Hi all just joined today. I was told in August that my Aortic Stenosis has become severe and I've been referred fir surgery. Would like to hear from anyone who has had valve replacement surgery.
Aortic Valve surgery experience? - British Heart Fou...
Aortic Valve surgery experience?
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Bookworm60
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Hello Bookworm60
Welcome to the forum, and the wonderful world of Hearties.
I had my Aortic valve replaced and bypass done 5 years ago. You don’t say what sort of information you are looking for. Is it the surgery itself or recovery.
What I will say is what ever your imagination is thinking it’s no where near as bad as we think.
If you need talking through what happens and what to expect just post and someone will be along to help. There are lots of us who have been where you are now.
Best wishes Pauline
Thanks for replying Pauline. I'm interested in how people decided which sort of valve to have. I'm 60 so a man- made one would be best I think as I need it to last a while ! But I hate the thought of being reliant on warfarin for the next 20+ years... Also how long did people wait for surgery ? My symptoms are very mild at the moment but part of me feels like I have a ticking bomb in my chest and I should try to get it done asap. Your experience would be helpful x
Morning,
I was 68 when I had my surgery and went with what my surgeon thought was right for me, I have a bio (pigs) valve. In the last 5 years things have moved on and now there are new valves, which have a longer shelf life and don’t need warfarin. There are members who have a range of valves so put a post up and you will a range of answers.
I am hoping that my valve as 14 years plus🤞The surgeon did say things were moving so quickly that by the time I needed another one things would be different, and hopefully I can a less invasive operation.
I can appreciate that the waiting is the hardest part, the waiting time seems to vary from area to area, I live in Scotland and in my case I was an emergency so sick that I was in hospital for 7 weeks before my surgery for them to get me as fit as possible for my operation, then transferred to the specialist heart hospital but I was only in there for 7 days and home, so you can see how these new valves make such a difference.
Every day I thank the medical team that gave me my life back.
As your surgeon given you any idea of length of wait? You will have the pre op assessment and dental appointment to have done.
Hope your wait isn’t too long.
Best wishes Pauline
Hi Bookworm60, I'm on the same journey as you. Just waiting and worrying.I hope that you get your surgery soon
Joanne
X
Oh no please don't worry. The Surgeon will perform this type of operation more often than a Dentist removes teeth! I've had 3 valve replacements or repairs. One through open heart surgery which took a while to recover from but then I had a pacemaker fitted and other procedures at the same time. The other two were done through the groin and took a lot less time to recover from. If you have any questions no matter how silly they may appear, this is such a good forum for honest and constructive replies.
Thanks Becks for replying and the reassurance! What kind of valve did you have and how long did you wait before you had surgery ? Any info gratefully received! X
All 3 were tissue valves and to be honest, pre covid, I was seen immediately. It took me by surprise because I was offered the first valve within weeks of diagnosis but had to say no because it clashed with a holiday to Disneylan Paris that I had booked ! There are some advice sheets on this site which will help you and put your mind at rest. There is one for post op tips too. Little things like not lifting your arms too high to start and lowering things in the kitchen that you use regularly so that you don't have to reach up for things. It is natural for you to worry because anything to do with the heart ❤ is scary but there are lots like me on this forum who have gone on to lead a normal life after surgery.
This is probably the best thing I’ve read since my diagnosis !! I’ve repeated your quote about the dentist twice this morning already !! So positive and reassuring - I’m waiting for valve replacement I had my angiogram on Monday and they said hopefully before Christmas but it’s the limbo - your post has helped enormously and your right - this forum is sooo helpful !! Thank you ❤️🩹❤️🩹❤️🩹
Hi Joanne yes I have found it quite stressful but think I am coming to terms with waiting for a while. Don't know how you are but my symptoms are quite mild at the moment and not sure whether I want to just get on with it or make the most of my time before I have to deal with the aftermath of surgery ! X
Yes, ditto, although I'm now realising that my norm has probably never been everyone else's and my poor stamina was probably down to this.I had my first counselling session last night and she has given me some things to work on which may help with my anxiety
Joanne
X
Have just seen your query about warfarin. I was advised to come off Rivaroxoban because of my weight. I'm one of lifes mysteries I'm afraid. I can't put weight on and my GP was concerned because Rivaroxoban isn't so good for you if you are too skinny. I had been on it for 5 years and never really liked taking it as I suffered nose bleeds, would wake up with blood in my mouth and bruise at the slightest knock.I was switched to Warfarin a few weeks ago and all those symptoms have gone and I feel so much better for it. I know I have to be careful and the regular blood tests are a bit of a pain but they will stop as soon as my INR reaches 2.4.
