I was told very unexpectedly 3 days ago that I have a severely leaky mitral valve (regurgitation). I’d had previous ECGs due to noticing heart palpitations but nothing was picked up. Then I had a 24hr ECG as an extra check and irregular heart beats were noticed. I was asked to have an echocardiogram which lead to them finding the leak. I’m only 20 and until the last 6 months or so I have not experienced any symptoms. The symptoms I currently have seem fairly minor, but are perhaps worse than I think because they’ve crept up on me.
Any tips on how to deal with the shock and helping family members and friends come to terms with the diagnosis too?
Also, telling work? I started a new job 2 months ago so not the best timing! How would you approach the conversation? And how much is too much to tell them?
I’m also worried about about what my surgical options are likely to be. I’ve been told I will need surgery. What’s are the best options for leading a fairly normal life after recovery? I don’t yet know if it will be a replacement or a repair. Thank you in advance.
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Sorry to hear your news & can certainly understand your shock & concern as I remember feeling exactly the same.
I was 57 when I had my mitral valve repair so more than twice your age, however, having danced all my life & therefore quite fit, again with no noticeable symptoms, was blown away by the idea of a major op.
It's now nearly 7 years since my surgery & touch wood, I'm still doing my dance classes & living an active normal life & only taking aspirin and omeprazole( just to protect stomach lining).
Hopefully, you might be able to have a non invasive procedure & not need the sternum opened which greatly reduces recovery time. Unfortunately, mine proved too complicated for that but I still recovered fully within a couple of months, so at 20, you'll be way ahead!
As for work, I'd wait until you actually have the surgery date unless you feel concerned about feeling unwell or breathless in any way. Family and friends will feel concerned but want to support you but let them know just how many people have this procedure successfully & go back to their lives a lot healthier.
There's a lot of support on this forum so ask about anything that's worrying you.
Thank you so much Sundancer. It’s really reassuring hearing your experience and how well you’ve recovered.
Thank you for all the advice. Hearing your story helps me realise that there is a way through this and that there will be a time when things feel ‘normal’ again.
This is my first experience of talking to anyone on here and you’ve made it a great one.
Best wishes for a happy and healthy life, you must be so strong to have got through all this!
I’m sorry to hear about your diagnosis and at such a young age. I was diagnosed with a “slightly” leaky mitral valve some years ago by accident when being diagnosed with something else. I wasn’t referred at the time so never followed up. Then about 18 months ago, I had some chest pain with difficulty taking a deep breath and when coughing sneezing etc and assumed I’d pulled a rib when trying to manoeuvre into my car when an inconsiderate driver had parked far too close. I decided to get it checked at the surgery and my oxygen levels were low enough to move the GP into referring me immediately to hospital where I was admitted, wired up for a couple of days and told it was now a “severe” leak with regurgitation into the lungs. My BP medication was increased, I was was put on a beta blocker and discharged five days later with annual echocardiograms/cardiology appointments to follow. So far. so good.
You are very young so the treatment may be different for you, possibly with surgery suggested to either repair or replace the valve. It will very much depend on how you feel and any symptoms.
Tell your family - a problem shared is a problem halved. With regard to your new employers, if it was me I wouldn’t say anything until you know exactly what your doctors are planning for you just in case they decide against surgery in favour of medication at the present time.
I know it’s easy to say, but do try not to worry - stress does more harm than good, and you might just find an improvement at your next echo test (I did)!
I’m sure lots of people will be along to help you from their experience. Lots of good luck wishes and do let us know how you get on.
Thank you so much for sharing your experience, I no longer feel as alone in this as I did. It’s so nice to hear from people who’ve been in the same boat.
That’s great news that you were discharged! That gives me a lot of hope that things aren’t necessarily as bad as they seem.
Thank you, very good point about not telling my employers until I have more confirmation. I’d never really thought of that as an option until today.
I’ll do my best not to worry. Just also wishing all this other stuff wasn’t going on at the same time so that I could have the people I love around me during my hospital visits etc, but I know that can’t be helped at the moment.
I’m so glad I’ve found this network of people, I feel so much more reassured and positive already!
More grateful than I can put into words for you taking the time to comment on my post.
Really sorry to hear your diagnosis at such a young age.
