My AVR is happening on Monday and I still haven't definitely decided on a valve!
I am 64, a lady and no health conditions, other than the failing valve. I am active but not sporty and fit and healthy. I want to travel again but Europe is fine for me, so hopefully no insurance issues. What I would love to know is a few more experiences, honest and brutal as you like, about any side effects of Warfarin. I do not mind taking it or testing bloods myself but am wary about issues relating to it.
Please tell me everything....I must decide!
Thanks for your help.
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Caterina2
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I suggest asking a fairly random group of people for their side effect experiences from taking any medication will not serve as a meaningful guide as to how you, as an individual, will react to taking that medication. We all react differently, although the majority usually have no serious side effects. So the only way you will find out about any short or medium term side effects applicable to you is to follow your health professional's recommendation and, in this case, take Warfarin if it has been prescribed for you. And assuming you are OK, only you alone can then decide on whether you are ready to accept any long term risks and continue. Taking any medication comes with risks, but on balance they are normally outweighed by the benefits, or they wouldn't be prescribed for us in the first place.
And as far as travel insurance cover is concerned you may or may not find cover to your satisfaction according to the type of questions you are asked when filling out your medical details prior to the quotation for cover.
Thank you for replying and yes, I see what you mean about the risk of medications. My dilemma is that I cannot try it and decide if I want to continue. If I opt for the mechanical valve on Monday, it will be Warfarin for life, unless another less punchy but equally reliable anticoagulant is developed.
I now understand your situation better. All I can suggest is you discuss the risks of continuing as you are, against proceeding with a new valve and Warfarin, but against that you need to ask about alternatives to Warfarin should you proceed with the valve and then find out that Warfarin is not for you.
Hi LowerField. I believe Caterina's query is not about whether to have a replacement valve or not, but whether to have a mechanical one (which then means taking warfarin for life), or a synthetic/tissue one (which doesn't, but which has a shelf-life). Fortunately, I've so far avoided needing a replacement.
I am ten years older than you, so a non mechanical valve makes sense for me. I have that valve and it’s good to have zero ongoing medical stuff to deal with. I hear that the latest valves can have space for an additional valve, possibly TAVi,
at a later date.
I was able to chat to the surgeons at length. And my thoughts were to be guided by the guy who would be doing the op.
The professionals want to use tried and tested valves, which doesn’t really take much account of newer developments.
I think you are too young. !
Whichever valve you go for, it is a good time of year. You will have warm and sunny days to encourage your rehab.
Caterina, I see you have already received some sound advice. I can only speak from my experience. I have been taking Warfarin for the last 34 years and have never had a problem with it. Even when I have occasionally cut myself when shaving, I have never required any assistance in stopping bleeding. You will need regular blood tests every 2 - 8 weeks to ensure the INR is within recommended parameters but other than that life goes on as normal. To be fair, I don't drink so don't know how alcohol affects the blood thickness, and changes in diet may affect the INR, but with regular checks you should be fine. My valve also works well. I hope your op goes well next week.
Partly due to reports of some insurance companies not covering anything related to taking Warfarin and also, I suppose, the possible concern of having to watch INR levels when having a break. Some reports suggest that Warfarin is simply a routine and a way of life. It serves you, not the other way around. However, other reports suggest that it's an intrusion and has side effects. I know that different people react differently to meds.
I can completely relate to why you are finding it difficult to make a choice. I am about 15 years younger than you and had aortic valve (and root and ascending aorta) replacement in January of this year. In addition to a biological or mechanical valve, I was also offered the Ross Procedure. I agonised over the decision, consulted multiple specialists and spent far far too long on the internet.
I oscillated between all three options and in the end, I accepted that for me there was no perfect answer (given I had to have the surgery and all options were better than doing nothing), that having a choice is in fact a privilege (even though it felt like a burden) and I went for a solution that felt right for me given the lifestyle I wanted to live for the next 10 years or so.
Sorry, so no advice, but empathy with your agonising and I do wish you well for your surgery this coming Monday.
Caterina i understand your concern regarding quality of life and the ability to travel and hope that you are able to pursue your travel plans in the future.I started my heart journey on Rivaroxoban but because I am so thin (BMI 14) my GP swapped to Warfarin. I'm still in the early days so have regular INR tests which are intrusive but I'm retired so its a trip out!
I have no side effects that I am aware of and I am looking forward to my first holiday for 4 years, in June.
