British Heart Foundation
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Newbie and scared

Hi im new here.

Diagnosed with Mitral valve prolapse in 2013. With regurgitation.

Asymptomatic so no symptoms at all.

Recently called into hospital which is out of the ordinary, seemingly consultant seems to be rushing me through blood tests another echo then a chest CT. Then a T.O.E scan (transoesophageal echo). the worse thing I have ever had done.

The lead consultant says guidelines have now changed in the UK rather than leave me symptom free until issues occur they want to operate to repair the issue NOW.

Im now really scared im going to have to have open heart surgery in the very near future even though I have no health issues!!!!

Any advice or with similar stories appreciated

Big T

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Hi Big T

I can empathise with how scared you are feeling. I have been through all the tests that you mention and am having open heart surgery at the end of the month. As I have five procedures to be performed I can’t have minimally invasive surgery.

You don’t mention what you need to have repaired but you might well be a prime candidate for minimally invasive surgery. My advice would be to glean as much information as you can and write down all questions you would like to ask your cardiologist.

I’m sure you will receive other replies and advice from friends on this marvellous forum. Whatever surgery you are facing, you will find support here. We’re all in the same boat so understand your rollercoaster of emotions.

All the best,

Dory xxx❤️💕❣️

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Sorry just noticed you mentioned mitral valve regurgitation, at first it was thought that was all I needed to have repaired and as such minimally invasive surgery was suggested. Alas after 2 TOE tests more procedures are needed.

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Hi Big T, I have a very similar story. My mitral valve gradually got worse over 10 years then last October, at 49 and reasonably fit, was told I needed to have open heart surgery to replace or repair it. I thought I had no symptoms but looking back I did. I was horrified and who wouldn't be! Anyway, I had a long wait for what I was told was urgent surgery and now I'm coming up to 6 weeks post op. It's been tough as I had a few post op complications which were just bad luck but I'm beginning to feel better. There's no point fighting it, I just resigned myself to the fact that I was been given a chance to live a longer life. I've had to dig deep for many reasons but you can do this. Some of the procedures are unpleasant but you'll get through it and come out the other side feeling better in the long term.

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Hi Big T,

It's a very scary thought having open heart surgery especially when you are not expecting it and dont feel too ill.

I have just had my mitral valve replaced aged 45.

I would totally recommend it as its worse letting your valve and heart get sicker..mine was very rushed this year after 2 years of them undecided because i am younger.

I have not looked back 7 weeks post op.

It hurts,but you have pain relief,staff really are amazing..you wont look back.

I am here for any worry or concerns you have..please dont feel alone

Take care

Jenny x

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Hi Dazzler

I'm a little older than u they think I was born this way but never picked up before only picked up by accident In 2013

after bump on head and visit to hospital.

I'm confused have just been monitoring me then all this rush in a few months!!

My job even involves walking and lots of it some weeks I may be walking close to 100 miles on all sorts of terrain .

With no issues no struggling, no breathlessness, no chest pains nothing.

In fact keeping up with lads half my age.

It's knocked me for six and gobsmacked they are talking about surgery.

I'm scared

I'm worried

Don't want to die.

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Understand your fear. Is it possible to speak to consultant again now you've had a chance to absorb what he said? I have a different condition from you and was asked to consider transplant a few years back. I was equally shocked, feeling like I wasn't anywhere ill enough for that sort of procedure. I ended up not pursuing that option, but I know now that it might be on my cards in the future and, if it is, I know they will want to do it while I'm still reasonably well, if possible. I'm not loving the situation, but I am OK with it.

Damage to the heart is so hard to rectify, so it makes sense to act before too much damage has occurred. Plus surgery is hard to recover from if your heart is not fully functional. Have they said anything about how they expect your condition to "develop" in the future? If surgery now will prevent symptoms in the future, maybe you'd want to pursue. At the moment, your main feelings are probably shock and fear, but you need to make an informed decision. I would set aside some time to really think through all your questions and concerns, write them down, get answers from your consultant and make your decision based on them.

All the best to you, whatever you decide x

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Hello Big T,

Aww please dont think the worst.

Its great you are so well now,a real plus point if surgery is needed and for recovery.

I was told that they do surgery if needed and monitored if not?

Maybe have a good chat with your consultant and their team to reassure you and ask some more questions,its such a shock..i was shocked this year when i was told after a T O E i needed surgery quickly as mine progressed quick since my diagnosis nearly 3 years ago.

I still say i have not looked back since surgery.honestly.

