Mitral valve diagnosis

[A75-mw]

Hi all, I discovered recently that I have moderate mitral valve regurgitation after receiving a copy of the letter sent to my GP. This was quite a shock to me and I have been struggling to accept this. I haven’t had a cardiology appointment but got an appointment for another echocardiogram next June. I have been having investigations for atrial fibrillation for 5 years. I have been feeling depressed since reading that letter.

[Anon2023]

Hi. I’m sorry that you are going through this, it’s not easy especially as it doesn’t appear that anyone has explained the contents of the letter to you properly. I imagine it was an awful shock to you. I felt exactly the same when I had an echo and was told 2 weeks after that I had severe mitral valve regurgitation. I had waited 10 months for the echo due to covid and had assumed that because they weren’t hurrying, that they weren’t worried. If it puts your mind at ease the first question that I asked the cardiologist was whether I was going to drop dead. He said it wasn’t that kind of heart problem and that I had probably lived with it for a long time and that it’s treatable . If your regurgitation is moderate they might put you on medication now but they won’t be in any hurry to operate. They tend only to do surgery when the regurgitation is severe and even then there’s a waiting list. It’s difficult to say if or when your regurgitation will become severe and it’s not a death sentence. They are developing minimally invasive techniques all the time and when I had my last mitral valve replacement in January I was told that in the future they’ll all be done by minimally invasive techniques. Even if you do need surgery before that happens then you will be in the hands of a very experienced team of cardiac thoracic surgeons who deal with these ops day in and day out. I know how terrified you must feel but at least now you have the benefit of knowing what the problem is and that it’s treatable. Don’t read the internet other than reliable sites like the British heart foundation l. Dr Google likes to spout of out of date statistics that are out of date and likely to be irrelevant to you. Try not to worry , you are not alone.

[marypw]

It is a shock when you just find out a diagnosis like that without it being put into context. Lots of people have leaky valves and don't even know it. I've had a moderately leaky mitral valve for at least 12 years with no problem. Do be aware that echocardiograms are not an exact science and can give slight variable results. I did have one that was a bit worse than moderate, but subsequent ones were back to moderate. You will probably get an echo every year. Also, if you ever need any surgery you will need to tell the anaesthetist and they may want to check out a recent echo result or indeed get you to have another one. But that is to ensure your safety, so no bad thing.I hope that reassures you somewhat.

P.s. you haven't mentioned any symptoms, but if you do start having breathlessness etc, then try to get a cardiology referral.

[Rovelli in reply to marypw]

Hello Mary, I have had moderate mitral regurgitation for 3 years. So far I have resisted any medication. I wonder if you take any. I'm keen to hear of others' experiences.

[marypw in reply to Rovelli]

I take bisoprolol for ectopics and ramipril for hypertension. I don't have any problems with either of them.

[Hidden]

Hi, I'm not sure if there's a good way to find out about Valve Regurgitation, but, I can appreciate it must be worrying to find out by a letter between the hospital and GP.

Have you been able to speak with your GP practice in the first instance as they could contact the cardiology team to find out if you will receive an appointment to see a Cardiologist. Obviously they're better at explaining what happens next, if indeed anything.

That your currently in a moderate status may explain why your next Echo isn't until June next year. It's probable that no action will be carried out until it becomes severe, but, you can never tell.

If you have AFib that puts another dimension into your treatment, so I'd definitely ask for an appointment for peace of mind if nothing else at this stage.

I've been doing this for a long time, and it's easy for me to say don't worry, but, the main thing is that you've been diagnosed and that's a start.

Best Wishes

[Beatles1956]

Hi A75-mwI appreciate that this is not the best way to be told; I was given that same diagnosis by a cardiology consultant face to face. He told me to be careful not to get any infection, wear gloves when gardening, that sort of thing, and I would have another echo in about a year. At that stage, it was clearly not something to get too worried about, but just to be aware of.

So, for now, find out from your GP what happens next; you may well get a cardiology referral to discuss it.

Hope that helps a little.

[A75-mw in reply to Beatles1956]

Thankyou all so much for replying with really useful comments, it has really helped me to hear from others who have had this diagnosis, Apart from occasional A fib I have no other symptoms so I will relax now and carry on until next echocardiogram.

[Larneybuds in reply to A75-mw]

Good morning....I have severe mitral regurgitation and am waiting for surgery.....though the wait and cancellations for that have been as worrying as the diagnosis.!! The two symptoms to really be aware of are any breathlessness and fluid retention. This will be particularly noticeable at the ankles but I also had it elsewhere in the body. If you experience any of these you should inform your GP. I wd also just be mindful if you exercise or keep fit....always a bonus but might be an idea to find out what not to do. I found reading and informing myself about the condition helped with the fear factor. Only use recognised sources....googling in itself can be frightening!. BHF....great source for information plus their nurses are available to chat to if you can't get in touch with your GP. What I have found out from the lovely people on this forum is that some have such serious heart conditions and have had so many things happen to them that mitral valve problems seem fairly lightweight in comparison. In saying that I am not taking the seriousness away from it but it has made me realise what some people have to go through on a daily basis who are unable to have operations to fix things. Just make sure you go for any requested check ups, and be aware of changes . Take care ....all the best x

[Beatles1956 in reply to A75-mw]

I forgot to say - the good news is that you are now in the system, and will be monitored , so any changes will be picked up and acted upon. In that respect, you are better off than anyone who has not been diagnosed, but could have the issue, undetected.

