Valve Regurgitation- symptoms & when ... - British Heart Fou...

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Valve Regurgitation- symptoms & when to operate?

ACWilk
ACWilk
28 Replies

Hi everyone,

I'm just looking for a bit of insight from anybody who has been diagnosed with Valve Regurgitation (mitral valve to be specific.) I was diagnosed with Severe mitral regurgitation 3 years ago. I see my consultant 6 monthly for check ups, and everything is going well.

I work full time and I'm also in the gym regularly and do a bit of fell walking. I seem to manage with little to no symptoms. Lately, I have been wondering if maybe I am just adjusting to the changes slowly, maybe I think the breathlessness I get when walking up a fell for example is normal for me when it actually isn't. Maybe I'm thinking into it all too much.

I see that a lot of people have symptoms when their valve is considered to be mild or moderately leaking.

So, I am just curious if anybody has a leaking valve with no symptoms? Are the symptoms a very gradual process to almost go unnoticed? Is it possible for my consultant to decide my heart valve needs replaced or repaired but I feel fine?

Thank you in advance.

A

28 Replies
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marypw

Hello A

My mitral valve has been at moderate/severe for about 2 years and I'm on 6 monthly review. When I see the registrar he's really keen to investigate and operate, whereas the consultant lets me go on a bit longer as long as I don't have symptoms.

I do have more palpitations than I used to, and I can get a bit breathless momentarily when I carry or lift things, but I should probably be fitter than I am.

The heart can compensate for a long time, but can get damaged, so many mitral valve surgeries get done while the patient is asymptomatic.

Half the time I want to put the surgery off as long as possible and the rest of the time I'd like to get it over and done with!

Best wishes.

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ACWilk
ACWilk
in reply to marypw

Hi Mary,

Thank you for your reply.

I know where you're coming from with wanting the surgery but not wanting it at the same time.

It's nice to know I'm not alone!

Best wishes.

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Midgeymoo17

I had no symptoms with my leaking valve.

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sims789

Hi, I believe it’s best to get it repaired before there is any damage to your heart. I have moderate/severe regurgitation and op booked for March next year. Surgeon said it’s good we’ve caught this early as i have a complex repair dueto a Barlow valve, plus a leaking Tricuspid valve (didn’t know about either until very recently) which will be repaired at the same time,. Very relieved I didn’t wait - I feel breathless on exertion but otherwise feel pretty fit.

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ACWilk
ACWilk
in reply to sims789

Hi Sims789,

Thank you for your reply.

The more research I do, I'm also starting to believe it is best to get it repaired.

I wish you well for your op in March.

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sims789
sims789
in reply to ACWilk

Thanks ACWilk. A TOE gives a much more detailed diagnosis and usually the next step after echo. Once my results were known, the cardiologist advised it was only going to deteriorate and referred me for surgery. After much research, I transferred to a surgeon of my choice. I wish you well and think you are wise to consider your options now.

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Celtic

I was diagnosed with a slightly leaky mitral valve some 15 years ago - no symptoms but found by accident when another condition was being diagnosed. Never checked since. A few weeks ago, I thought I’d strained myself squeezing awkwardly into the car in a narrow space and after a few days saw the GP as the pain was all around my chest making it painful to take in a deep breath and to sneeze or cough. She found my oxygen levels low, blood pressure dangerously high and sent me to hospital thinking blood clot. An echo revealed moderate to severe leaking mitral valve causing obstruction and pleural effusion. BP medication dose doubled and beta blocker, bisoprolol added. Saw 3 different cardiologists over four days and the last one did say the chest pain may not have been related. I was still convinced it was sprawled Ned ribs. Discharged and appointment received for repeat echo followed by appointment with cardiologist. Meanwhile been back to A&E as BP refuses to budge. Renal consultant wants me in kidney unit to try different medications to try and get BP down whilst monitoring my kidney function for adverse effects - I only have a sole kidney which is at 43% function at the moment, and have had nsty side effects from many BP meds in recent years. Just had a call from hospital tonight asking me to go in tomorrow! You’ve had some helpful replies ACWilk but I guess if you still need reassurance perhaps a second opinion from another cardiologist might be the answer? Good luck!

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ACWilk
ACWilk
in reply to Celtic

Hi Celtic,

Thank you for reply.

Interesting to read you had no symptoms and found by accident.

Perhaps a second opinion might be the answer, I will look into this.

Best wishes.

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BigT2013

Hi I had a very severe leaking Mitral valve and severe regurgitation. Was also a complex issue. I had no symptoms at all!! I walk 10-12 miles a day with my job.

Leaving the repair or replacement of the valve until u get symptoms puts u at risk of severe heart failure (even if you have no symptoms yet) . Which they cannot repair!! As soon as it was confirmed with me this time Last year I was classed as urgent. My valve has now been repaired along with a hole in my heart. Further test show I was very lucky and have very very little damage. I also took part in medical research at University hospital to establish best times to operate biopsies were taken of my heart muscles during surgery.

