Mitral Valve Leak

[Ireness]

I saw a cardiology registrar today about the symptoms of my mild to moderate mitral valve leak which has only started during the last five months.

He’s given me isosorbide mononitrate and arranged a 24 hour ecg.

Does anyone know if this will be effective?

I feel it’s just masking the symptoms. This will be the third heart drug started since October.

I haven’t got a lot of faith in him as he didn’t even know what the whooshing sound was from my chest to throat (or that’s what it feels like). He said I have to accept I’ve got heart failure.

Had anyone else got a second opinion? My gut feeling is I need surgery. So many of my family have died suddenly and I’m really scared.

I can’t get thoughts of dying out of my mind and it’s driving me mad. I just want to enjoy what I’ve got.

[Rovelli]

One thing to remember is that every operation comes with its own risk, so they are not done lightly. If you can live a normal-ish life, could you be content for a while. I don't take any drugs at all for my moderate leak, at the moment. I've noticed that I only have trouble if I overdo things, or I'm ill from something else.

[Ireness in reply to Rovelli]

Many thanks for replying. Do you have any symptoms at all?

I’m getting a lot of symptoms everyday. I can’t walk very far and on inclines my chest gets tight and I have to stop. When I go to bed my heart literally starts thudding and my breathing is really fast. I get palpitations on and off all day. Also my chest is very creaky lying down. The whooshing sound happens every day. My feet swell every evening.

There’s been a lot of sudden deaths in my family over the years from heart related issues and I guess I’m over worrying about that. I don’t know if that will make it worse.

It’s frightening how quickly this has come on. Not long after my hip replacement 5 months ago I could do my favourite walk and get up the hill no problem without stopping but now I can’t.

[Rovelli in reply to Ireness]

I have palpitations sometimes, and lung congestion sometimes, but luckily no swelling yet. I try to avoid hills, but I have noticed that the air humidity makes a big difference. If humidity is high, with either low or high temperature, then I can't manage an incline that I will do on another day. Apparently humidity above about 70% is a problem, due to the amount of oxygen available. Weather apps give this information. The pulmonary congestion can happen if I get too flat in bed. So I need to be propped on the left side a bit more than the right, but not too much or terrible neuralgia happens. I never lie on my left, and if it starts to feel wrong lying on my right, I go back to lying on my back and try again later on.

Definitely ask more questions when you go again. I had some help when I phoned the department at the hospital, and was able to explain my concerns to the secretaries, so if you don't see a consultant at the test, it might be worth a try, or ask the Gp to write to them.

I refused the drugs as I couldn't see that I would be much better off, but I am willing to re-think later.

Best wishes🐙

[Ireness in reply to Rovelli]

Thanks. I didn’t know about humidity.

I sent an email to the Consultant’s secretary last night and she phoned me this morning. She’s amazing.

She’s going to speak to the Consultant for me.

[Bobkins99]

I had a mild mitral leak for 30 years. I had a pacemaker fitted in 2018 when it was noticed that the Mittal leak was worse. They were supposed to keep an eye on it but covid got in the way. After I restored normal excercise post covid I noticed how easily I got out of breath but just put it down to old age. Then I got a chest infection that wouldn't clear up. I went to the GP who listened to my chest and said my murmer was"very pronounced". He sent me to the hospital for a blood test and basically I didn't come out for 6 weeks. I had suspected endocarditis and my mitral had failed. In the 6 week anti biotic regime I was also shipped off to the Brompton for a mitral repair. Not sure what to say to you, but basically I lived with a leaky Mitral for 30 years without any issues until it finally broke (neo cords snapped). Whether it broke because of the endocarditis no one can tell.

[Annaelizabeth]

I am not a medical person. However I do have heart failure, I now have a CRT pacemaker. My suggestion would be to find a clinical cardiologist and get all the relevant tests done. There is a very good cocktail of drugs available now to help heart failure which enables us with HF to lead acceptable lives, and move forward with confidence. I am not suggesting that life will be the same, but I do say relax, you don't know who they are, but there are thousands in the same boat, you probably pass them in the street everyday. Look forward, change the things you can - be proactive. And smile!

[Ireness in reply to Annaelizabeth]

Many thanks for replying.

I’ve had an echocardiogram which diagnosed the mitral valve regurgitation. That wasn’t there on the echocardiogram 5 months ago.

For years I’ve also had LBBB and moderately impaired LV systolic function. They’ve said it’s non ischaemic dilated cardiomyopathy following a CT scan which also showed no significant coronary artery disease.

If there’s no coronary artery disease can I still get Angina?

He’s given me nitrates for it but that’s never been mentioned before.

I started Dapagliflozin last October and Eplerenone in January which increased my ejection fraction from 35-40% to 41%. I was disappointed with that for such strong drugs.

I really don’t like taking drugs but I will if it keeps me alive. I just don’t want to take unnecessary ones. The nitrate one has to be taken 6 hours apart too which would be difficult with my job.

I’d find a way if I knew it’d be helpful.