My advice to you is to go for the Edwards Lifesciences Resilia Valve. It's new and research is very promising. No medication and simply get on with your life no limits. However make sure your surgeon has experience with this Valve as it must be inserted correctly etc. Good luck.
I wouldn't stress about the warfarin, it really is no big deal. The only side effect, that I am aware off, is bleeding. However, I have cut myself several times and no issues.
With regards to monitoring yourself, again I do it about once a month and go to the INR clinic about once every 6-8 weeks as a check. I eat and drink most things, but nothing to excess.
At 64 it really is a conundrum, you are right in the middle of age recommended valve types. If your surgeon can offer a TAVI as the next op, I would go for a biological valve, it is likely to last you 15-20 years. If they say it can't be done by TAVI next time, I would go for mechanical.
Hi caterina, I had the Edwards Inspirilia valve fitted in November 2018 aged 55 like you I found the decision difficult but was guided by my surgeon.... This valve can be tweaked by TAVI a few times he told me and as I'm fairly active and love my holidays this is what he recommended. I'm doing great on no medication at all my travel insurance is with nationwide... No issues... I planned a recovery trip /photo.... It was in the infinity pool at the top on the marina bay sands hotel in Singapore.... I made it in June 2019. Be guided by your surgeon they are the experts, it's not an easy place where you are now as it all messes with your head once you are in that hospital you are on the way to your recovery and to plan your recovery holiday. Best wishes and check my other posts for essentials you need for next week xx
Hi Caterina. I have had several tissue valves and 7 months ago, a mechanical which of course means I’m on warfarin so have got a good insight into both. This time, I didn’t have a choice in respect of the type of valve as I’ve had so much surgery (with more to come) they wouldn’t give me anything other than a mechanical, which was fine. Warfarin takes a little bit of time to get your INR stable but I have bought myself a machine now so I can test at home, or on holiday, and just send the results to my GP. Aside from making slight changes to my diet and only having the occasional drink now, I have no side effects from warfarin. Yes, you will bruise a little easier and bleed a little more but to be honest, it hasn’t really impacted me but I am generally more careful now not to injure myself. I still travel and yes, I can’t get insurance to cover me for anything heart related but that’s due to me having had 5 surgeries. Up until this most recent one, it wasn’t a problem. If I had known when I had my first surgery how many more it would lead to due to various issues, I may have opted for the mechanical valve although I was only 37 then and unwilling to take warfarin. However, I’ve just been unlucky to have had to have so many surgeries. I think at your age, if you have a tissue valve, you will probably need it doing again and not sure whether TAVR is done for everyone needing AVR as it’s generally older and more high risk patients so I think (and of course could well be wrong) you would still have OHS. Hope that’s helped but message if you want to chat
I had my me hanical valve nearly 3 years ago and I think the warfarin has effected my eczema but not too badly and now seems back under control. Otherwise all good and much better than the option of having another major op in the future although medical technology is advancing all the time.Haven't yet been abroad due to 'you know what' so don't know about insurance but had assumed, naively perhaps, that since I am considered fixed by cardiology it wouldn't be a problem. I'm 5 weeks between INR checks by GP so a holiday is no problem from that respect.
Hi I had a valve replacement in December, I had a reaction to aspirin so a mechanical valve was not an option - I’d decided on mechanical and I felt un comfortable having a tissue . ( Being a life long veggie animal lover it felt wrong ) However the choice was taken away from me and after soul searching I had to have a tissue .
Mine is the Edwards inspira which is a coated valve; which should last 25 years - I’m 62 so … Im cool with that !
I had first and last cardiac rehab this week and they told me to go away !! Your super fit and healthy !!! Hurray !!! I was back at work after 3 months and walking up to 5 miles after 6 weeks . And I feel so incredibly well , sparkier and more lively than I have in a very long time !!
This operation is big and the first week is a car crash , but do exactly what the staff tell you !! If they say get up - get up ! Move around - move around - the quicker you get going the better the recovery . I’m on blood thinners but should only be for a year and other meds - they are reassuring and I’ve settled with them . I am evangelical about my recovery and gushingly grateful for the surgeons and staff and the NHs and the British heart foundation forum which has been so very helpful . They are incredible snd brilliant people
One lady on this site said - when I was approaching surgery “ they do this operation more commonly than dentists take out teeth - it’s so routine now !!” This reassured me loads - and my experience has been so very positive !!