The findings may take time to get to all consultants.

The current thinking is supposed to be repair or replace BEFORE symptoms show. Gives the patient better prognosis, quicker recovery, better quality of life after surgery as less heart failure. Plus in long-term savings NHS money.

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ACWilk
ACWilk
in reply to BigT2013

Hi BigT2013,

Thank you for your reply.

That's very interesting regarding the research you took part in.

It does make sense to repair or replace before symptoms but it seems every consultant has a slightly different outlook on this.

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Nic2590
Nic2590
in reply to ACWilk

Hi, im 29 a bit like yourself i have been recently informed just through the week there that i have a leaking mirtal valve. I have a 2 year old girl and im due to get married october 2020. I really wish i was having a nitemaire and woke up to release this was all not real. I was told my valve is leaking servely and that likely surgery will be required to fix it. Nothing urgent i assume as i was discharged home after t.o.e procedure the consultant said they would discuss and set a plan. Can i ask where your at now with your treatment and how you dealt with this at 22? I don't know if to just get it fixed now at 29 or if to just keep getting it monitored. I guess the consultant will decide l. Im so nervous. Talking to someone else is with the same is what i need. Thanks, Nicole.

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ACWilk
ACWilk
in reply to Nic2590

Hi Nicole, thank you for your message. I'm sorry to hear that you have just been diagnosed with a leaking mitral valve. Have they told you what caused this, or do you have any symptoms?

I have had a severely leaking mitral valve for almost 5 years. I think about it a lot and sometimes ask myself 'why me?', but then I tell myself it could be a lot worse, I am healthy and happy and have a cardiologist keeping a close eye on me. Of course the thought of heart surgery is frightening, but I try to think of the positives. It has helped me massively by doing the research to understand the condition a bit more. I watched a video a while back 'Advances in Mitral Valve surgery' which answered questions I didn't know I had, this might help you?

I see my consultant again in December & I have an Echo to see if there has been any signs of damage or enlargening of the heart that would indicate surgery. It's difficult to know what the right thing to do is, so I can totally understand how you feel. It's easy to feel you're alone, but this forum helps a lot. Feel free to send me a message if you want to talk to someone!

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Nic2590
Nic2590
in reply to ACWilk

Thanks very much for reaponding and its great talking to you knowing your going through the samw thing. I had the transoesophageal echo following the normal echo. Initally i was told by the registrar after echo that the valve was mild leakage however when i went for the toe procedure i was told it was actually moderate/severe but difficult to tell as my anxiety was making my heart beat really fast which makes it hard for them to tell exactly how bad it is. I am healthy at the moment, i have no symptoms. The toe revealed that this valve leakage was not new and suggested i have had it since birth it was picked up by accident when i was previously ill. Has your consultant said you will definatly need surgery at some point? Do you have symtoms 5 years on?. Ive been told this by my gp i will likely need surgery but can't wait to talk about this with my cardiologist. I plan in getting married next year in cyprus we have spent thousands on it and now im so worried im not going to be able to make it. I keep thinking the worst all the time. The fact i have young family fills me with fear if anything happens to me. I will watch your attached video hopefully it will answer some questions. Xx

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Maltilda

Hi. I would advise you to get the operation sooner rather than later if you’re starting to experience some symptoms. I had severe mitral stenosis and it was very difficult. Walking, turning in bed, etc were so difficult and I was in heart failure for several months and then I became very ill and the surgery had to be done as an emergency. Take care of yourself and keep your consultant informed.

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ACWilk
ACWilk
in reply to Maltilda

Hi Maltilda,

I'm sorry to hear you had a difficult time with your symptoms. I hope you're doing well after your surgery.

Thanks for taking the time to reply.

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Lynnca

I had a leaky valve for years which I just chose to get on with. In latter years putting my feelings of tiredness, breathlessness when walking on an incline and not being able to lie flat in bed all down to age and stress. What I didn't realise was that the gradual deterioration of the valve was causing strain to the heart causing heart failure and AF, which I also continued to just tolerate. It was only when I visited the doctor after a cold when I thought that I had a chest infection that the problems were noticed and I was sent straight to hospital. surgeon said I was lucky I hadn't had a stroke. Shortly after I had the valve replaced and cant believe how much better I feel. Still left with a few problems as I just left it all too long, but hope that with time and hospital decisions on any more treatment things will get even better. Wish I had acted sooner.

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ACWilk
ACWilk
in reply to Lynnca

Hi Lynnca,

Thank you for your reply.

It's interesting that you wish you had acted sooner. I'm worried I might say the same one day. It's only been 3 years but I'm concerned the deterioration of the valve that could be happening without symptoms. I do get a 6 monthly echo, but is this enough?

I'm glad you are feeling better.

Thanks again for your reply.