Hi Bookworm60. I had my aortic valve and aorta replaced in December 2020 when I was 55.
I'm.nie 10 months on from surgery, back to doing 4 days a week at work, I work for a landscape gardener and this is hedge cutting season so pretty physical.
I had a mechanical valve as this will last a lifetime whereas tissue has a shelf life of approximately 10/15 years. The surgeon did recommend mechanical due Tommy age but the thought of having ohs again when I'm in my 70s didn't appeal to me.
I am on warfarin and currently I have my INR checked every 8 weeks. To be honest it's not a problem for me taking this tablet, it's just part of my daily routine.
Recovery after surgery was the hardest aspect and it does take a while. I'll be honest and say it was a good 4 months before I felt anything like myself but we are all different and recover differently. Being an active person I found this period very frustrating.
You will experience pain throughout your recovery but most if this is muscle and nerve damage repairing and your rehab team will guide you and reassure you through this, the nerve pains are the worst and I'm still getting them occasionally. I found a hot wheat bag, heated in the microwave helps and also get yourself a V shaped pillow, really helps with sitting and sleeping.
I can recommend keeping a diary of your recovery and put in positives frommthe day and little milestones like the first time you walk up stairs properly, make a cup of tea, anything really as long as it's a positive. I used thisnonnmy bad days when I was feeling down to look back on and its amazing to see how far you have come for example at the begining of February I was doing a 10 minute walk once a day, by March I was doing 3 20 minute walks and other activities had increased.
Good luck with your surgery, the surgeons are incredible and.the nurses and sisters are out of this world.
I hope this has helped. I had know idea I was even ill until November last year so was rushed in and although it was a frightening prospect, it saved my life so I'm grateful to my GP, surgeon and nursing staff for basically saving my life.
If you have any other questions then just ask and I will do my best to answer but please note, I'm not medically trained, my answers are based on my experience.
Good luck 👍
Thank you so much for this really detailed and constructive reply- it's so helpful hearing other people's experiences. I was told I had AS five years ago but it stayed minor for ages and has suddenly gone into severe category. I'm 60 and an active healthy person and feel like I'm far too young and well to be looking at major surgery ! Am quickly learning from this site that heart issues affect people at all ages - much younger than mine - and in all states of health 😔. I am seeing the surgeon next week and assume they will recommend an artificial valve but am worried about being reliant on warfarin and also see that some people find the noise it makes a bit weird to live with - guessing you don't find that an issue?
The surgeon will probably recommend a mechanical valve. From what I understand and the discussion I had, they don't like to perform the surgery twice if they don't have to and personally, having gone through it once, I certainly don't want to do it again. I won't lie, when I came home in January I've never felt so ill or weak in my life and wouldn't wish that or the pains I went through on anybody but it is your choice.
Taking warfarin really isn't an issue and if you miss a dose it really doesn't matter so I just have an alarm set in my phone for 5.45 to take my tablet, easy as that
As to the clicking of the valve, again I won't lie, it does click, it can be quite loud to the point in a quiet room my wife can hear it if I'm sat close to her. It ticks at night but gradually I'm getting used to it and it's disappearing. At night I put my ear buds in and listen to music or a talking book from my mobile which drowns the noise out and my sleep is really good.
It is your choice with the valve so I would research both types and find out what you think is best for you.
When I went into surgery u was a fit and healthy 55 year old who didn't smoke or drink and does a manual outside job. I think this is the reason that 10 months later I'm nearly back to where I was.
Good luck 👍
Hello I’m at the stage where my moderate stenosis is progressing into severe. I’m obviously very worried about OHS. I’m seeing my cardiologist on 10/3. My question is could you manage walking up stairs when you first come home from hospital ? BTW this is a brilliant site.
Yes I could walk up stairs, one step at a time though. They do check this before discharge and over time it becomes easier 👍
Thank you for your reply. I’ve been worrying about that Ali g with the whole experience!!