I too have been diagnosed with a moderate to severe leaking mitral heart valve due to a very scary atrial fibrillation episode while out walking In January. I am much older than you, I’m 62, but I’d never had any indication of anything wrong with my heart and was very active!
I have read a huge amount on the NHS website and the BHF and have found many personal success stories of people leading active and healthy lives post surgery.
I know how frightening it is to suddenly discover that your heart is not working properly. I have found the cardiac nurses on the BHF healthline to be excellent, my GP has also been very supportive.
Talk to as many people as you can who have been through it. Although it is open heart surgery, it is for the medical teams pretty routine and very successful.
I find comfort in knowing they have found it and can monitor and treat it. Otherwise the outcome might be very different.
Take care and every good wish for a happy and healthy future.
So sorry to hear you’ve also had the diagnosis out of the blue.
Reading personal success stories on BHF has really helped me too. I feel like I’m starting to come to terms with a few elements of the diagnosis, although I know it’s still very early days.
I did start to think I’d rather I just didn’t know, but you’re right, it’s far better to know about it and keep it more under control that way.
Thank you so much for all of your advice, it’s really comforting to hear from people who understand exactly how this feels.
You take care too, best wishes for the future and good luck with everything
So sorry to hear about your diagnosis and especially at your age & having just started a new job.
I too have been diagnosed In April with exactly the same condition. Totally out of the blue & again mild symptoms I Had put down to a stressful job/ menopause ( I am a fit & active 55 with no cardiac history , no medication)
Unfortunately with the Covid Pandemic, everything is on hold including tests & operations unless very urgent.
For me it has been accepting that although the diagnosis seems so scary & the words “severe”written everywhere In letters from the. Cardiologist, nothing is going to happen anytime soon ( unless of course things deteriorate) but I have been reassured that the normal progression of this condition is not rapid.
Contacting this forum has been an absolute lifeline for me. Nobody can understand how you feel unless they have been through the same experiences. I have found positive stories very Uplifting.
Keep yourself fit & well BHF have some great fitness videos & information.
So sorry to hear about your diagnosis. It sounds like we’re in very similar situations, especially with the news being so recent for both of us.
I’ve been having tests, but I don’t yet know any kind of timescale for an operation, which is quite daunting because, as with you, the word ‘severe’ is being used. It sounds as though you’re in a similar boat.
That’s reassuring to hear that the normal progression isn’t rapid, I was worried about that and haven’t yet been given all that much information on the condition.
From what little I’ve experienced of this forum so far, I’m in total agreement. Hearing everyone’s stories and their positivity is showing me that there is a way through this and things do get better.
Thank you, I’ll take a look at the BHF fitness information. I’m finding it difficult to find ways to exercise while being house-bound as I’m sure you are too.
Thank you so much for sharing your experience so far and I wish you all the luck for the future. We’re on this journey together. Please do let me know how you get on. Sending you a big hug too! If you ever need someone to talk to, I’m here
Sorry to hear your recent diagnosis, you are definitely not alone! I empathise with you as it can turn your world upside down when things change so suddenly yet you still feel 'normal'.
I also have a severely leaking Mitral valve which was diagnosed when I was 20. (Caused by Endocarditis)
5 years on, I still have the leaky valve and limited symptoms. Like you, I know I will need surgery to replace or repair the valve. I have an Echo twice a year to keep an eye on things, but I definitely lead a normal life. I'm anxious about the surgery, but it's only normal to feel frightened of the unknown... I just remind myself of the positives, and remember we are a lot stronger than we think we are.
Take care & don't worry too much, there's a ton of amazing advice on this forum. If you would like to talk, feel free to send a message.
It’s really nice to hear from someone who had the same diagnosis at the same age.
You’ve hit the nail on the head, it all feels so especially weird and sudden because I feel so ‘normal’, and I’m wondering how something can be so wrong when I’ve barely noticed a difference in myself.
I’m trying to look at the positives too though. One being that I’ve suddenly got a lot more perspective on my life and what I really want and what really doesn’t matter. I have/had a tendency to stress over the little things and this has definitely made that better.
Thank you so much for your post, it’s really helped me. The same to you, feel free to send me a message if you ever need a chat about anything.
