Valve replacement surgery

[Unde]

Hi 53 year old Male, went for an echocardiogram on Friday ,after it was done the technician told me that I would have to get valve replacement surgery. I was devastated and my heads been all over the place, crying, scared at whats gonna happen .Will have to see a cardiologist but don't know what to say, any information will be appreciated, regards Ed x

[MichaelJH Heart Star]

Hello and welcome to the forum! Did they say which valve? Valve repair/replacement is a common procedure these days. This link will give you some good background.

bhf.org.uk/informationsuppo...

Only use BHF and NHS websites as irrelevant rubbish on Dr Google

[Unde in reply to MichaelJH]

No she didn't just said it would need replaced, my head was all over the place , thanks for the reply will check out bhf..

[MichaelJH Heart Star in reply to Unde]

Remember Mick Jagger recently underwent successful valve surgery and you are young enough to be his son!

[Unde in reply to MichaelJH]

Haha made me laugh , thanks again..x

[Fredders]

Hi Ed, I had my first aortic valve replacement at 52. In some respects I was lucky, in that I knew from the age of 16 that I was likely to require an op at some point, but didn’t make it any less nerve wracking when that day arrived.

Make a note of any questions you want to ask your cardiologist and ideally have someone with you as it’s surprising how your mind goes blank.

If you look through the forum you will find lots of posts from those of us who have gone through aortic or mitral valve replacements, so there are a lot of us who can help. The posts will give you some idea of questions to ask, what you can do to prepare for the op and once you get home, what to expect over the weeks after the op etc.

Just know that you are not alone, we will help all we can to get you through this, so ask any questions you have.

Wendy

[Unde in reply to Fredders]

Wow thank you so much for your reply it makes me feel like I'm not alone with the replies I've had, will jot down notes to take with me thanks again Ed x

[Calliope153]

I am surprised the technician could tell you this. When my echo was done the technician could obviously see the problems but said that the cardiologist would tell me the results. I have a valve problem, an aneurysm and a couple of other things. When I saw the cardiologist he decided to control my conditions with medication and a "watch and wait" policy for ongoing care. You could waste an awful lot of time being miserable and fearful and then the cardiologist takes a different view. Yes I am afraid of what the future holds but I prefer to listen to the person (the cardiologist) who decides who gets what operation than the person who takes the pictures and won't have any more input into the decision making proces. You don;t have to know what to say - just ask what the echo showed and what is the care plan? Help yourself in the meantime by healthy eating and exercise. If you smoke stop immediately. As the others have said, there are plenty of people on this forum who are very generous with their knowledge and support and have been through all sorts of thing. You will find you are not as alone as you think. Take care Ed, you will be fine, it's just hard to believe when you have been so shocked.

[Unde in reply to Calliope153]

Amazing thank you, regarding the technician we all have said the same that she should've not mentioned as much have had a terrible weekend but coming onto this forum has eased my mind a little with all you fantastic people. I will get fit x Ed

[ITSINTHEBAG9 in reply to Calliope153]

Calliope... I couldn't agree more. I wouldn't have thought that was in the technician's remit to discuss test results on the day with the patient. I do know that if a really iffy result pops up on that screen they go and get a doctor straightaway. It's up to the Cardiologist what happens now as he/she is the one qualified to say. Best wishes to you

[sims789]

Hi, no you’re definitely not alone. There are lots of us pre-op and post-op on here and it’s been great support while I’m waiting for mine. I’m hoping for a mitral valve repair. While it’s a biggie for us, it’s common surgery for our surgeons 😊

[Unde in reply to sims789]

Thanks it was such a bomb shell on Friday but hearing from others it makes going forward a little easier x Ed

[sims789 in reply to Unde]

It must have been a shock. As someone here is mentioned it may well be a case of watch and wait. After my initial diagnosis of mitral valve prolapse, I continued with just medication for another 12 years until the regurgitation became more severe. Let us know how you get on

[Unde in reply to sims789]

It was a shock, I will be writing quite a lot on this forum to keep myself and others updated with my ongoing issues and the great support I've had already cheers Ed

[karoq2019]

HI Unde

I echo what most people have said and yes it is unusual for the technician to suggest the outcome. When you get to see your cardiologist, ask the questions and particularly why a replacement and not a repair. Yes it's upsetting to hear this news but on the positive side it's been identified an a early intervention is better that not knowing. Your cardiologist if he/she thinks it necessary may also refer you on to see a consultant surgeon, so you will have plenty of time to come to terms with the news and again ask the questions, no matter how obvious they appear to you.