Hi Bookworm,
I've had both Tissue and Mech valves, currently with mech AV and MV. Valves are quiet and don't cause any concerns on that front. What makes you worry re- warfarin?
Best wishes
Heed
Bookworm60 in reply to
Thanks so much for answering. Ref warfarin just don't much like idea of being dependent on it but guess it goes with the turf... But also I have nose bleeds fairly regularly and am a bit scared that's not going to be a good mix with blood thinner! I've seen a few people say the mech valve noise it quite obtrusive. Good to hear that's not everyone's experience.
in reply to Bookworm60
If you bleed, I can understand your reservations with warfarin. Everyone on blood thinners has there moments, but, it's not as scary as some people think. It's fairly straightforward to live with, and doesn't have to be a complete life changer, as long as you know your tolerances. As I say I've had both Tissue and Mech, and my preference is Tissue, but, that's not what I've got, so I make the most of it. The tissue AV, lasted 19 years, fitted in 94, so it was an old generation. Ask about the new generation of Tissue valves, the life expectancy of them is very encouraging.
Bookworm60 in reply to
Thanks for this. I understood tissue valves were only good for 10 to 15 years max. I'm 60 so if thought I could get 19 years I'd be quite happy I think . Do you know if your experience is unusual and can I ask if you felt well fir the whole time ? Do you mean you had a tissue valve 19 years ago and have now had a mech one fitted ? Hope you don't mind me asking such direct questions ! Feel free to ignore me 😊
in reply to Bookworm60
No problem. I had the Tissue AV fitted in 1994.I expected it to last for 15 years max, but probably a couple of years less. I was 33 at the time, so my plan was always three surgeries, Tissue each time, the 2nd replacement at about 45, with a third op at maybe 58 or so. Anyway the valve just kept on going and going until 2013, I had no health issues, until I started having migraines and the annual Echo showed deterioration. I was more or less in no-mans land at 52 timing wise, and felt it was unfair on my family to go through it for a third time. I changed tack and went for a Mech valve, knowing the potential problems with warfarin. That said back in 2013, the new gen of tissue valves weren't avaiable. I've no idea if my experience of the AV lasting 19years is unusual or not, but they are now saying that 25-30 years is possible for the latest models. There seems to be plenty on here having them.
A second surgery is always more risky, and unfortuntely the surgery in 2013 had many complications, so I was redone again in 2014, with my current Mech valves.
Hello Bookworm 60I had OHS in March this year aged 52, to replace my aortic valve and other bits of my aorta. I was recommended a mechanical valve due to my age. I certainly would prefer not to have to go through such major surgery again. Re warfarin, I have now got used to taking it and usually have my INR checked about 6 weekly.
The clicking? Well, sometimes I notice a clicking sound if I lie on my side in bed. Other times I don't notice a clicking sound but am just more aware of a louder heartbeat. I have learned to find this reassuring as it reminds me my heart is working ok.
The need for my surgery came out of the blue when by chance, it was discovered I had an aneurysm 5.8cm in size. I was due to have urgent surgery but ended up being in hospital 6 weeks before the op could go ahead due to other issues.
Recovery - does take time but going slow but steady and following all advice is the way to go. I'm now 6 months post op, have been back at work since July but had a 6 week phased return. I am walking and doing some slow jogging, and hope that I may end up fitter than previously.
I wish you all the very best!
Thank you for sharing this - much appreciated ☺️
Hi Bookworm60I had my aortic valve replacement on 01st October and came home two days ago.... Quite fresh....
I am 40 and I was offered a Ross procedure, where your defective aortic valve is replaced with your own pulmonary one. The pulmonary valve is then replaced with one made of a deceased donor tissue. Like you I was offered the option of a mechanical valve too, but my active lifestyle and young age were the main factors to make me feel I wasn't ready to gd ton warfarin for life.
The truth is there is no right or wrong, it all depends what fits in with your lifestyle. After the initial call with the surgeon, I was told to do my research and come up with as many questions I had ask, which I then emailed to the surgeon. He answered them all and that helped me a lot to decide what to do. I will probably need Re operating in 15 or 20 years, but I am OK with that.
I would suggest you to only worry about what valve to choose at the moment. You will have time to the research and ask about the whole process. And we are all here to help you. This group has been incredibly supportive for me throughoutnmy journey.