Please do let me know how you get on, and best of luck with everything, as you say, we’re stronger than we think x
Hi fluffy 2000..the most important thing you must do is keep a positive mind.. I myself have severe mitral regurgitation and should have had surgery (open heart) at Papworth this may/June but obviously put back at moment.. I've met my surgeon and he says I should have a good outcome.. He's performed 8000 of these operations in his career.. My heart is enlarged too.. I'm 60 but know people who have had replacement valves year ago and are very very active. Mine hopefully is just a repair.
Hi, I am also awaiting Mitral valve repair or replacement this Autumn. Am 69 and only discovered the problem a few months ago after a visit to the doctor for a cough! Am on the list with a Brighton surgeon whom I have spoken to only on the phone so far. When do you now expect your Op?
I admit I am terrified but am slowly trying to get prepared both practically and mentally. Most of the time I try to forget it and cannot discuss in detail with many people, so this forum is a godsend. I also live alone and feel I cannot share my decisions with the few family members I have for various reasons......Have a friend who has promised to stay afterwards, but at our age, anything could happen.
Hi Funnyfennel. That must have been such a shock for you! It sounds like we’re on very similar journeys. I’m currently 1 month through an ‘up to’ 6 month waiting list for surgery, which will most likely a repair.
My first feelings were also that the whole thing was utterly terrifying, so I assure you this is completely normal. I have started to come to terms with the idea. I‘ve found it helps to let yourself feel every emotion under the sun about it, you deserve to, you’re going through this huge thing after all and it’s bound to make you feel all sorts of emotions. I try to focus on how much better it is that I know about it now so that something can be done about it sooner.
I would urge you to try to talk to your family about it if you possibly can. We often think we’re protecting our loved ones when we keep things from them, but in many ways talking to them should help them worry less than they are now as they’ll have the full picture of what’s going on and what to expect and can prepare for it as much as possible.
I can’t tell you for definite that everything will be okay, but what I do know is that these surgeons can do this surgery in their sleep and most have done it hundreds, often thousands, of times before. Easier said than done, but please try not to worry. Feel free to message me any time
Hi Fluffy, I was diagnosed with a murmur and then they discovered a mitral valve leak over 18 months ago, I went through the same process as you. I wasn’t given a choice over surgery, they would aim for a repair but if necessary they would replace my valve. I didn’t find out which had happened until I woke up, that was in November 2018. I was running and training for a marathon back then and now I’m back doing the same. If you fancy chatting more drop me a message, I can share any advice you need. Talk soon.
Hi Irishwolfhound. Thank you for sharing your story, it’s comforting knowing it is possible to get back to the same place you were at before all of this. Thank you, I will do. Best wishes
Hi I'm 74 yrs old and was diagnosed with irregular heartbeat and leaky mitral valve about 3 yrs ago. I was playing squash and tennis for decades. I had the mitral valve repaired last August 2019 and still have irregular heart beat which I'm taking medication . I'm back playing tennis (doubles) exercising daily and feel no different.
Squash is out as they have advised me.x
I run my own cleaning business and life is good.
All credit to the surgeon and his team. I was extremely nervous and worried before the operation. I wanted to encourage you as the recovery is almost back to normal for me at my age. You have youth on your side.
Hi Doonedog. Thank you so much, it’s really comforting hearing so many success stories like yours. It’s especially reassuring to hear how well you’re doing and how your life has got back to normal in most ways. Thank you for all of your kind words. Very best wishes
Hi Funnyfennel. That must have been such a shock for you! It sounds like we’re on very similar journeys. I’m currently 1 month through an ‘up to’ 6 month waiting list for surgery, which will most likely a repair.
My first feelings were also that the whole thing was utterly terrifying, so I assure you this is completely normal. I have started to come to terms with the idea. I‘ve found it helps to let yourself feel every emotion under the sun about it, you deserve to, you’re going through this huge thing after all and it’s bound to make you feel all sorts of emotions. I try to focus on how much better it is that I know about it now so that something can be done about it sooner.
I would urge you to try to talk to your family about it if you possibly can. We often think we’re protecting our loved ones when we keep things from them, but in many ways talking to them should help them worry less than they are now as they’ll have the full picture of what’s going on and what to expect and can prepare for it as much as possible.
I can’t tell you for definite that everything will be okay, but what I do know is that these surgeons can do this surgery in their sleep and most have done it hundreds, often thousands, of times before. Easier said than done, but please try not to worry. Feel free to message me any time
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