I am thinking of you

Jenny x

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Hello Big T,

Just browsing the Forum and came across your post - If I could reach through and give you a Big Hug then I would my friend, I can't really appreciate how your are feeling about your upcoming surgery as so far surgery for me is not on the cards, but feeling frightened, scared, and isolated I do know about. When I found this wonderful forum I was able to take a breath of relief - so many friendly and knowledgeable people here, and so much support.

Your surgery is going to give you a new lease on life, a stronger heart and years of new memories just waiting to be made. I am thinking of you and so are the many others that make up this wonderful Forum - hang on in there - look to the future and stay positive my Friend - not easy I know but it will so be worth it.

Babs x

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Praying

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Praying 🙏 too hope I don't need surgery.

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Hi Big T , I know how you feel I really do only Iv have had symptoms for years and my aortic stenosis had gone undiagnosed for so long it's now unrepairable and so means a replacement valve! So it really is better to get things sorted before symptoms start. I know the thought of the surgery is scary, I'm terrified but it's all for the best. I wish you all the luck stay strong x

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Hi Big T

Having read your story, as many have said we are all here to support. I had two heart attacks and then repair to mitral valve due to regurgitation, that failed after four months and was then told I would need a replacement ASAP. I was still in shock and said no as I felt not mentally or physically ready to go through it so soon again. I had a review at Harefield and my medication was changed and I was put on a new drug. That was 3 years ago soon to be 4 years in January. I have had a couple relapses and I know the next time Surgery will be rediscussed. Speak to your cardiologist and write down your questions. It is better to be as fit as possible, but there may be alternatives, importantly is you, listen to your body and the advice you are given but it is vital you have the understanding for your surgery being pushed. Stay strong

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Hi Big T

Same thing happen to me,

I didn’t recognise any symptoms just thought I was a little unfit, worked in the morning and at 5pm was being told I wasn’t going home, I had the loudest heart murmur they had ever heard and would have to have open heart surgery ASAP. stayed in hospital for 2wks having tests then sent too Southampton for Aortic Value Replacement. That was 12weeks ago this Thursday.

I still can’t believe this happened to me that I faced every fear and emotion those 3 wks in hospital. Open heart surgery is a big deal I know this is easy for me to say now it’s all over, but it’s not as fearful as you imagine, the recovery is a long and sometimes bumpy road but there are many of us on here that have come out the other side still smiling just lol

You will be ok we have amazing hospital, some of the best heart surgeons in the world

Take care ❤️💕

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👋 hello Kazsumm

Thing that's knocked me for six is I have a murmur a loud one.

It's my Mitral valve

But I do have No symptoms.

The Doctors know I have no symptoms the say I may have been born like this and I'm now 53.

My job involves very physical work and I probably walk close to 100 miles a week and keep up with lads half my age.!!!

So being told they want to operate is complete shock..

Open heart surgery is a massive thing.

I don't want to die

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I was also born with this heart defect that gave me no inkling

I had anything wrong with me, over the years I too have done physical jobs, this year I moved houses and in February I had my 1st operation ever on my Achilles and no one picked the murmur up this is a mystery how it was missed. 5days before my 57th birthday my ❣ decided it’s had enough 😂

I see this as being lucky,I didn’t have a heart attack or worse die, I’ve had the best MOT ever and know that apart from my value and aorta I was very healthy . Also for the rest of my life I will be monitored and I plan to be around for quite a while yet. I had the best 7hrs sleep during my op, the best aftercare from our wonderful NHS. You will be knocked for 6 7 8 9 and 10

But you will survive, and those half your age will have too catch up with you, because you will be way out in front.

Knowledge is power, the more you find out about what’s going to happen the more in control of your fears you become. Just don’t watch any op on you tube 😂 The folk on here are very helpful, just ask them .

So take care Kaz ❤️💕

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Thanks for advice.

I am completely free of symptoms I have no trouble lying down or cough no breathless Ness nothing at all and like told others I do very physical job and walk close to 100 miles a week no issues.

By the way. Birmingham England

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BigT2013 Just like to add that I am in a similar position to you. I am asymptomatic and have a prolapsed mitral valve together with a bicuspid aortic valve. Both valves have severe leaks, and I have just finished all investigations.

I totally understand how you feel - having no symptoms and having to elect for open heart surgery is very scary and stressful. I am based in the Midlands and following on from the reply from @Advice1, if you consider The Royal Wolverhampton, then Mr Billing is the mitral valve expert (https://scts.org/consultant/john-billing/?outcomes=all) with approximately 250 isolated mitral valve procedures in 3 year period. I have met with Mr Billing on three occasions this year, and he has been understanding and patient with me throughout.

Feel free to message me with other questions etc.

Marco

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