Fabio
Thank you so much Fabio really helpful. I so appreciate people taking the time to share their experiences. I wish you a speedy recovery ☺️
I had AVR in July 2019. Two days after a successful op, without warning I had what at the time was a very frightening experience when my whole heart felt as though it was bouncing around my chest cavity. As I was still connected to various monitors some visible to the nurses desk out in the corridor a nurse was with me within 2 minutes. It turned out to be a condition called atrial fibrillation and after being placed on a drip (Amiodarone) my heart returned to normal after about half an hour. I mention this not to frighten you but to let you know this can happen in around 35% of cases. This was confirmed by the nurse. What surprised me was that being such a potentially common event no-one had warned me of this possibility. The nurse said quite rightly that my surgeon should have advised me and I totally agree.
So the chances are you will not experience this condition but if you do and your surgeon has not mentioned this possibility, you will know at least know what it is and that in my case after taking Amiodarone tablets for 3 weeks I have had no further issues and have been leading a normal life ever since.
Thank you for the warning 😊. Glad you are well now.
Hello Bookworm60. Your surgeon will discuss with you what valve he thinks is the most suitable and take your thoughts into consideration. A lot of people have little machines now to check their blood status at home , if they are on long term Warfarin, and those I know manage very well .I also had atrial fibrillation after my AVR surgery , apparently it's quite common , but it stopped quickly although they left me for a few weeks on Amiodorane. Just to stabilise things.
Hi Bookworm60. Welcome to a club you never wanted to join! I see you've had a lot of useful replies already but if it helps I had an AVR in Dec 2018 age 50. I'd assumed I'd have no option but to go mechanical but, like you, wasn't that keen on the Warfarin issue. So I was pleasantly surprised to be given a choice, and ended up going tissue, the Edwards Inspiris Resilia, which is a new-generation valve that 'should' last 20-25 years apparently - though I guess I'll find out! My take was, get 15-20 years Warfarin-free (at least) and see how the technology has improved by then (for eg the TAVI keyhole procedure already seems to be more common on the NHS than it was when I had my operation). Plus, as my surgeon pointed out, while a mechanical valve should mean not needing another operation that can't ever be guaranteed.
I've personally been very happy with my choice so far. The only drug I take for the valve is a daily low-dose dispersible aspirin, though separately do take medication for BP. But it is a very personal choice and there is no 'right' answer. My choice does mean I've made the call to have another operation at some point, but it is one I'm comfortable with (though ask me again when they're wheeling me down to theatre!).
As to your question on waiting times, my experience was pre Covid, so not sure how relevant it now is. But I was told in the June that I'd reached the point of needing surgery. I then saw the surgeon and pre-op tests in August and then had to sit on my hands and wait until December for the operation actually to happen. But I also feel I was lucky not to have to deal with any postponements or cancellations.
Finally, very best of luck. If it's any help, while the operation wasn't pleasant, it was, for me, much more straightforward than I had feared. I was in and out in a week and, though sore and tired, came home much more able than I'd imagined I was going to be, and it was then just about slow and steady recovery. I'm sure you will be in good hands; I have nothing but praise for the NHS teams who looked after me. And feel free of course to ask anything else as that's what us hearties are all here for! Take care Nic xxx
Hi Nic Gosh I am SO glad I came into this site! I have been struggling to come to terms with what's happened, having had the huge good fortune to be fit and healthy all my life. I live in a tiny rural village and work 4 days a week. Not being able to drive is catastrophic really. Ho hum. Anyway finding all this lovely support and advice has really lifted my spirits. Thanks for the info ref valve choice. People will obviously have lots of different reasons for their choices but at 60 if I can get a tissue valve that gives me 20 years with a possible TAVI as an ' extension' option I reckon I'd take that. I'm seeing the surgeon next Friday so will discuss. I've been told wait time is likely to be 9 months but tbf my symptoms are very mild ATM. If only I could drive 😔. Thanks for your help. Penny
Good luck Penny! Yes, sounds like you're thinking this through very clearly, and sure your surgeon will be able to advise. Yes I came to this site pretty much at the same point you are - panicked about valve choices and the whole enormity of the whole thing - in summer 2018, and the support ever since has been amazing. The whole process also does your head in, the mental element/terror, is massive. So if we can offer any reassurance please do ask away, however 'stupid' you feel it may be (which it won't be). Nic x
in reply to Bookworm60
Hi Penny,
Have you been told not to drive?
