Back to being scared - AVR: Ive been on... - British Heart Fou...

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Back to being scared - AVR

Ive been on here for about a year since being discovered as having aortic stenosis. I have always had a heart murmur but it was never monitored. I am now 60 and my Mum is 88 wit a heart murmur so I thought all would be okay.

However over the last 2 or 3 years Ive had a few weird symptoms which were disregarded a bit until I had an echocardiogram last November. It was discovered I had severe aortic stenosis. I was referred immediately to Kings and they ran some more tests. It was decided after a TOE or TEE that my figures had been done incorrectly and Im moderate/severe. I was put on watch and wait until next March.

Because I don't really have any symptoms now other than a bit of breathlessness, I truly wouldn't pursue anything because I feel so well. Obviously I am very grateful that this has been found when it has and I am a bit daunted by it still.

Classic symptoms of severe aortic stenosis are breathlessness and inability to lay down etc. Lack of energy etc etc and pain, dizziness. For some reason these are gone - I walked around Bruge on Friday for 6 hours and it was a long day.

Apparently this cannot improve but it does make me wonder sometimes.

However brave I feel, when it gets to night time, like now at 1.30am, Im really scared. Am I overdoing it? My surgeon says I can still fly/travel and Im planning on going to the US in January. I know Im not perfect and I am being careful but it really is a huge black cloud that I don't properly understand.

Can some of you tell me how you were with this? Is the moderate/severe likely to last a long time before I need surgery? is there any way it could become very severe before March?

The valve size last November was 0.5cm but in June it was 1.1cm. As I said Ive improved but thats meant to be impossible and I think people assume the first reading was a mistake.

Last but not least, has anyone else had their surgery at Kings? I don't seem to come across anyone who has.

p.s In the last couple of weeks Ive been allowed to start taking hrt and that has made me feel even better.

Many thanks in advance

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Hi my hubby just had surgery at kings and saved his life .he had thoracic aortic dissection. All I will say is you have so many questions. Write them down .make a private appt with consultant there and talk it all through.i know you will have to pay but worth it.

Once you've been operated on obvious you see consultant for follow ups but you don't want to get that far if you can help it .good luck but get your mind put at ease

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Hi Numberone1

My murmur was found by mistake in 2016 I was diagnosed with Aortic Stenosis Mild to Moderate then given an annual review in October 2017 this was now Moderate to Severe so they wanted to review it again in April/May 2018 .I had an Angiogram and it was now Severe and required surgery. I was told I had been born with a Bicupsid Aorta which do calcify over your lifetime I fortunately got to the age of 61 before I needed Surgery . Someone in the nex5 bed to me with exactly the same issue was only 32 I researched it to the enth degree and decided I wanted a particular surgeon at St Thomas’s in London to do the operation even though I live in Yorkshire. By the way I had no symptoms whatsoever apart from slight breathlessness on extremely steep hills other than that life was normal. So yes things can change from Moderate to Severe up to Severe in a matter of months.

I was told I could wait a few months but the earlier you get it done while you still have your fitness and don’t start with other problems the quicker and better your recovery is . After seeing the surgeon in July I elected to go for it and had my AVR replaced which happened 5.9.18. I’m now almost 13 weeks post op and life is back to normal other than the medication you have to take. I’ve just come back from a short break to Tenerife for me it was really a test of flying and having the confidence to leave the country and it was fantastic. It’s all about setting little goals and targets post op without trying to overdo it initially.

What ever happens your going to be fine just prepare yourself for the words at some stage Severe Aortic Stenosis and when you do you know it’s time for surgery. Untill then live your life as normal but do some research as well so you understand what the doctors are talking about and you can make an informed decision when it’s right for you

Good luck if you ever need any help or questions answering you can contact me on the chat button and I’ll help as much as I can

Pete x

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Hello Numberone1,

I was diagnosed with severe stenosis back in June and had my valve replaced in October. I had no real symptoms that I was aware of and only found out about it due to an insurance medical. My doctor wanted my murmur checked with an echo. I don't think you always get the symptoms. I was really quite fit and active so it came as a shock to me. However I kept cycling and being active right up until the October operation. I should have perhaps been a bit more careful as I also needed a piece of my ascending aorta replaced which was bulging. I think if you're being monitored and feel okay and they think it's okay then not to worry.

I'm now almost 8 weeks post AVR and working on getting my fitness back. Second cardio rehab session today - they really take good care of you.

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Hey Numberone1. I can only talk from my own experience but sitting here in my hospital bed at St Thomas's following AVR last and due hopefully be heading home tomorrow I already realise how much breathlessness I had but hadn't noticed as it creeps up on you so slowly. I've been lucky as my op has gone about as smoothly as it possibly could (I'm just day four post op today) and for others it is less straightforward. But if needs to be done, it needs to be done - and these days is a very standard operation. I've no idea about Kings specifically but most of the big London teaching hospitals (of which Kings is one) are centres of excellence in this stuff. I certainly cannot fault G&ST. In many respects the hardest part is the long dark nights of the soul as you're waiting fearing the worst. But as I say it is a very standard op these days - even though no amount of others telling you beforehand will help! I was "severe" stenosis for quite a few years btw and travelled extensively around Europe. It got worse very gradually over time and so I went from annual to six monthly checks before the move to surgery was decided. I also had an ascending aneurysm which needed monitoring. But of course severity, symptoms and speed at which these things progress is likely to vary for everyone. Hope that helps at least a bit! Nic

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Thank you for this Nic25. I personally feel I could go on forever at Moderate/Severe but then I read that when you reach severe, you have a 50/50 chance of survival. I sometimes wonder whether my Mum has been like you. She's very out of breath now at 88 but won't go anywhere. Mine was found quite by chance. Ive asked her to seek an echo incase that will show she has a bicuspid valve and Ive inherited it but she wont go anywhere even though Im asking her for me.....that tells you how supportive my Parents are. They have always caused me much pain over my lifetime. I actually say they "broke my heart". Ridiculous I know but if there's any truth in it, then its happened to me. I refuse to be a victim though. Bit dramatic eh, take no notice.

Id love to know where mine has come from for the sake of my Daughters; my youngest daughter also has a heart murmur.

Anyway enough of me. Im so encouraged by your message. Im sure I'll be fine at Kings I guess. I assume the fact that yours has been severe for years, might be why you have the aneurysm problem? I don't think I have that or at least nobody told me. My Grandfather died of it though so again, I wonder about inerited heart problems that has come down my Mums line.

I own a property in Vermont, N.America and I travel alot otherwise. I would hate to not be able to do that.

Keep in touch with your progress. I am sure you'll be fine and I feel encouraged. Thank you again.

Susan

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You have been diagnosed and are being followed up at a good hospital, which will replace your valve when it's necessary. Try not to catastrophize it and let it dominate your thoughts. I was diagnosed with a bicuspid valve with moderate stenosis and told I would need surgery in the future about 12 years before my replacement ( which happened at 61) and to be honest I just accepted it, which made life a lot easier - if there is one theme that runs through posts here it is that the fear of the operation is much worse than the operation itself. Trust your doctors.

Your daughter's murmur should be evaluated, but I can't see how your mother's refusal to go to the doctor affects you.

Enjoy the US!

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