Heart valve repair/replacement is very successful these days, so try not to worry. Good luck!

[Unde in reply to karoq2019]

Thank you for your helpful support and comments, I will be asking questions that you have said , thanks again Ed

[marypw]

I am really shocked that a technician would give you news like that and as I know it's pretty bad to get it from a doctor.

Do bear in mind that transthoracic echos give a reasonable picture but they're not definitive and depend on the skill of the technician. I've had a technician tell me mine was ok and then the doctor said it wasn't! I've had 3 more since which still show moderate mitral regurgitation.

A cardiologist will give you a full exam and query all your symptoms and have a proper discussion with you. Do keep chasing up your appointment - I hope it's soon! It might also be worth seeing a sympathetic GP who can calm your nerves somewhat. Best wishes.

[Unde]

Thank you for your lovely comments, I hope it's not to long before I see a cardiologist to let me what really is happening regards Ed

[MichaelJH Heart Star]

When I had my echocardiogram I was told everything was fine and that the problem was purely CVD. Whilst with the CT scan no comment was made the technician carrying out the echo was actually a cardiologist. Could this have been the case with your echo?

[ITSINTHEBAG9]

Ed. You wait for the Cardiologist.. I know for FACT that you would not have been let out of that hospital had a really iffy result been returned. When I went for my first echo my radiologist told me he's had people admitted from his room to a ward. They let you walk out that hospital. I've got moderate/severe aortic valve stenosis. I'll put you on my follow list.. Best wishes to you x

[Unde in reply to ITSINTHEBAG9]

Thank you so much for your advice, I will wait and till I speak to the cardiologist, but trying to get rid of these negative thoughts is getting me down, but with the help of all the lovely comments people leave will help me thru this .Thanks again x

[Flteng in reply to ITSINTHEBAG9]

That’s what happened to me. I’ve had annual echo checks for the past 7-8yrs ( I’m 85 ) i went for my annual check on 17th September 2020 delayed from. April. Immediately after the nurse called a doctor who admitted Me to hospital (Bournemouth) I was there for over 2 weeks having every check possible. final decision was that I would need a replacement aortic valve, tricuspid repair & a triple bypass. This was carried out in Southampton. Still recovering

[Scratchfire]

Hi, I was devastated too when I first got the news I needed valve surgery.

All I can say is that 12 weeks after my op I really do feel so much better.

I'm a 47 year old firefighter and I thought my career was over. I'm now back at work and feeling great.

I know it's difficult but try and stay positive. There is light at the end of the sometimes, very dark tunnel.

[Unde in reply to Scratchfire]

Thank you for your message, will find out from the cardiologist hopefully soon , but being in limbo is a bit daunting. Glad your feeling much better and back at work Thanks again, cheers Ed

[Dickydon]

Don’t be scared, obviously a natural reactionary process for us over 50’s. I’m 58 today the 8th, I was told in Feb that I have a moderate/severe leaky Aortic Valve and would need replacing. But Dr who did the deep scan said he’ll do another scan in six months and take it from there. I believe I’ve had this leaky valve for years but now it’s starting to have signs of needing attention. These procedures are being done everyday in hospitals and it’s one in do the job and the next one scenario. Believe Mick Jagger had a valve replacement last week.

August last year I had a Pacemaker fitted to correct a very low heart rate and in the June I had a heart attack.

I’m also a type1 insulin dependant diabetic had it for 43yrs and a whole host of other issues but I still manage to do my physically demanding job as a TV Sports Cameraman, but don’t over do it nowadays. I get extremely tired these days and take the meds I’ve been given to take.

So rest assured, you’ll be in good hands and try and get on with your normal everyday stuff all will be well.

[Unde in reply to Dickydon]

Thanks for your message, I hope I hear from the cardiologist soon so I can move forward. Was at my work today which helps taking your mind of things. Happy Birthday for today and thanks again for your message cheers Ed

[Dickydon in reply to Unde]

Thank you and good luck

[Avarae]

My brother had quadruple bypass 20 yrs ago and he's never looked back.he said was best thing ever and he's fit and doing great .he's looking after 3 kids on his own and works...u will be fine.i was worried I'd need it too but I ended up with stent.

