Mitral Valve Leak

[Ireness]

I had an echocardiogram to see if my ejection fraction had improved after starting Dapagliflozin and Eplenernone a few months ago.

My ejection fraction then was about 30-35% and he said it is now moderately impaired with an ejection fraction around 41%.

Worryingly the mitral valve has leaked into a mild to moderate fashion.

This is new and I really don’t know how serious this is or whether it’ll require surgery. I’m not seeing the cardiologist for a few weeks.

I have been really breathless and started getting palpitations again for a couple of months but I’ve put that down to an ongoing chest infection that I can’t seem to get rid of. I had a chest x ray a couple of days ago but haven’t had the results yet.

I looked on the internet and it said I might have 5 years left.

I’d be grateful for any advice if anyone knows about this or has experienced it.

[Yumz199725]

Hi IrenessI don't know much about mitral valve leak but I have aortic stenosis and regurgitation it's moderate and severe. Because your having symptoms I would definitely get in touch with your cardiologist just to be safe. Did they tell you what there plan is? I have been told I will need surgery eventually so maybe that's what your cardiologist will tell you. I know what it's like scaring yourself half to death with what Google tells you so I definitely wouldn't advice listening to any thing the Internet tells you unless it's a well sourced Web site like NHS or BHF. 😉

[Ireness in reply to Yumz199725]

Many thanks for replying. I’m seeing my cardiologist in a couple of weeks. I got a letter this morning from the cardiologist but it didn’t say what the plan is.

I shouldn’t have looked at the internet really as it is rather scary.

[Hidden]

Hello

Sorry to hear you have had a bad chest infection which will make you feel breathless and hopefully the results from your chest x ray will be back soon

If needed surgery can be done to replace valves and I am sure at your appointment they will go through everything with you and if they feel at this stage it would be needed or not but I know the waiting can be the worst bit for most of us

Meanwhile we do have a habit of asking Dr Google as I call it and I am guilty of doing that to and my Doctor gets so annoyed with me as she always points out that it spits out the worst scenario as well as not having my medical records and quite firmly she tells me to stay of it

Do I listen well no even though I try but what you have read I would ignore and wait for your appointment with the knowledge they are so good now at what they do they will make sure you are going to be alright

Let us know how you get on with your x ray results as well as your appointment with the Cardiologist if you have time x

[Ireness in reply to Hidden]

Many thanks for your reply.

It’s too tempting to lol at the internet. It was a bit of a shock really as there was no mention of the mitral valve on my echocardiogram five months ago.

I had a hip replacement last October and since then I’ve had a few symptoms which I’d put down to surgery or chest infection.

I guess the one where I can hear liquid swishing around is the mitral valve though. It’s very strange.

[Hidden in reply to Ireness]

Hello

I agree it is so tempting to ask Google and I have been doing it years yet been honest I am struggling to think of anytime that I have asked Google and come away feeling any better for it but worse

I have a very light leaky valve and I asked my Doctor what did she hear when she was listening and she said like you a swishing sound but I cannot hear it myself

You seem to have been through it and have a few bits to sort out but I am sure they will get resolved

Keep us updated x

[Ireness in reply to Hidden]

Thanks. I’ll let you know what the cardiologist says in a couple of weeks.

[Hidden in reply to Ireness]

x

[Larneybuds]

Good morning....I have had mitral and tricuspid valve surgery. Your cardiologist will do tests etc to see how much the valve is leaking and whether it needs operating on. Sometimes it's not severe enough to operate on yet but if it is they will either repair or replace the valve. I had both my valves repaired and I was told they prefer to repair but this preference might just be down to individual cardiologists. If you Google, only use recommended sites...British Heart Foundation, NHS etc....or any other site people on the forum recommend and when you see your cardiologist make sure you ask lots of questions so that you are clear about exactly what's going on and what needs doing. People on the forum are fantastic with support and advice so don't ever be afraid to ask questions or express concerns. I wish you all the best and hope you get sorted x

[Ireness in reply to Larneybuds]

Thank you so much for replying. What tests do they do to see how much it’s leaking? It is a worry that I didn’t have it 5 months ago and it’s already mild to moderate.

Although I know what the symptoms are now if they leave it they won’t improve. I’m glad I’ve got an appointment with the cardiologist soon.

[Larneybuds in reply to Ireness]

I had hardly any symptoms and mine was severe when discovered!!. Think an ultra sound scan shows them how the valve is working and how bad the leak is... it is painless . If they decide to operate there are obviously other tests they do before hand....I had an angiogram and heart pressure tests plus ultra sound on neck to make sure blood flow was good. The staff are amazing and will do everything to help you through any tests. Try not to start getting stressed about things before they happen. At every test I had I asked lots of questions as I wanted to know exactly what was happening to me and got a better insight and understanding of things. Think they liked the fact I was interested in what they were doing lol and at the time of the op I was ok about it all and realised it was a process I had to go through to get on the road to recovery. . You will be fine. Try not to be too scared xx

[Ireness in reply to Larneybuds]

Thanks. I’ve had the echocardiogram. I was just expecting a result on my ejection fraction so the leaky valve is a bit of a shock. I wonder if it was just missed on the previous ones I’ve had. The sonographer was very thorough this time. On reflection I think this has been brewing for a while but I’ve put symptoms down to other things.