[Hidden]

I have moderate leaky mitral valve,Occasional AF, arrhythmia and bigemeny, been discharged from cardiology,they don’t seem too bothered neither does my GP,so I just get on with it !😱

[Noviceartist]

Hi A75-mw. Thanks for posting on here as I’ve not plucked up the courage yet but have had a similar diagnosis earlier this year with mitral and tricuspid valve prolapse and moderate regurgitation. Like you I was shocked initially as had few symptoms (although worrying palpitations). Cardiology advice has differed slightly but generally the view is monitor and have regular reviews. It seems many people carry on as normal with some level of regurgitation and little disruption to day to day life. I’ve found a small dose (1.25mg) of beta blocker is helping. Hope you’re reassured a little by replies on here but a conversation with a specialist is important for sure.

[Bobkins99]

I have had a slight leaky mitral since 1990. It was never a problem. I had a pacemaker in 2018 and the echo showed the valve had got worse but still nothing to worry about. Unfortunately it was not followed up through covid and deteriorated rapidly through 2021, but I still wouldn't really have been aware of I hadn't then contracted endocarditis. I've just finished my 6 week stay in hospital for IV antibiotics and have also had mitral repair at the Brompton. I won't gloss over it and say it's a walk in the park,because open heart surgery really isn't. But at the same time recovery is much quicker then I had expected and I have every intention of getting back to full health asap. It's a question of pushing myself and being positive. If you see my other post that I posted just before the op you will see how much positive reinforcement there is in this group

[Lemon19]

Hi,

Please try not to worry too much - I had a diagnosis of moderate mitral regurgitation when I was 27. I lived and worked full time with no real issues until I was 55! It then deteriorated to severe regurgitation and last Nov I was lucky enough to get it repaired by the fantastic Papworth team! But even with a severe diagnosis I carried on working and living as normal (albeit at a bit of a slower pace 🤣). 9 months post op I have been completely discharged from cardiology. Try not to panic too much about your diagnosis. Good luck for the future.

[SaraTwycross]

Its always a shock getting a diagnosis. I am sure you will be fine. Its always scary. I had a mitral valve replacement with a metal valve. I dont know what kind of valve theyll give you. when i was 18. I am now 47. Things have come a long. Try and keep yourself occupied do something you love doing or start something new most of all be kind to yourself, hugs sara

[A75-mw in reply to SaraTwycross]

Thankyou so much for all the support, knowing what other people have experienced has certainly helped and made me realise there are people much worse off than me.

[Pudin]

You may like to watch You tube - York cardiologist video on interpreting echo's think it helps to put into perspective that a lot of these variations ,can be "normal" and as someone else said echo's do have a certain amount of subjectivity to them. Take care

[Silvertail]

I’ve had moderate mitral regurgitation for years. My cardio isn’t bothered about it. He thinks it won’t progress. It’s just one of the other issues of my heart problems he doesn’t bother about. Hopefully yours won’t progress. I’d be interested to know how you get on. If you’re not having another echo for a year I’d think he is happy with your present condition. Atrial fibrillation is another matter which needs more attention. These are my thoughts only - I have no medical training.

[Rovelli in reply to Silvertail]

Wondering if you take any medication. I am resisting pressure at the moment to start because of fear of unwanted side effects.

[Silvertail in reply to Rovelli]

My medications are to cover my cardiac problems in general. Candesartan, Bisoprolol, Spironolactone, Aspirin.

[2Livebetter]

I’ve just been diagnosed too plus a dilated atrium and pericarditis! Like you I’m in shock I have no family history at all. Now unsurprisingly I also have high BP and cholesterol.

Where are we even meant to start? Can I have a hot bath? Eat chips sometimes, a glass of wine? Can I cut the grass, go back to jogging?

At the moment even climbing stairs puts pressure on my chest and I’m not 60yrs yet.

[Champion79]

hey i was diagnosed with MVP around 13 years ago. Just stumbled across it on Boxing Day having drank too much over Xmas. When I was told I was 32 and I thought my life was over. I was fit and healthy, but did like a good drink. I educated myself a little more and realised I needed to change ny lifestyle . It can impact you outlook to life when you least expect it, however you need to think you have the best facilities in the world at your feet to be on top of it all. All I’d say is stay cool, if is very common, most people who have MVP don’t even know they have it. But there are loads of things you can do to keep yourself healthy and active and the biggest one if keep active and healthy! Good luck.