Look to post surgery focus on the summer when you will realise how very well and strong you will feel - whatever valve you choose the end result is amazing !!! Good luck and good health remember the beat goes on !!! ❤️❤️❤️❤️
I was 48 when I had my surgery 12 years go, so didn’t really have a choice as I didn’t want the risk or worry of potential further surgery. I went for a man-made valve as I was advised it would outlive me. That gives me a life-long blood thinners.
I have self-tested since the beginning. I invested in an INR device and get the consumable elements under the NHS. I load my results into an app, and receive my dosage instructions later that day. I don’t find it overly-restrictive. I’m mindful of what I eat and over time you get to know what works for you. I haven’t had problems getting travel insurance and over the years the cost seems to be only marginally different than for “ordinary” travellers.
Technology has moved on and other valve options are available to you which I didn’t have, but if it helps, I’m still happy with the choices I made …
Hi, I’m just over a month after my operation and at 53 I went for the mechanical valve. This means warfarin for life and regular checks with my blood levels to ensure I am taking the correct dose. To measure the readings yourself you would need to purchase a machine to test. These cost about £300 and the strips you can get on prescription as they cost about £70 for 24 strips which should be fine for two years when your INR levels are settled. The link is. diagnostics.roche.com/gb/en... Do check with your GP if they are willing to put the test strips on repeat prescription as this is only at the discretion of the doctors surgery.
I am 71 bloke and had a aortic valve replaced 10 weeks ago. I did loads of research prior to the op including valves, making a spreadsheet of advantages and disadvantages of each. Before I retired I was a research scientist and I still like to do the analytical stuff…
My son, who is an experienced physiotherapist, gave me some excellent advise he said: “Dad, you are having your valve replaced at Papworth Hospital with a leading experienced heart surgeon, I suggest you are guided by him”. So I did.
My surgeon said in my case he would advise a tissue valve - Magna Ease. The reason he gave for selecting this valve was because of the amount of data available showing how long it lasted without needing to be replaced. I stress the advise was in my case. He said the valve would probably outlast me!
So the best advise I can give is listen to your surgeon and ask all the questions you feel you need to.
Recovery needs to take its time, it’s a process. I found I improved day by day but it can’t be rushed. I am almost back to 100% fitness walking a few miles each day and love my life line (scar). Just been discharged from Papworth and my wife and I have booked a flight to go and visit the three grandkids in Florida. I am a very fortunate man.
Wxyz1234 - I am likely to be in the same boat as you were in as have 4.88 aneurysm in mid ascending aorta and dilated root plus a leaking BAV .can I ask whether in you case it was the aneurysm or valve that drove the surgery? So did you have mechanical or tissue valve and how long in ICU , then normal cardio ward? And is it about 3 months till things heal up? I do appreciate everyone’s experience will be different.
I am 62 and all the above was driven by finding I have this through incidental finding. This may or may not be interesting to others but while no one will say definitely it looks like the sternum pain that I was concerned about may have been an even more recent finding of chronic oesophagatis. Glad it’s been found tough?
Also there is a lifeguard on this forum ( sorry I can’t remember his name) who though that European or Uk guidance on surgical intervention in TAA might change from 5.5cm to closer to USA if 5cm. Any further update?
Hi Caterina2I had the Edwards Resillia valve 6 weeks ago, I am 63 and recovering well, I have every confidence in this valve lasting its design life of 25 years. As mentioned in other comments, no medication, and it can be replaced/tweaked via TAVI. I discussed valves with my surgeon and he said the decision could be made the night before the operation. This happened and was discussed as I was about to sign the operation consent form. I believe all the types of valve available will give us the life extension require, whether very active or just need to live. Have a good chat with your surgeon and see what he can do, be aware though I have heard some hospital trusts will not fit the newest valves, due to cost and lack of medical evidence.
Wishing you all the very best and that you have a speedy recovery
I'm also waiting for AVR but no date yet. I met my surgeon about a month ago and I've been advised to go for mechanical. This is due to my anxiety around hospitals in the hope that it will not need replacing (although no guarantees)My valve nurse pointed me in the direction of a website... Valves for life, to get as much information as possible beforehand.
I'm in the Edwards Resilia camp - had mine replaced 2 years ago aged 65. Like you, no other health issues. Mine's cow tossue rather than pig. Made the choice against mechanical because of Warfarin issue but more important for me was the warning that some people can hear the valve clicking. That would turn me into a gibbering wreck, akin to hearing a dripping tap for the rest of my life. Not being able to stop it, either. Plus - if the Resilia needs replacing they can do it via TAVI as the securing ring (or whatever) is designed to accept the incoming spare part new valve if it's needed.
