I hope my experiences might help reassure other people who are due to undergo OHS, in particular Aortic Valve Replacement, (AVR).
I am a 66 years old male, 3 weeks into recovery from a successful redo procedure. I had my first surgery 9 years ago to replace a failing bi-cuspid 'original' valve.
Both replacement valves being of the Edwards Resilia type, reputedly the gold standard.
Firstly I recommend paying little attention to Dr Google and the like. Rather use reliable and trusted sources of information such as the NHS website, your GP, Cardiologist, Surgeon and your hospital case nurse.
I was scared, anxious and apprehensive by the approaching reality of undergoing major surgical interventions. I would fixate on all the possible things that could go wrong, being out of control, and my life being placed in the hands of others and dependant on high tech medical equipment. For me and you this is a unique, mysterious and challenging experience to negotiate. However, we are cared for by a team of highly trained, highly skilled, highly motivated professional medical and technical experts who see the whole thing very differently; they know what they are doing, they are confident and competent, and for them our trauma and drama is a routine 'day at the office'.
The procedure sometimes described euphemistically as causing some discomfort and pain is a brutal assault, and left me feeling significantly 'bashed up'. Pain relief is available and I would recommend taking full advantage of it, especially the gas and air you are invited to breathe when the first drain is removed - keep on sucking it in as long as you are allowed - and then some more! I suffered from constipation, a common problem after a GA, and I took all the laxatives on offer. Three days without taking a dump seemed an eternity, and even slight straining caused considerable pain. It's quite a logistical challenge getting to the loo with all the lines attached - catheter, a drain, pacing wires, neck canular, heart monitor - and two nurses! Please obey ALL the recovery advice during your stay in hospital and more importantly when you get back home.
I'm fairly confident that my speedy recovery was, and is, partly due to my generally good physical condition prior to surgery. So for the best possible outcome: if you smoke, stop; reduce or stop alcohol consumption; be of optimal weight; get as physically fit as possible. Good luck with all that!
After surgery I had the most extraordinary, vivid and almost hallucinatory dreams and nightmares. I've been told this is quite normal and caused by the anaesthetics and opiates. Really quite enjoyable.
The question of tissue versus mechanical valve is probably the most difficult decision I had to make, and one in which I had complete autonomy. In my case, the first time round at the age of 56 I was recommended by my cardiologist to have the mechanical version, (the life of which would more than likely outlive me), unlike the 10 to 15 year durability of the tissue version. Being very active, playing contact sports and working in an environment where the possibility of physical trauma was ever present, and after consulting my surgeon, I decided instead to have a tissue valve. This avoided me having to take Warfarin with its possible side effects and allowed my life to return to normal. The down side of tissue is that a redo would be necessary, and so here we are.
I hope that by sharing my experiences with you it might offer some reassurance at a difficult time.
All the best
Peter
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mcmaccy
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Hello Joanne.Yes, waiting was the worst bit for me, knowing that my condition was worsening as time went by.
I made a point of contacting my case nurse and surgeons secretary on a regular basis when I was worried or when a noticeable change in my symptoms occurred. It made me feel better and I felt it kept my case active.
Have you attended a consultation and pre assessment with your surgical team yet?
My surgeon has asked for a 2nd more detailed CT scan before he sees me and my urgent appointment for that still hasn't come through yet nearly 7 weeks in. I ring my valve nurse every week though.Feeling so low because I honestly can't see any light at the end of the tunnel and in the meantime I can't do any of the things that I love namely running.
Thanks.I'm sorry to hear things are dragging on. It is hard to remain calm and avoid stressing during the wait.I know exactly how you feel as I had to curtail, a bit at a time, all my activities: running, cycling, footy and pilates, until all I could do comfortably was walking on the flat.
But you need to preserve your heart as much as possible by not over working it. If you think things are getting life threatening then get yourself to A&E and you may well get emergency treatment - that's the advice I was given from my case nurse.
I'm having a replacement aortic valve too. I wanted a tattoo as part of my bucket list afterwards, but as I'll be on Warfarin because it's a mechanical valve that now can't happen.When are you due to see the surgeon?