[Unde in reply to Avarae]

Thanks for your message it means a lot, sounds like your brother is doing a great job Cheers Ed

[Leannevgil]

My husband had his Aortic valve replaced 7 years ago - he was 47. We were terrified but we just took it one day at a time... now we look back at how lucky he was to have had the operation! If you have any questions just ask! 😉

[Unde in reply to Leannevgil]

Thanks for your lovely message, my wife also is very worried but hopefully when she reads your message she to will see some positivity in it. Thanks again and I will ask questions Cheers Ed

[Hedgehoglady07]

Hi welcome to the forum. I have an aortic leak post endocarditis. I have had a few echocardiograms now and I am surprised that the technician told you this. Just because you have a leak doesn't mean you need surgery just yet. I have a mild leak and it could be many years before I need surgery. I am not surprised you feel so upset about it. I would contact your GP they may be able to see the report already. Hopefully you get some information back which will ease your mind. Don't Google BHF have a really good booklet to down load. I have rang and spoke to one of the Cardiac Nurses in the past they are great.

[Unde in reply to Hedgehoglady07]

Thanks for your message it has been helpful, hopefully it won't be too long till I see the cardiologist which will help me move forward knowing what's going on. I will download the booklet. Thanks again Cheers Ed

[bantam12]

I had an echo last week and the technician told me more in that 30 mins than my Cardiologists ever have, she went through the pics and explained what was happening, she told me I have a mitral leak which I didn't know about, I was disappointed when my appt came to an end as I could have chatted with her for way longer. I'm very glad that I know what the echo showed as I'm now armed with that info when I next see my Consultant.

In comparison the echo I had last year at a different hospital was so quick and the tech said nothing other than everything normal, not at all helpful !

[Unde in reply to bantam12]

Thank you for your message, I was just shocked when the technician told me, and having all weekend with this news going round my head. But back at work today which helps take my mind of things, hopefully I will see a cardiologist soon. Thanks again Cheers Ed

[bantam12 in reply to Unde]

I hope your appt goes well, try not to worry as at least the problem has been found and can be sorted.

[Unde in reply to bantam12]

Thanks again these messages really do help me Cheers Ed

[OttoK]

Hi, it depends a bit on which valve. It’s a serious op, but low risk, and in a sense routine. I just had mine. I had to have a double bypass at the same time. They tend to fix everything they find while they are at it, so they only need to “invade” once. You may have to be on waufrin all your life, if you make a metal valve. There is the TAVI option which is less invasive and does not require waufrin, but is less proven. Trouble is that may mean they may to go in again in say ten years.

The trick with the psychology is to realise that it’s normal. I have a trio: fear, anger, sadness. The point is simply to acknowledge which you are feeling. I am 10 days after the op, and already feel a bit better. But it will be 2-3 months before I feel really better.

The op itself: they give you nice pre-ops but then you wake up into a sort of boot camp where you must do as you are told: basically cough to help get rid of fluids and walk to get the system going. Simple advice: take the pain killers and do as you are told. At this point self pity is a no no and avoid the winger in the next bed. I am a 74 year old cynical old bastard, with a streak of rebellion, and a sharp tongue, hard to keep my head down.

Hang in there and courage mon brave.

Otto

[Fitandfearless in reply to OttoK]

Brilliant reply there OttoK. I have exactly the same mindset as you. Take the meds, accept the surgeons do this all the time, get fit and get over it. The great thing about surgery is you sleep right through the whole thing. I've had my artificial valve for 30 years and recently took up weight training - would highly recommend both as life-changing experiences. We need to speak up for positive experiences to help others from being paralysed by fear and anxiety.

[Unde]

Brilliant message sir, hope your doing well I hope to see a cardiologist soon which will help with me moving forward, hopefully the winnger in the next but is not to irritating. You've made me laugh with your comments at the end of your message, never change be who you are, thanks again Cheers Ed

[Spanishwoman49]

I am also waiting for a replacement aortic valve, but in the meantime I have been diagnosed with breast cancer, for the second time, i had a mastectomy 38 years ago. so a double whammy...it will be interesting to see what they sort out first.