[Larneybuds in reply to Ireness]

Yes ...I didn't have typical symptoms....I thought I felt under the weather because of a possible thyroid deficiency so I got the shock of my life when they diagnosed me. If you have a leaky valve I'm surprised it wasnt detected on the echo but again things don't always show up immediately do they. All I can tell you is valve surgery is very common and so many people on the forum have had it done and will all have varying stories to tell about different tests and medications etc. and the recoveries they have made. I think the difference consultants all have their own ways of doing things lol it just make sure you are clear about it all and get the answers you want x

[Ireness in reply to Larneybuds]

Also, how long did it take you to recover from the surgery? Were you in ITU afterwards?

[Larneybuds in reply to Ireness]

I am still recovering after 7 months....nothing to do with the op...I had a long stay in hospital because of an infection after 5 days... then I had further problems later with sodium levels so my recovery has been slower. I was in ICU for 2days then on a ward. The staff are amazing....pain management was excellent but a lot of your recovery is down to you.... attitude, determination and positivity x

[Ireness in reply to Larneybuds]

I just want to feel well again. I waited three years for my hip replacement and was so relieved to be on the road to recovery so this is quite a blow.

[Larneybuds in reply to Ireness]

I am sure you will feel well again. Plenty of people on the forum live fairly normal lives after this surgery. Dont let your mind work overtime . Good luck with everything. X

[Ireness in reply to Larneybuds]

Thank you x

[pjw17]

HelloI found out about leaky MV a couple of years ago after HA and stent.

When the Heart Nurse told me she mentioned that a lot of the population could have a leaky MV and not know it and lead a normal life .

I'm sure if it was serious , your cardiologist would have told you .

You should be in a better frame of mind after seeing him soon .

Good luck ,

Post how you got on .

[Ireness in reply to pjw17]

Many thanks for replying. I got a letter from the cardiologist yesterday telling me about it. I almost wish I didn’t know until the consultation with him.

[Rovelli]

Hi Ireness, I have a moderate mitral valve leak too. I recently had a review, and after 3 years it is no worse. If the weather is damp or humid I sometimes have trouble walking up an incline, but I still walk a great deal, and can go fairly fast and carry shopping. A friend has had a valve leak for 12 years without dying. How did you find out your ejection fraction? I have scoured all my documents and can not find it. Does it have another name perhaps?

[Ireness]

Hi Rovelli. Many thanks for replying. The ejection fraction was calculated during the echocardiogram.

I had that originally as I was diagnosed with moderately impaired LV systolic dysfunction with a left bundle branch block on the ECG and it was thought that this was all likely due to non-ischemic dilated cardiomyopathy.

I had a CT angiogram which showed no significant coronary artery disease. On the echocardiogram at the end of September 2022 it said my heart sounds were normal so this has come on suddenly.

My recent echocardiogram was only done to see if my ejection fraction had improved on the new drugs and I wasn’t expecting to find out my valve is leaking. Although I knew something wasn’t right but put it down to other things.

[Hidden]

I know it’s really hard but try not to look online. I did and scared myself silly. If you do, make sure you are looking at medical journals etc. there isn’t much out there that isn’t scary though to be honest. I had a leaking mitral valve with moderate/ severe regurgitation and bilateral mitral valve prolapse. I also had an Atrial Septal Defect which was meaning that my ejection fraction wasn’t necessarily impacted a great deal as they both compensated each other. I’m 31, had it all my life and never known and it has been an interesting journey.

I had surgery in Nov 22, and I now have a mechanical mitral valve.

As you have new symptoms get the GP to write an expedite letter (assuming you live in the UK) to your cardiologist. So they are aware of new symptoms etc. when you get your date for an appointment to see the cardiologist go with a list of all the questions you have. Life expectancy, if you’ll need surgery. Anything you think you need to ask do so.

[Ireness]

Many thanks for replying. I’ve started to make a list for the cardiologist. I’ve got an appointment in a couple of weeks to see him.

[Hidden]

Looking online is the first natural thing for us modern humans to do. You will find every answer on there! When i was in ICU diagnosed with severe heart failure with a 12% ejection rate, i googled to find out the ins and outs., "90% die within the first year of being diagnosed with severe heart failure" My god!

Firstly these numbers and studies will most likely have been taken from years ago and irrelevant to todays numbers. 2ndly you can find any answer you want if you look hard enough. Each person and condition is different. Lastly, its coming up 3 years and i plan to squeeze another 12 or more to at least my 50th. whatever the lord or mighty universe has planned for me. It is what it is. Good luck x

[Ireness]

Ah thank you. I’m glad you’re okay. That must have been quite a shock for you x