Don’t know. Trying to push it even tho I don’t want surgery as symptoms are now bad. I can now permanently feel my heart in my chest and physical signs of AR such as pulsating neck, groin etc so it’s severe.
Afraid of surgery if I’m being honest. Got a family.
I could handle it better if I could sleep but I’ve got pulsatile tinnitus which is not helping matters.
I keep thinking the worst as well. Not good.
I’m 32 years old. Can’t believe this has happened to me.
I'm having weekly sessions with a Clinical Psychologist which has helped me get to this stage but I live alone and have to isolate Fron Wednesday and my mind will be on overdrive then. I hope that you get seen soon
I can imagine. I wish you all the best. If you ever want to talk on here then please just message me. Do you have any symptoms or heart palpitations or are you asymptomatic?
Thank you and likewise.I'm breathless if I walk at what was my normal pace and definitely can't run any more. Apart from that just really tired. I've asked so many times if they are sure that they haven't made a mistake with my diagnosis . They assure me that they haven't.
Yeah. I know how you feel. Other than knowing my heart is working harder because of the palpitations me some pain I wouldn’t be able to tell. I haven’t got breathlessness yet, but I suspect I will. The strong pulsating feeling in my body is there which I’ve repeatedly raise with cardiologist/doctors and they look at me like I’m insane.
Hello Peter just wanted to say think it’s wonderful you giving an informative look into your OHS although this has not affected myself I felt I had to say ‘well done’ and wish you a speedy recovery people need to hear other’s experiences I think until you hear about how other people react to these operations and especially there recovery your a bit in dark so it must be most welcome to read what you have been through good luck and take care 😊
I wish you a great recovery. What an honest review, nothing left out. Dr. Google is so damaging, some would prefer to believe it rather than the professionals. I do hope I never have to experience what you went through first hand, but I'm sure your account will help many. Take care. Moni
Thanks for your reply, and good health to you. Yes, its not the kind of experience one would have by choice. Even so good things have come out of it. I've learnt some useful things about myself and have become stronger for it.
Had my aerotic valve replaced at st barts in December i am recovering quite well , 72 years old, some pain when in hospital, i had terrible diarrhoea due to the laxative, and also had to have blood transfusion, because I became anaemic
Thank you Peter,Glad you are now recovering. I am having a mitral valve repair soon - hopefully this week but it's been cancelled last minute once already, so I'm not holding my breath until I am actually in a bed.
I'm under no illusion as to the 'discomfort' afterwards but wondered if the anaesthetic helped in forgetting it? Thank you for the info about the gas and air for the drain removal!
"For me and you this is a unique, mysterious and challenging experience to negotiate" - is exactly it. Not only are you having the surgery but you are worried about all the people waiting to see if you pull through!
Hopefully this time next week I can review my experience to help others to.
Thank you, it was good to read that this morning. My op is 2 weeks today aortic valve and aneurysm.
Feeling all that you mentioned but realise it’s out of my control and have to trust the surgical team. Made harder by the fact I currently have no symptoms. Trying to up the exercise and cut down on alcohol is certainly challenging me at present!
I’m 48 and have opted for the Resilia valve, feel fortunate to have that choice, have read some are unable to have it mainly due to postcode.
Did you have the Inspiris Resilia first time around and that wore out in ~10yrs ?
Yes, I had the Edwards Resilia first time, but over the intervening 9 years I think the new version has developed and now has improved longevity. There appears to be no hard and fast way of knowing how long the devices last. I guess it's dependent on a combination of many factors. I have a suspicion I wore mine out quite quickly because of my high activity life style - once recovered I just carried on as normal. I think I'll take things more steady this time!
I found it useful to accept and embrace all the feelings and emotions that came up around having the op, rather than fight against or deny them. Try to go with the flow.
You had gas and air for the drain tube removal? Oh how the other half lives No such luxury for me. All I got was 'take a deep breath'. In fairness though, it was over in about 2 seconds.
Yes, same here. When the nurse said "are you anxious about this?" I feared the worst. Then the other nurse said "grab hold of me". But then it wasn't that bad at all, I think you just get used to it all in the end!