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Kristin1812
Kristin1812Heart Star

It was my daughter who noticed I was more breathless on slopes. I hadn’t noticed, it was a gradual thing.

So, how about taking someone with you, who hasn’t walked up hills with you for a while. Get an objective opinion?

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ACWilk
ACWilk
in reply to Kristin1812

Hi Kristin1812,

That's a good point that you make.

I go fell walking with my partner and he is a lot fitter than me, with a great stamina - I suppose this makes me feel unfit to begin with!

Thanks for your reply.

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Frenchi

Hi , I had MV repair for severe MVR almost 3 years ago. I had MV prolapse at 38 years of age was discharged from Consultant so no check up for over 20 years. I suddenly became very ill due to Severe MVR and I was seen privately within 3 days. I was told I had a problem and needed to have tests to check what surgery was required. I was seen by the NHS and had my MV repaired. I was told I was diagnosed really quickly and had not got heart failure - however I was told I have an enlarged heart due to the damage caused by the above. I now have a normal life and I am back at work.

I would advise a simple blood test via your GP called Pro BNP this is an indication to any heart damage and also ask him to arrange an annual echo cardiogram this is arranged by a Cardiologist. You can also buy a PO 2 monitor to place on your finger and this will tell you your peripheral oxygen levels they are approx £20. Hope this helps.

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ACWilk
ACWilk
in reply to Frenchi

Hi Frenchi,

Thank you for your reply.

I will have a look into your suggestions, I have never considered that kind of blood test before.

It's good to hear you now live a normal life after having your MV repaired.

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Madfordance
Madfordance
in reply to ACWilk

Hi, I had mitral and tri valve repairs about 9yrs ago. The mitral was very severe and unfortunately was not 100 per cent successful but I have managed to avoid further surgery so far, although I do have numerous symptoms and medication does need to be changed a lot because of this. I had open heart surgery although I understand with medical advances sometimes possible now to have keyhole. If mine had been found and treated sooner maybe it would have been more successful as the damage might have been avoided. I wouldn't be here now if I hadn't had it and would say sooner the better.

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Fredders

I was diagnosed with a heart murmur when I was 15 purely by chance, I think I had a chest infection at the time. I was monitored yearly until the regurgitation got to the point where by aortic valve needed replacing. I had my first AVR done at the age of 52. Unfortunately the replacement valve also started leaking so I had a second AVR done last year. I had no symptoms either time even though the regurgitation was classified as severe. Both times my surgeon was keen to do the op before any damage was done to my heart. With the first op I also had my aortic root wrapped but the second time it was just the valve, although I did end up with a pacemaker as I got complete heart block.

I would say that if it has got to the point where they are talking about surgery, just get it over with. Much better to do it when you’re okay than have to have it done as an emergency.

Wendy

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ACWilk
ACWilk
in reply to Fredders

Hi Wendy,

Yes I agree with you, I feel in good health to go through something such as heart surgery.

My consultant doesn't initiate surgery very much, it is more a watch and wait process. Which I'm beginning to learn may cause more damage than good.

Thank you for taking the time to reply.

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Flowerpop

Hi I have moderate mitral valve regurgitation with a prolapse andxwss told to stop lifting heavy waits , not run long distance just excercuse modestly and not too over excert myself due to the valve splitting/breaking at any point . Also told not to dive or climb high mountains etc. My symptoms are tiredness and breathlessness when walking up hills and can't really excercise the way I want and just wished they repaired it. Just be careful if valve is severely leaking as it can cause heart enlargement and lead to heart failure I was told. I would ask Consultant when they are going to re pair or replace?

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Heartbeat77

Hi A,

Can I ask you what have you decided about the op? I’m in the same situation, not much symptoms but definitely I will need operation but just even to think about it it makes me ill and depressed. Can I also ask how old you are?

Thanks

M

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ACWilk
ACWilk
in reply to Heartbeat77

Hello,

Thanks for your message. It's nice to hear from people in the same boat!

I haven't made a decision yet. I am due to see my consultant in March for a follow up & also an Echo, so will see if anything has changed.

I understand where you are coming from, it gets me down when I think about going through such a big op! If I can, I really want to avoid having a mechanical valve as I don't want to be on warfarin for such a long time (I'm 24)

Ideally, I'm hoping they can repair the valve - but even then I've heard a few people say that the repair has failed in a short amount of time & they're having another op!

How long have you been waiting for an operation for?

A

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Heartbeat77

Thank you so much to reply me that quick.. I’m also very confused and I have moments when I think it’s just a nightmare and I will wake up soon... but unfortunately it’s real! I seen a consultant last September and he suggested me to do it as early as possible but in my shock I told him I need time to think about it... it’s very hard decision ,I’m thinking more about the tissue valve than mechanic though,however I don’t know how will I survive one op but two..?!

I’m 42 and was always very fit, the last few years I’ve started to feel changes but I thought..it’s my age, unfortunately not!

Which hospital are you going to?

Thanks

M

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