Hi Caterina2I had AVR and decided on a mechanical, just because I was 54 and didn't want them opening me up again. I was already on warfarin for something else, so didn't faze me.
I did buy a machine (about £200 for a Roche) so I could do my own INR. The NHS provide the slides annually ( the expensive bit) and callobrate mine every now and then. No going to the surgery all the time.
I have given up alcohol but there is no need to? They will adjust your dose if you feel you want to carry on partying 😆😆.
It's a lifestyle you get used too. Don't over think it 😉😉
Hi. I had AVR last September and finally decided to go with a tissue valve. At the time I was 61 and basically between the ages recommended for each valve type i.e. too young for tissue and too old for mechanical. My surgeon left the final decision to me but once I decided he said he would have made the same choice. He also said if it ever needed replaced TAVI would be a realistic alternative to OHS. This made a lot of sense to me. The tissue valve also meant I was on warfarin for only three months. A few days before the warfarin was due to stop unfortunately I had a very severe nose bleed which required a hospital stay to resolve. I reckon I was just unlucky but to me if has confirmed my decision. That was my only hiccup. Everything else has gone well and I’m looking forward to enjoying the future. You’ll be fine. Follow the guidance from the experts and be realistic with managing your expectations. It will take time to recover but it’ll all be worth it. Also make sure to take up the offer of cardio rehab sessions. You’ll realise you’re not alone and a member of a very special club. Best wishes.
Hello Caterina2,I had an emergency Bentall procedure just over 2 years ago, my ascending aorta was 6.5cm and I was told I also needed a new aortic valve. I was not given a choice and had a mechanical one fitted. I have no side effects from taking warfarin and my doctors surgery is near by so easy to get my warfarin levels checked, which if ok is a monthly visit. The only thing that bothers me is trying to go to sleep as I can hear the valve doing its job. Most of the time it doesn’t bother me but I can hear it now typing this text! Good luck with making your decision and for your operation on Monday .
Hi
I was 66 when I had mine in January 2021
My surgeon suggested tissue so I went with what he thought best.
They are the professionals and the experts at knowing what’s best for you.
Like you I was fit but not sporty and had no other health issues.
Now I’m fully recovered. Walking and hiking up to 10-12 miles and enjoying my grandchildren. 69 in a few weeks and learning to live with the idea that I have a shelf life. Yes! That’s what it is. Who knows what’s around the corner of life?
By the time my tissue valve needs replacing maybe cardiac surgery will have moved on.
I take statins, beta blockers and aspirin and tolerating them well.
I’m going to Greece for two weeks in September as I always did do in the past - when we didn’t have the big C - my insurance has gone up but nothing drastic. It will go up again as I turn 70 like my husband. For both of us it was just over £250 as he has various health conditions too. We always get good cover.
I’d strongly advise going with what your surgeon suggests.
Hi Caterina; I had the valve replacement operation here in France 20 years ago. In fact when I was opened up the surgeon discovered that in fact, 2 valves were in need of replacement, Mitral and Aortic. In those days, unlike today, it was an extremely complicated operation as the chest had to be completely opened up in order to get to the heart. needing a very long period of rehabilitation, I understand that today the procedure can be carried out without this and is done through a vein. Anyway, I am now almost 85 years old and pretty fit for my age so the operation has worked for me. I have been taking 'Anti-Coagulants for the past 20 years, and apart from regular blood tests to check that the INR levels are ok, I have had no real problems. One gets used to doing the tests either by oneself or by a laboratory nurse. Go for it and good luck! Mike
I was in my mid-60’s when I had my AVR. I was also living a life similar to yours, by what you say, not sporty but active, no other health issues. When I chose my Edwards Inspiris valve it was down to my surgeon’s suggestion that it would be best for me. He said they can last for 20+ years and that was his suggestion. He gave me a lot of confidence so I took his guidance. I know a replacement, at some point may be required but that would be a TAVI which is much less invasive I understand. Since my operation 3 years ago I have been well. My recovery included some time in and out of AF but I am now stable and haven’t had AF for 2 years. I’m on Bisoprolol and a low dose aspirin every day. Like you my diagnosis of mild stenosis developed quickly into a situation requiring an operation so it was all rather difficult to take in initially. However there is a lot of support on this forum for those awaiting surgery and you could benefit from that. Good luck in your decision making. One more thing is AVRs are operations that are scheduled daily and very standard for medical staff. You will come across exceptional staff in the hospital and feel safe in their hands. Let us know how you do. Sue X 🙏
Hi Caterina2, I sympathise with your having to make the choice. Fortunately for me I was told by the surgeon what to have, but I hope now that I would have chosen a tissue valve given the choice. I had a cow tissue valve inserted by keyhole surgery, (TAVI) at the age of 69, as I'd previously had OHS for a bypass . I was told by the surgeon that in the unlikely event that I would need a replacement, that would be by TAVI also. Do be guided by your surgeon, and maybe a mechanical valve will be best for you, but if you are thinking about a tissue valve, it is very unlikely that you would need a second OHS should a replacement be necessary in the years to come. Good luck and many happy holidays in the future.