[Unde in reply to Spanishwoman49]

Thank you for your message, Hopefully they sort out both of your problems at the same time. Wishing you a speedy recovery Cheers Ed x

[Liam47]

Hi,

Like other good posters have said, I’m surprised the technician told you this. In my opinion and I don’t think they have, they are not a professional that has done 5 years or more in medical school and definitely not a cardiologist or surgeon, so the technician is not qualified enough to give out diagnosis's. They are qualified enough to use the scanners. Who referred you to have an echocardiogram in the first place.? I’m presuming it was your GP that referred you. The technician maybe wrong and your valve could be repairable, like my aortic valve was repaired when my heart surgeon replaced my aortic root. He thought he would of had to replace the valve. The surgeon and I discussed the type of valve he was going to use, which would of been a mechanical valve.

Heart surgery is scary surgery and extremely serious, but my advice to you is to arm yourself with as much knowledge about it. Google can be a bad thing at times, but used in the right way, can give you so much information on heart surgery. I used it so much, when was told I needed heart surgery. I even used it to look up patient experiences on heart surgery, even watched surgery videos on YouTube about the surgery I was going to have. Don’t be frightened to flood yourself with info, it does help you to cope with it, to understand what to expect, so nothing is a shock to you.

I hope this helps you as you are not alone.

All the best.

Liam.

[Unde in reply to Liam47]

Hi Liam, thanks for your message . When i got knocked off my motorbike in February the doctor at the hospital when he was checking me over said "do you know you have a heart murmur " which I never new I had so my doctor made the appointment for the echocardiogram. This has been a bit of a shock . Yes I am flooding myself with all about heart surgery which I think helps me going forward, and also hopefully get to see a cardiologist soon. Thanks again Cheers Ed

[Gnasher2]

Hi Ed my name is John I am 52 years old and welcome to the site ..first thing to think about is that it is an operation they have had plenty of practice with now.

I have just had my mytral valve replaced the operation was carried out on the 18th January so I am a fairly new member of the club .....I was going to write I know how you feel but that would be untrue I can only tell you what was going through my mind as regards this situation.

I won't deny I was scared at the prospect of what was going to happen and at first my head was all over the place and questions and thoughts were rushing around my head .

It took me at least a week to confirm that I was going to go through with it and realise the positive benefits it would bring ......before my operation I could hardly walk any distance without being short of breath and my heart to start pounding and have to ask who I was with to stop so as I could catch my breath so it was pretty debilitating however now after it I can walk a fair distance which will improve on time as I fully recover (it can take 2-6 months to recover fully)the important part though is I no longer get breathless and my heart is not racing trying to go into overdrive every one has mentioned about how my colour has improved (I can only put this down to vastly improved blood flow) so I can definitely confirm it has improved my situation and I no longer get breathless another effect is that I used to hbb acerbic repetitive cough which has gone completely (To my stepdaughter delight lol) .

In short I feel a lot better but I am still recovering.

I can understand your fear and apprehension as I had it all as well and I will not sugar coat it.

It is a major operation and i can only say that your body will feel like it has been hit with a bus but you do get better slowly at first but gradually you improve every day I was like bambi on my feet immediately after it and could barely walk however the physio and the nursing staff will get you back on your feet your chest will be sore but that will go away and don't be afraid to ask for painkillers (strong ones) sneezing and coughing arena bitch but they will teach you a good trick with a pillow the anaesthetic might knock you sideways for a while but your faculties do come back (I suffered from delirium for a good while and was that bad I could not remember my name or what year I was born or where I lived ) but it all does come back to you .

Don't be afraid to ask your surgery team about anything and if they are like the team I had they were very approachable and open to any questions ) the aftercare I received was amazing and I can only thank all the NHS team with all my heart.

The nurses that work in the high dependency unit and intensive care units are a breed apart as the anaesthetic can alter your personality a bit and I went from a nice normal easy going guy to a deranged version of father Jack lol but all the nursing staff were understanding and professional.

You will have to have a catheter in which is not pleasant but it is necessary and believe me the joy you get when you get it out is great.