Really helpful thanks. I just know I have MVP and will probably need surgery at some point (although who knows when!) so to hear from someone at the other side of TWO interventions is a great comfort. Many thanks ! 😬
Great review ! I had my AVR three months ago and very similar experience- very important to follow the staffs regime and support it get you going again !!! II’m now not only recovered but a very very much better version boy the difference !!!! Yesterday I was out locally and bounced up a flight of stairs where prior to surgery I could barely make the first 3 without gasping for air !!
It’s a fix this surgery it’s given me my life back with knobs . If you are facing the op - it’s a car crash but when they repair you - you go from old knackered ford popular to shiny new Ferrari!!!
Even though I only had a triple bypass, I can so relate to what you have written. I wasn't particularly worried about the surgery, more so about what it would be like being connected up when I came round. In hindsight, even this small worry was unnecessary. At every stage of my recovery, everything went extremely well. Even the removal of the drains did not phase me... gas and air is no use to me, for some reason it just doesn't work. Thankfully I do have a high pain threshold.
I totally agree with your comment on trying to be as fit as possible prior to the operation. It certainly stood me in good stead. Maintaining a positive attitude is also extremely important at all stages.
Thanks you mcmaccy for your insight, I have to have a CT scan in a few weeks to check my aorta size. It appears from echocardiogram to be 45mm (was 43mm two years ago). From what I understand when it gets to 55mm that I will need an op. This may be 10 years down the line at current rates (I'm 61) but as GWP1952 has said, its not the actual Op that frightens me, its the thought of coming round afterwards with the wires connected and in severe pain that bothers me more. (I've never had a serious operation before other than a stent fitted after a HA) I know it may never happen but is always at the back of my mind.
Thanks for your reply. I agree it can be a bit consuming worrying about impending surgery. I guess we just have to suck it up and thank our lucky stars we live in a time and place where we have this amazing medical care available to us.
Thank you for sharing your experience. My husband opted for a tissue valve six years ago (he was 41 at the time) however we weren’t aware of the Edwards Resilia valve at the time which I think we would have pushed for. Can I ask did you have another tissue valve on your second OHS, we are hoping that this option will be available when the replacement needs to be thought about? Many thanks
Yes I had the latest version of the Resilia this time. My surgeon recommended this with a view that if a further redo is needed, in 12 -15 years time, it may be appropriate to do this one using the TAVI method.All the best.
Thank you Peter for your encouragement, this kind of report is my main reason for being on the site. I am the same age as you are but my artificial valve will be 34 years old next month! It has given me absolutely no problems, and in all those years I have never had an issue with bleeding due to Warfarin - it is as safe as anything can be - I have over 30 years of normal activities to back this up. The whole experience was virtually painless for me. CoProxamol was an excellent pain killer (supposed to make you drowsy but in my case I was so alert people around me felt tired). I also was blessed to be operated on at the London Chest Hospital in Bethnal Green, which sadly has been closed for many years now You are right that getting yourself into the best possible shape certainly helps, I was fortunate that the valve was replaced before it gave me problems, but I went into the process thinking it as akin to taking my car in to the garage for replacement of a defective component. A key help for me also was (and is) my faith in God, without His reassurance I might have felt differently.
No two cases are the same, my advice to those waiting would be not to worry but to think of the op as something that will make your life better once completed and recovered. As for the life expectancy of a mechanical valve, the valve is basically like a tiny golf ball in a metal cage so there is not a lot that can go wrong.
Thanks for your reply.It sounds like having the mechanical valve was a good decision for you. I am aware that some people have a rough ride with the Warfarin.
Wishing you a speedy recovery. I would say though that people's experience of post operative pain can vary greatly and every case is different. My husband had emergency OHS for mitral and aortic valve replacement (with tissue valves) 18 months ago and required no more than paracetamol for pain relief afterwards.
My mum had a valve replacement when she was 45 which was 44years ago She had hardened arteries she was told so had to have a stainless steel valve they promised her ten years and she got over 49 years without any interventions
They do have better blood thinners these days not everyone had warfarin
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No such luxury for me. All I got was 'take a deep breath'. In fairness though, it was over in about 2 seconds.
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Waiting for open Heart surgery.
Open heart surgery recovery
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Third open heart surgery 