Nic25 in reply to
Hey Heed1961l. It's normal that you're told not to drive for 6-8 weeks after this operation as your sternum needs to heal? Steering and operating the gears are challenging (and sore) before this period is up, at least from my experience. Plus your chest being jarred or, worse, in an accident wouldn't bear thinking about! Just if that helps. Nic x
in reply to Nic25
Hi Nic, Thanks for the info, but, I've been through OHS three times to date so I'm fairly well up to speed on the do's and don't. 🤣
I've probably got the wrong end of the stick, but, I was reading it that Penny couldn't drive now.
Cheers
Heed
Nic25 in reply to
Ah. Sorry for sucking eggs reply in that case Heed. Or just as likely to be me who has got the wrong end of the stick! Hope you're all in good health now as well in that case. Three OHS, wow. Take care Nic x
Bookworm60 in reply to
I've been told by Consultant that as soon as AO becomes severe and you have any symptoms at all you are disqualified from driving by DVLA. I checked their website and it seemed to confirm that. Please tell me if you know different! I may literally have to move house.
in reply to Bookworm60
There was a question on driving last week.See link.
Some good responses.
Personally, I drove all the way up to my first two surgeries. The third I stopped driving a few weeks beforehand as I felt I was too unwell.
My stenosis was so severe when diagnosed I had passed out on a couple of occasions. My consultant told me to stop yoga but never said anything about driving. In hindsight maybe I should have.
I don’t think you need to inform DVLA but your insurance could be invalid if you haven’t notified insurer of any changes to your health. This didn’t occur to me - although I did tell them post-op that I wasn’t driving (which makes no sense to me)
I've been on warfarin for just over 9 years, I had a mechanical AV fitted in 2012 and a section of the aorta replaced due to an aneurysm, I was 45 nearly 46.I've never really had a problem with warfarin, I still enjoy a drink, eat whatever I want, I'm still active in the gundog world, working and training my dogs for beating, up until recently I was working with my hubby doing plumbing and electrical work, there's some heavy lifting involved in the job, lots of up and down stairs!
Yes the mechanical valves tick, but, it's not something that's ever been a concern, I always feel sorry for anyone that sits near me, they must wonder what the ticking is😉
My time in hospital was more memorable than my recovery once home.
I've had to have a pacemaker fitted since the ohs and that's the only time that being on warfarin has caused an issue.
Whichever valve type you decide to go with, I hope you don't have to wait to long and that everything goes to plan, with a speedy recovery x
Thank you !
Hi Bookworm60,
I’m waiting, like you, for valve replacement. I spoke to the surgeon in May and he advised that I’d probably wait for 3-4 months for my surgery (mitral valve). I’ve now been waiting 5 months and I still have no date - COVID is causing significant delays unfortunately. BUT the surgeon’s secretary has been fantastic and I’ve been able to ring her every 2 weeks for an update on the waiting list. I’m 56 and still working full time and I know what you mean about the ticking time bomb but I think we just have to trust that the medical teams know when we reach the point where we can’t wait any longer? Good luck with everything!
Morning. Interested to read about your surgeons estimate of waiting time for surgery for MV surgery. Can I ask where? I’ve been diagnosed with leaking MV with severe regurgitation but have no symptoms. I’m not even on waiting list and been told it’s a long wait. I’m in north of Scotland so I’m curious about other peoples experience of waiting.
Hi,
This is for Papworth and I have leaking MV valve and severe regurgitation. I do have some symptoms such as more breathlessness and I do get really tired by end of week, but I’m still working as a primary school teacher. I do find it increasingly difficult to project my voice over 30 six year olds but I have been told by Papworth that I should try to stay at work. I was due for surgery in September 21 but obviously this is constantly being delayed!
Thanks for the info and the consequent reply from swing your pants. Hope it’s true that the wait is the worst bit. As a retired teacher I sympathise with you struggling to be heard in the classroom. On the other hand, less time to obsess about heart problems and ops. Do post how it’s going
You have lots of replies which I haven't read.I was severe to life threatening.
