I was born with mitral valve prolapse and my mum was told that it shouldn't cause any issues maybe later when I'm old.
Now, in the past 4 years I had two daughters, and even after my first on my yearly checkup they said my condition is mild/moderate. Then last year it was moderate and yesterday been told it is between moderate and severe. The cardiologist started to talk about an operation that it might come to that later but we need to time it right as if I have it too soon (I'm only 40) then might need another later when I'm old...
He also said to keep exercising (I exercise every day). He really scared me talking about a valve operation and I don't understand how the comdition can go from mild to nearly severe in 4 years? Does that mean next year it will be severe? 😢 I feel so so sad, I never thought it would come to this, maybe when I'm 80 but soon? 😢 Has anyone had this condition and has experience in worsening condition?
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Klau80
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Forgot to add, I thought not severe vavle issues can be sorted with drugs...my doctor always said I I couldn't get drugs my option would be only operation. Why?
I've had a leaky mitral valve for at least 10 years. The problem with an echocardiogram, is that it doesn't give an exact numeric result in the way that a blood test does. It depends a bit on the technician doing it and on interpretation.
I've just been told that mine is currently moderate and I'm now on annual checks, although 3 years ago, I was told it was moderate/severe and needed investigation.
A cardiologist explained to me that if a leak is for example at 5/10, you can get a result of 4 or 6 on an echo.
It is essentially due to a floppy piece of tissue that doesn't close up tightly enough and lets blood leak backwards. So it needs to be tightened up or replaced and there aren't any drugs that do that.
I know how worrying it is when you're told you are likely to need surgery. You don't mention any symptoms , but if you don't have any, that makes it less likely that you need surgery in the very near future.
Hi Mary, thank you so much for your reply. So as I read it you have been told you have moderate leaky valve and need an operation already? 😱
The doc didn't give me a timeline when I asked about when operation would be needed as he said he can't say.
Only symptoms I have is palpitations (which doc said are normal "good palpitations" not to worry about and breathlessness but that could be my asthma. Cardiologist said it's not from my heart but due to go back for a blood test on friday. Not sure what that is for... something he said it was for BNP? Can't remember he got me lost at talking about operation in future. 😔
No, I just meant that my results have been variable over the years. I was once told I was moderate/severe and needed investigation, but since that one its moderate.
I've never had any symptoms, but that might be a reason for needing surgery.
I do have ectopic beats (palpitations) as well but they are incredibly common and usually nothing to worry about.
Can you take somebody to your appointments with you - sometimes it helps if you get overwhelmed with information. I know it's hard but please try not to worry too much.
I was diagnosed with a heart murmur at 16 but they think I may have been born with it. Mine was leaky aortic valve. I was monitored yearly and some years there was virtually no change and other years there was a bigger change. It became moderate in my early 40s and became serious enough to require surgery at 52. So you could be at the moderate stage for years before needing surgery. The only symptom I had was slight breathlessness but nothing drastic.
I know it’s frightening, but they won’t operate unless they need to. Fingers crossed it won’t be for a long time yet.
Just on exertion. The operations themselves were fine. The first one was more stressful because of the fear of the unknown, but actually went really well. Was back on the ward the day after my op and out of bed (you won’t get any lie ins!). Had all my tubes out the following day and was able to walk around unaided, albeit a bit slow. I was allowed home after a week. I had my husband with me for the first week but then he had to go back to work. After my check up at six weeks I was allowed to drive again - thank god for power steering! I kept it to very short journeys though as the sternum is still healing so you need to be careful, it also hurts like hell if you over do it. I went back to work on ‘ease back’ after 12 weeks, doing short days and gradually increasing to full time over a month. I could have gone back full time quicker, but being the Civil Service they wouldn’t let me. I was an admin officer so wasn’t doing anything heavy or strenuous so it will depend a lot on what your job is as to how quickly you can return to work.
I know it’s easier said than done, but try not to worry about it. You could stay at the ‘watch and wait’ stage for years. I was told to just get on with my life, so I did.
Hope this helps to put your mind at rest. The BHF do some brilliant little booklets that I found really helpful once I knew I was going to have to have surgery, and of course there are plenty of us on here who have been through the surgery and can help with any questions about any stage of the process. Hopefully you won’t need us for a long time yet 🤪.
I'm so glad the operation went so well for you! It does put my mind at ease a little that if it comes to that, I would be fine.
I also hope it won't come to it for a long time as I'm only 40 and have two small kids, two girls, 4 and 1.5 years old. My parents are abroad and my husband parents have passed away so we don't have help and I need to be healthy for my kids.
Hope you are well and this virus situation is not too isolating for you.
I can understand your worry, especially with such young children. Hopefully it will be many years before you need the surgery. It is not unusual to be classified as moderate to severe for several years before they consider it bad enough to operate. They could have left my AVR a bit longer if it wasn’t for my descending aorta getting very dilated.
I was shielding but that wasn’t because of my heart, I had my spleen removed in 2016 after it went rogue and decided to kill my red blood cells instead of cleaning them, consequently I have a compromised immune system. As I got made redundant at the beginning of the lockdown I have hardly been out since the middle of March - got plenty of crafting done though! 😺
Did you have any symptoms l was diagnosed with a leaky valve in 2014. No follow up was needed l was told. I now have symptoms and waiting to have ECG and scan.
I am slightly breathless, went to GP as thought it was my asthma and my meds didn't work. GP spotted some skipping beats so sent me for 24h ECG, echo, blood test. Cardiologist said my condition is now moderate/severe, but breathlessness is not due to my heart condition, probably my asthma. The palpitations are normal with this condition I was told.
It’s worrying l know I’m actually really scared but I’m 70 this year. You have age on your side so hopefully will sail through any procedures. Good luck x
I know it is worrying, but my cardiologist said they do a lot of these procedures to a lot of 70 or even 80 year olds and they are perfectly fine after so try not to worry, I'm mainly worried as I have two small kids and they need me 24/7 I cannot be bed bound for weeks....
Thanks lm not really sure what’s wrong yet l have an ECG two weeks time and waiting for an ultrasound at the hospital I’m assuming it’s my valve causing the problems as 2014 l had regurgitation problems. Do you have any one that can help you
My symptoms are a painful thump up high in my chest so I’m guessing it’s a floppy valve but who knows l will let you know how l get on. Good luck with your blood test.
I’m 43 and was diagnosed with Mitral Valve Regurgitation about 7 years ago. I have been moderate to severe every year since then except one that was randomly moderate a couple of years ago.
I too get breathlessness which my asthma meds don’t relieve and my cardiologist says it’s not due to my heart condition. So I’m at a bit of a loss there. I didn’t have the breathlessness issue before I was diagnosed and my diagnosis came after 18 months of investigations following what at first I thought was an asthma attack with hospital admission but no meds helped.
My palpitations were really strong at first (my partner could feel them through the mattress!) and I had skipping beats but the palpitations got significantly better and the skipping beats stopped after I was prescribed Amlodipine. My resting heart rate is still higher than I would like though.
I get these random chest pains at times too.
I think what is throwing everyone is that I can still take part and enjoy high impact, cardio exercise.
I hope that makes you feel you’re not alone and also that just because you are moderate to severe doesn’t necessarily mean you will be severe next year and under the knife the next.
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