switch your hearts pulmonary valve into the aortic position. They then replace your pulmonary valve with an humsn donir valve. This operation is like a tissue valve for decades. However, you will need multiple reoperations after 20-30 years, since both valves will fail again and often not at the same time. However by the time these fail, they might be sble to do TAVIs on both valves instead.
With the mechanical valve it is a one and done thing.
I had a tissue valve when i was 34, which lasted 8 years abd now have a mechanical valve. I dint drink much so my lifestyle hasnt changed much. Although i had a world class surgeon the 2nd time, and less complicstions thsn first time, i can now see why the mech valve one and done opton is attractive.
Make sure you check all the options above. I originally wanted ross, but if you have a dilsted root like me, then ross fails early. If i had to do it all agsin today, i would prob opt for Ozaki.
Good luck in whatever you do. There is no wromg choice
Morning, I had a Edwards Carpentier Resilia aortic valve, some two and a half years ago at the age of nearly 56 years old, I also had the rising aorta replaced too. Due to the aortic graft required ,for the rising aorta operation and having conducted my own Google research about the difficulty of any future replacement,, I asked my Consultant what he would do if in my exact circumstances. Whilst everything had always pointed towards a mechanical valve, he told me that he would personally chose the bio-prosthetic valve based on quality of life. Whist surgeons are generally sit on the fence and explain both options, if you ask your Consultant Thoracic Surgeon his personal view he or she may tell you.
The valve I have is man made and supposed to have a 20-30 year shelf life. Let’s hope that is accurate touch wood. The plan in my case should future intervention be necessary, is a valve in valve replacement via TAVI.
Like many above and yourself, I too was a lowly age of only 49 when I had my diagnosis. I had a bicuspid valve and little to no symptoms up until my issue was discovered. I opted for the mechanical valve and I am glad I did. Open heart surgery is not something I fancy again, not just for me, but also my family took it terribly hard.
I was advised to go for a mechanical valve by my surgeon, as in his belief the younger someone is (that is us) the quicker a tissue valve wears out. His estimate was between 7- 10 years.
The warfarin, of course, was a concern, but it shouldn't have been. I am now three years post surgery and do pretty much what I want (no not Oliver Reid either). I certainly have a few drinks once in a while, but have a home testing kit and usually test the following day to see where I am, it takes about 2 minutes. I go to the doctors surgery about once every eight weeks for a confirmation test and this takes me about 20 mins, that includes getting there, parking, test and getting home. The test itself is no more than a couple of minutes. I am not aware of any long term health issues with warfarin, other than possible excessive bleeding. Its not all plain sailing though. I do hear it clicking sometimes, particularly at night, and that is something some people are bothered by.
The choice ultimately is yours and I think you would be supported either way, as it is such a personal thing. Don't try and justify yourself to other people, it's you, no one else. Sometimes you just want what you want for no reason that you can explain.
All the best and if you live any where near Taunton I am happy for a chat if you want.
Zippy, to me this is a no brainer. Reduce the alcohol and live a longer, healthier life! There are so many non alcoholic drinks on the market which will allow you to mix your drinks. Becks full strength for your first drink, Becks Blue Zero alcohol for your second. No more fuzzy heads the morning after and kinder to your liver.
I'm an ex publican on warfarin and choose not to drink any alcohol because i have more severe heart issues.
Hi, I had an Edwards Inspiris tissue valve replacement 3 years ago at 67 (surgeon’s suggestion) for my AVR. I was told they can last up to >20 years and any replacement would be done by TAVI, not further open heart surgery. A friend of mine had a TAVI last month for his aortic valve and it took about 20 minutes and, as I understand it, they didn’t even give him a general for the procedure. So quite routine apparently. I think the warfarin consideration must be a very real one for a younger person although what I believe is a constant ‘beating’ of the mechanical valve is not something I’d savour. I very much left it up to my surgeon as this was an entirely new arena for me however I think you’re right to research your choices. I wish you good luck and don’t worry yourself about the social life/alcohol considerations, you might have a doctor telling you to stop drinking at any point in your life to aid your health 😄 Sue.
I had my AVR done back in 2012 at the age of shortly before I turned 46, I had lived with the knowledge id need it done at some point.