All I can say in conclusion is that getting the operation done and having the valve replaced has certainly improved my health and my fitness...my next step is the physiotherapy and the healthy heart classes and as I have never been a gym bunny this will kill !hope me lol.

Anyway best of luck mate and it is natural to be apprehensive but everything will be fine e and you have loads of support on here and around you.l

I hope this helps and remember if I can see this through so can you as I am a big big scardey cat.

John

[Unde]

Hi John, thank you for your very helpful message, these are the questions I will be asking when I get to see the cardiologist. Wow not looking forward to being like father Jack Haha, hope your doing well and to know someone is a scaredy cat too . Thanks again Cheers Ed

[cabbagex4]

Unde

I have had similar experience as yourself. 2 1/2 weeks ago after a echo test they refused to let me leave hospital citing 95% blocked arteries. Surgery was scheduled on the spot for 2 days later. After all the fear, research and drama, a quadruple bypass was successfully performed. I’m home recovering now.

I wouldn’t suggest people seek out an unneeded bypass op but I have never felt better in many respects. Sure I’m weakened and healing w/some pain but psychologically I feel calm and directed and feel like I will (try to)live the rest of my life(I’m 59) with gratitude. Something came over me in hospital that I hope never to lose. I’m not religious so Maybe I just needed to calm the f**k down a bit but I think there’s more to it. Here's to living in (my)world of greater empathy and understanding.

[Unde]

Hi, thanks for your message, it was a bit of a shock but as the week goes on I'm feeling a little less anxious by the lovely messages people have sent. Hope you are recovering well and in not to much pain, and yes I do believe we took things for granted but didn't appreciate the smaller things in life. Thanks again Cheers Ed

[Glasgowgirl1947]

I was referred to a cardiologist after a wonderful lung specialist spotted a valve problem and referred me. It took a while to see the consultant and 7 months to get my operation. When I got to theatre it was discovered my potassium levels were very low and my Co2 was VERY high, the consultant anaesthetist couldn't be sure he could waken me after a 6 hour operation but they did so a TOA which showed I needed 2 valves sorted out. I was kept in hospital and given potassium drinks 3 times a day for a week. I was very lucky to have a port repair op (keyhole) I had a few problems with the rhythm of my heart but it sorted itself out. Please don't worry about your operation, just think about how good you will feel once your recovered. It might take 6 months but it's worth it. You will be well looked after and will get a lot of support from Cardiac rehabilitation etc. Hope you can put your mind at rest. Good luck I must admit I'm surprised that the radiographer told you the results, she can't know what the cardiologist will decide.

[Unde in reply to Glasgowgirl1947]

Thank you for your lovely message, hope you are feeling better yourself. As you say I will have to wait until I can see a cardiologist to know the results. All of the messages are definitely helping putting my my mind at ease. Thanks again and hope your recovery is going well Cheers Ed x

[Couldbeworse]

Relax... a 55 y old i work with had this done 10 years ago and is due a replacement this year. He said worst bit is the recovery as they split your sternum to get at you. 3 days of feeling awful and thats u on ur way back up. This guy does hill walking and swimming so it dies not impact him at all. Keep your heart up... all will be well.

[Unde]

Thanks for your message, it means a lot that people are replying which definitely does help. Hope your work colleague is doing well, thanks again Cheers Ed

[Nic25]

Hey Unde. I see you've had lots of great and hopefully helpful replies already so I'll keep this brief. I'm 50 and had an AVR in December and, for me, the emotional/mental build-up - the terror basically - was almost worse than the operation itself. It is a big operation, but also a really straightforward one for the surgeons these days. I'm personally feeling loads better than I was pre-op (although even then I didn't feel "bad") and am doing cardiac rehab, swimming, walking a couple of miles a day etc. Yes suddenly being faced with something like this is a shock and scary but the main thing to remember is they do these ops all the time, every day. I know this probably won't help you to feel any less scared - and I was terrified - but I hope it helps. Good luck. Sure you'll be in great hands. Keep us posted how you're doing and feeling. Nic x

[Unde in reply to Nic25]

Thank you Nic for your lovely message, the messages really do help me. It was a shock at first with my head all over the place but gradually coming to terms with it . Once I see the cardiologist I hope it will help with me moving forward. Hope your feeling well and thanks again for your message Cheers Ed x