Hi Caterina, I had a Aortic valve replaced in 2017 , i chose mechanical due to the fact i was 54 and didnt want to have the op again . But if i could turn the clock back i would of gone for tissue as my warfarin has been a struggle recently (fine for the first few years) but had a tia and am struggling with stroke like symptoms .Not sure the warfarin has anything to do with that but had a low reading and since have had these symptoms. INR returned to normal but symptoms still persist .So i would have opted for the tissue 1 just for that case alone to avoid warfarin . Maybe im just unlucky as many others have no issues at all . Good luck with your op you'll be in good hands im sure
I had my Aortic valve replaced in 2016, I went with what my surgeon recommended for me, I have a tissue valve (pigs) I was 68 at the time.I wish you all the best for your surgery and a great recovery.
I am a 59 year old unfit woman who had an AVR mid November in Belfast last year- what a great job! I had a partial knee replacement a few years earlier and found that operation much more difficult- you will be grand.
My surgeon recommended a mechanical valve for me due to my youth (!) and I therefore take warfarin. I also have torturous arteries so arterial access wrt a TAVI would have been extremely difficult or indeed impossible.
I have INR checks every 4 weeks and it is beginning to settle and I am not aware of any untoward side effects. Like a previous respondent, the click of the mechanical valve drove me crazy for the first 8 weeks - now I hardly notice it unless I’m concentrating on my breathing during yoga.
Like others, I cannot advise you as to which valve you should choose. However, tissue or mechanical, TAVI or OH surgery, an AVR will bring you such benefit and reduce the anxiety correlated with having a severe aortic stenosis. You don’t need me to wish you good luck as you will be grand - but I will be holding you in mind on Monday.
I’m 51 soon to be 52 and I had major open heart surgery to replace my aortic root back in July 2017. They managed to preserve my existing AV so I didn’t have to have that replaced too. I suffer from AF and Wenchebachs Phenomenon. I was going to be put on an anticoagulant drug. There’s different types on the drug market now and was concerned that they was going to put me on one where I didn’t have to be monitored by testing. So I asked if I could be put on Warfarin and they did. She (my cardiologist) was very good and agreed after hearing as to why I wanted to be on Warfarin. At the start I was being tested at my GP surgery but after a year it was agreed by all concerned that I can test myself with my own machine (which I had to buy myself) at home, I get the lancets and test strips on prescription.
Being on warfarin I’ve not had any problems and I’ve been on it for 2 years. You do bruise easily and you do have to be careful not to cut yourself but it’s safe. They give you a yellow card (credit card size) to put in your wallet or purse to carry around to warn medical staff that you are on anticoagulant therapy, in the event that your unfortunate to end up in A&E after an accident.
Hi there, I can't really add much more to what other people have mentioned and suggested but I can give you my experience. I'm 44 now and had my aortic valve replaced 2 years ago and I'm very active. I originally thought i was going to have the new resilia valve but got talked into a mechanical on-x valve by 3 surgeons, a cardiologist and a couple of GPS. Yes I have to take a small about of warfarin now and I tick slightly but the fact that the valve will probably last longer than me out weighs the chance of multiple operations. Having been through it once I do not want to go through it again. Also there are American trials of apixaban for mechanical heat valves going on at the moment. I'd have to google the link but it's there. I've had to pair neck some of the sports I do. Easy ice climbing and mountaineering now and no more black or red runs on the mtb or snow board but I'll get over that. Travel wise as long as the inr is stable just get on with it and there are friendly places everywhere to get checked. All the best in your decision and what ever you decide out will be right for you. Take care and good luck for the op. Mike
Hi Caterina. Good luck with the operation and I hope you recover as quickly as can be hoped for. As your op is today you must have decided by now which kind of valve to choose. There are pros and cons for each and hopefully your surgeon will have helped you come to the right decision for you. Remember this is major surgery so allow yourself time to recover. Time is a great healer.
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