I had a mechanical valve, so have been on warfarin ever since, I do try to live and eat healthily, I exercise (walking) every day.
Probably unlike some on here, I do still drink, I don't really drink during the week, but I do at the weekend.
I would say I probably drink 1-2 bottles of wine (prosecco being my favourite), i try and be consistent, every now and then I do have a heavy weekend, but, that's not the norm. With warfarin consistency is everything. I'd suggest moderation not abstinence.
Good luck with the surgery
Hi, I am 52 and due to have an AVR within the next few weeks. I was initially told I would be given a mechanical valve and hadn't realised I had any other option until I did my research. Having weighed up the options of a mech valve lasting a lifetime but taking warfarin for life as opposed to a tissue valve with a pretty regular lifestyle albeit facing a replacement in a few years, I have opted for the tissue valve. My surgeon has agreed to fit the Edwards Resilia Inspiris valve. My surgeon told me I have the option to go mechanical next time and it could be at that stage that it will fit more with my lifestyle.
My decision was based on the fact that I dont want to be tied to the regular blood checks, there are risks with warfarin and I didnt want the risk of hearing a clicking valve! I want to have the op and pretty much move on with my life for the next few years without the warfarin.
I battled over my decision for quite some time but I am happy with my choice now. I hope you come to the right decision for yourself and I wish you all the very best with your op.
Hi Rachel. I am really interested in reading your post as I am a little older than you (55) and really finding it difficult to read posts from anyone at our age choosing the tissue valve instead of the mechanical valve. Is your Edwards Resilia Inspiris valve a new type of valve and was your operation OHS ? Cath x
hi Cath. I havent had ny op yet, i found out today that I am having it done on Monday. It will be OHS. I think the Edwards Resilia valve has been available for about 4 years . I know two other people who have had it fitted this year and they have no regrets. Take a look on their website, there are videos you can watch of surgeons etc discussing it.
I am sure you will make the right choice for yourself. Always happy to chat xx
I hope the operation goes well. It will be nice to hear how your recovery is progressing so keep us updated when you can. Good luck and look forward to chatting soon. Cath x
I do understand that you are young and presently have a lifestyle where alcohol plays a large part but seriously, do you really need to drink to have a good time or to just comply with others? There are plenty of non alcoholic alternatives now that are really good - even at beer festivals. I had to stop drinking 30 years ago when I started taking opiates and have genuinely never missed it. I can socialise just as well without it and simply say "I'm not allowed alcohol".
I have read through a lot of the replies and they are all worth considering - at the end of the day it is your choice after all. What I can do is share my experience in the hope that this will assist you. I had my Aortic valve replaced at age 32 when I was fit and healthy apart from a leaking valve. I opted for a mechanical valve with warfarin to be taken for the rest of my life and the valve has been working well for over 34 years - I have also never had a problem with Warfarin either. Blood tests every eight weeks if stable, every couple if weeks if fine tuning is needed -- local hospitals tend to offer more flexible appointments so the amount of time lost to work.was minimal and I was able to work round the appointments without ever taking leave or time off. I also changed jobs around 15 years later and held an exciting highly pressured safety critical position for 15 years until I opted for early retirement. I can honestly say that there is nothing I wanted to do which warfarin or the mechanical valve stopped me from doing. However, I was a very light drinker, partly because if I was out socially I would usually have to drive, partly because alcohol is something I can take or leave, so I understand your concerns about your social life. As others have pointed out, there are plenty of alcohol free drinks out there, and having recently had a glass of normal lager on holiday it actually tasted quite unpleasant in comparison to the alcohol free lager I am now accustomed to!. The occasional alcoholic drink shouldn't give you a problem.though, and excess alcohol in itself puts a strain on your body as you get older. Personally I would opt for the mechanical valve, as it will last a lot longer and will also be more able to cope with the demands of an active younger body than a tissue valve would. If you can test your INR at home your life will be even less disrupted. Which ever you choose, I wish you well and let me know how it goes.
I had an aortic valve replacement 3 months ago (my valve was leaking and couldn't be repaired.)
The prospect of taking Warfarin for the rest of my life, which would be the case if I went for the mechanical valve, totally put me off. I understand that it has some chemical interactions with food and drink etc. Plus, I do intermittent fasting and warfarin would not be a good choice for me.