At 55 I knew nothing about my condition until I collapsed in Reading town centre after a Curry with some workmates. I was in the Gym the day before!!
Ambulance attended and I convinced them I was Ok and eventually was allowed to go home via Train. Lots of grief from the Wife etc I saw my GP the next day.
A murmur was diagnosed. Lots of tests shortly after diagnosed me as severe to life threatening!!
I had medical insurance so I was seen by pretty quickly.
When I met my Surgeon I told him what I wanted. I did my homework big time.
I wanted a minimally invasive procedure and an Insperis Resillia valve.
March 2020 it all happened. My first time in Hospital! A week after surgery the UK went into lockdown and all procedures were cancelled.
On reflection it wasn't that bad. Yes, it hurts for a while but recovery is only a couple of weeks.
I was back on the Golf Course in 6 weeks and now feel better than ever.
NB on my release day I went to the Pub with my mates! I couldn't open a pack
of peanuts but I could drink a pint of Stella.
A year and a half on I'm as good as new!
Hi there Just looked up the valve you mentioned and it looks great. Three questions if you don't mind answering them ? (Feel free not to if it's too intrusive) You mention you had medical insurance - do you know how much the procedure cost? Did you have keyhole or OHS and where dud you have it done ?Thanks ☺️
No worries. Totally happy to answer.I think the whole procedure was around £40k.
I had minimally invasive OHS at The Royal Brompton in Chelsea.
They still crack you open but only about 5-6in so I only have a small scar.
I was warned that this procedure wasn’t guaranteed until they first crack you open I.e. access to the Valve. I was lucky.
I can’t recommend that Valve enough! No blood thinners and no ticking that you have with a Mechanical Valve.
The IR Valve should last 20 years and when it needs a service it’s a non invasive procedure to replace. No brainer for me.
Hi bookworm. Well I’ve just recovering from my 5th surgery which was mitral valve replacement with a mechanical valve and so of course, am now on warfarin. However, my aortic valve is a tissue which was last replaced in 2012 and currently still going strong so I’m expecting another 4-5 years out of that and, when it eventually needs replacing, it’ll be through the groin and not open heart. As for warfarin, it’s early days and I’m still trying to get mine stable. Finding it’s not affecting my diet so much but I’d did take the decision to go teetotal which, as a gin and red wine drinker, was tough. However, have found loads of alcohol free substitutes which means I don’t miss alcohol at all. As others have said, the thought of what you’re about to have and the reality of it can be very different. You’ll be surprised how quickly you recover. We’re all here for you for any questions you have
HiMy husband had an enlarged aorta so had OHS in 2019 and at the same time had to have valve replacement too. He had been told ahead of the op that he might need to have valve replaced and was told that because of his age (56) a mechanical valve was recommended. We did not really give it much consideration and just went along with what was advised.
My husband was fit and healthy when he went in for op and op went smoothly. As my husband never had any symptoms pre op he did find it frustrating that after op he felt a lot less fit and it took a while to regain fitness and he kept getting out of breath. I think it is really important to realise that open heart surgery is major surgery and recovery will take time and one must not get disheartened that it takes a while to be able to do things one could do before. In terms of the valve I will be very honest and inform you that my husband does struggle with the mechanical valve and the invasive thudding sensation he feels from it. He says it is not a clicking noise but an intense thudding that he finds very hard to get used to. I will say though that I do believe from reading on this forum that my husband is very much in the minority in how his valve troubles him. He has tried CBT (cognitive behavioural therapy) and he does try to recall the strategies this has given him to help him come to terms with the mechanical valve. With a mechanical valve you have to take Warfarin for the rest of your life. It took nearly two years for my husband's INR to settle in range but now it has been within the required range just about for nearly 9 months. I must add that all the doctors and nurses at the Heart Institute in Bristol were outstanding . I do hope you can get as much advice as possible to help you come to a decision as to what valve to have and that your operation goes smoothly with as quick a recovery period as can be hoped for. I appreciate that it is very hard not to be worrying while you are waiting. Try to remember that the surgeons who do these operations are highly skilled and do know what they are doing. I hope the waiting period is not too long.
Don't even think about it had the Aortic valve replacedAnd stent 12years ago self elected and still fine , do it while u are fit !
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