In the end I went for a Bovine valve which does not require blood thinners. The downside is that it will only last for 20 years and then I will need a new one.
I am aged 53.
Best of luck.
//DK
I was also diagnosed with an aortic valve stenosis....no symptoms but a bicuspid valve. In December 2018 aged 58. I opted for an AVR with a mechanical valve. I have no regrets. Managing warfarin i have found to be straightforward....helped by self testing. I think the key thing to maintain a steady INR is consistency so binge drinking is probably not the best idea....although I'll openly admit I usually go OTT at parties etc. Generally if you drink then you're better off drinking the same amount every day....within reason of course!
hi. Im 51 and I’ve had two replacement mitral valves. My first mechanical valve lasted 4 months due to endocarditis. For the second valve I had a real dilemma in terms of choosing a tissue or mechanical valve. In the end my surgeon convinced me to go with mechanical valves due to my age. Warfarin can be a nuisance and I still get bothered by the ticking of the valve but I’d rather have these minor inconveniences than go through open heart surgery anytime soon. If I could have had a tissue valve with the longevity of the mechanical valve then it would have been a no brainier. Unfortunately both valves come with pro”s and cons. It’s such a personal choice though and you need to do what is right for you. Get as much information as you can so that you can make an informed choice. I wish you luck. 😊
I chose a tissue valve (open heart) last month at 50 and asymptomatic because a) I didn't want to hear the constant ticking from a mechanical valve, b) I'm quite physically active so didn't want the warfarin in case I fell (the bruising worried me more than the bleeding) and mainly c) I didn't want to be a perpetual patient with check-ups & blood tests.
I figured I could always have a minimally invasive second operation in fifteen years.
I had mitral valve replaced 10 weeks ago. Also a symptomatic or soni thought. It’s only now post op that I realise the mild symptoms I hadn’t really noticed. I was very active, enjoyed a drink and like you not sure which route to take. I’m 55 . I did a lot of research about the different valves and ended selecting mechanical due to longevity. My surgeon offered biological valve with the option of TAVI replacement at some time in the future, but I didn’t fancy the odds. The bio valve. An last 7-15 years, which could mean life expectancy of 14-30yrs. The surgeon also said I could only have one further replacement . I also asked if I could have bio then mechanical but was told that wasn’t an option due to my age - again worth checking. It seems over a certain threshold of 50-60, the valve choices are less ie the older you are they more likely to be recommended bio valve. Also check how many times the valve can be changed/ updated. Although there medical advances all the time.
As for the ticking, it’s only slightly noticeable a night.
The warfarin has been ok, levels not yet sorted but I’ve now got a home INR kit which has been a game changer .
Yes I’ve changed my diet a bit but the benefits I’m feeling are well worth it. I would also stress the need to get good rehab. Don’t underestimate the surgery. I had minimal invasive surgery, so small scar just below breast.
I’m sorry I’ve not had chance to come back to you all just yet but been busy with a brief dental procedure which I’m sure you all can relate to - only the one tooth out which was a relief as nurses had inadvertently put the willies up by saying that they can remove all your teeth! So, keep brushing and flossing kids!
I’ve decided to go for a biological tissue valve replacement, and the surgeons I’ve spoken to totally understand why I’ve made my decision. With zero other health issues presently, my working life and my social life as they are I want to still do what I currently do for some time to come. And when the replacement for the new one is required, hopefully I’ll be in a position to relax more. And whether that be a TAVI procedure or mechanical, we’ll see.
No guarantees obviously but I want to live life to the full and if my wife and I have a bottle of good wine at lunch on a Saturday and fancy another, I want to be able to do it. Also I want to not worry about me blundering around a 5 a side pitch and having a bleed etc. if I’m working abroad I don’t want checks and warfarin getting in the way of me seeing clients etc.
Somebody asked where I am - I’m in the City Hospital in Nottingham.
Thanks everyone for the support, kind wishes and advice. It’s much appreciated and I’m hugely grateful.
That’s good yo have made you choice. Good luck and le us know how things go. I have the same decisions to make shortly. Take care Cath x
Hi, Hopefully you'll have the a good life span out of the Tissue valve. Mine was trouble free for its 19 year life, best choice for me at the time. Get the op over and done with and don't look back.
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