leaky heart valve: I’ve been diagnosed... - British Heart Fou...

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leaky heart valve

RocketRuby profile image
15 Replies

I’ve been diagnosed with a mild to moderate leaky valve.I’ve not been feeling myself for a while chest pain/uncomfortable under my breast fatigue short of breath dizziness abdo pain dry cough

I’ve seen a consultant who didn’t see concerned with any of these symptoms only the shortness of breath and told me it was the wrong place to feel the pain in my chest

He has arranged some more tests

I did feel like a fraud after seeing him

I’m really struggling with all this especially the fatigue and trying to work

Any advice

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RocketRuby profile image
RocketRuby
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15 Replies
Yumz199725 profile image
Yumz199725

Mild to moderate is good, but sounds like you have been having symptoms so maybe contact your heart consultant maybe or are you still under investigation and don't have a cardiologist. Mine is moderate to severe but so far so good not symptomatic at the moment. Yeah I agree the fatigue is bad, do you have palpitations or irregular heart rhythms, sorry if I'm drowning you in questions???

RocketRuby profile image
RocketRuby in reply to Yumz199725

yes I do have palpitations

1234_6 profile image
1234_6

Hi RockyRuby, I'll leave others to respond about your heart condition queries but I just wanted to say never ever be made to feel a fraud if you don't feel well. Unfortunately it seems that some Consultants do sometimes give us the brush-off if what we are feeling doesn't quite fit in to / in with their specialisation...but that doesn't mean you are a fraud. It usually just means they just dont have time to get involved with something for which they wouldn't usually be responsible for treating.

The good thing is the Consultant is arranging more tests for your heart condition. Hopefully these will be arranged soon. Once you've had the tests & maybe meds or treatment we all hope you'll be feeling better.

A few suggestions for you to consider in the meantime ...

1) Can you talk to your GP about the cough & easing that? It's just that a mixture of coughing & deep breaths due to breathlessness can cause rib inflammation & / or muscle issues either of which can cause chest pain on their own & this might be something that is adding to any pain caused by your heart issues.

2) Can you ask GP for a blood test to check Iron levels Vit D, all of the B vitamins and anything else where an imbalance might cause fatigue ... you might be anemic, etc.?

3) After (2) is sorted ... can you ask if there is a good multi-vit top-up safe to take with your heart and any other meds ?. This top-up sometimes helps with tiredness.

4)with regards to the fatigue & working .....

You should be able to tell HR that you have a heart condition & I would have expected that some allowances / changes could be made for you / to make things esier for you to keep working. For example my work has let me swop to flexi hours because, believe it or not I'm worse in the mornings when my heart rate is far lower from the over-night sleep.

Could you reduce your working hours? (This is assuming that you could still manage financially on reduced hours)

Are you aware of how much sick time & pay you are entitled to, and could you use some of it - on a really bad day if needed?

I wonder if the BHF website itself has any info to assist you with issues relating to working while ill. Other places to.look for info might be Government website covering Employment Legislation, and also the HSE (Health & Safety Executive ) website.

5)Do what you can. Dont do so much that you get exhausted, Don't over tire yourself, Rest when you can. Take good care of yourself.

Wishing you all the best.

RocketRuby profile image
RocketRuby in reply to 1234_6

Thank you for you advice very helpful

Until you mentioned it i feel the worst in the morning

Rovelli profile image
Rovelli in reply to RocketRuby

I have a leaky heart valve too. The consultant said that morning horrid feeling is lung congestion, paroxysmal nocturnal dyspnea. It feels better if you can sit up and lean forward. Of course when you are very tired you don't wake up when you have slipped in to a position that doesn't suit your leak.

Douglas91 profile image
Douglas91

yep I understand how you feel. I was diagnosed with a heart murmur about 2 years ago when I had a pre med examination before I underwent a replacement shoulder surgery. I had been feeling a bit breathless when I exerted myself in the months previous to this appointment. Ended up in A and E at one point, they couldn’t find anything wrong only that I had a blood pressure issue. Nothing was picked up for months till this pre med. the surgeon said he could hear something noisy in my heart. Cancelled operation. Had echo done which revealed a problem with a valve. The sonography wasn’t bothered tbh. Said go back to GP which I did My GP wasn’t concerned either just said it’s a case of watchful waiting. The conclusion is I have a Leaky valve too. I’m told many people have leaky valves and sometimes they are “innocent “and don’t cause problems. It’s still a frightening experience worrying if it will get worse overtime. I’m sure the doctors know what they’re doing but all the same having a potential cardiac issue does unnerve me. I hope you get some positive news after all the investigations are done. You will feel better once you get a proper diagnosis. For me it’s the fear of the unknown. Good luck

RocketRuby profile image
RocketRuby in reply to Douglas91

Thank you for taking the time to reply

MummaSoap profile image
MummaSoap

I don’t have experience of leaky heart valves personally but I have dilated cardiomyopathy and heart failure, 3 children (4.5, 3 and 20 months), work 4 days a week and some Wally (me!) thought it would be a good idea to join the playgroup committee! 😂🙈😅

I wholly sympathise with you on the fatigue front, it’s a daily battle and sometimes I catch myself napping around 5pm! I sleep between 7-12 hours a night and unfortunately never feel rested 🙃

Please don’t feel like a fraud, what you feel is valid and if it’s continuing then important that the symptoms are investigated regardless of whether they are typical for your type of cardiac illness or not.

I too have been dismissed regarding some my symptoms by my cardiologist and it’s not for them to put us in a box for one condition or another but to investigate all symptoms to a conclusion that results in treatment or all deadly/serious illnesses are ruled out for those symptoms. I appreciate that the system is vastly overstretched and that’s not always how it is but that’s how it should be.

You’re also allowed to disagree with your cardiologist and say, with respect, I don’t feel you’re listening to me/taking me seriously.

I hope that you get to the root cause of your symptoms and if you lose faith in your cardiologist or the relationship breaks down beyond repair, don’t be afraid to ask to be referred to a different cardiologist.

Wishing you all the best, hope you get some answers soon.

Take care

Soap 🧼

RocketRuby profile image
RocketRuby in reply to MummaSoap

Thank you

catherine1712 profile image
catherine1712

hi, i was found to have the same results to yours and no action being taken except for a yearly echo cardiogram. i experience the same symptom you stated too. with my best wishes.

marypw profile image
marypw

Please don’t worry too much about a leaky mitral valve. Mine has been mild-moderate for over 12 years and I just get annual echocardiograms to monitor it.

I do have ectopic beats but they are pretty well controlled on bisoprolol. I have also had a stress echo on a bike to check for any signs of angina,

I know it’s worrying to find out you have a cardiac issue, but anxiety can definitely make you much more conscious of your symptoms. Best wishes

Silvertail profile image
Silvertail

I have moderate mitral regurgitation, but they don't worry about it. I have a few other issues that they don't worry about, either. Just say i have a 'quirky' heart. 😊

Anon2023 profile image
Anon2023

hi. I had severe mitral regurgitation and needed a replacement valve. They told me my valve would have been leaking for a long time before I became symptomatic and I’d probably had it since childhood. I knew it I had problems because of fatigue, palpitations and coughing up pink foam. Apparently the cough was due to pulmonary hypertension caused by the leak (mine was severe though) and it stopped after the surgery. I also had chest pain which they said was unrelated but seemed to be too much of a coincidence for me. Although I’ve got a replacement valve it still leaks slightly and they tell me that everyone has some degree of leak on their valves and not to worry. Please try not to worry, yours might never get any worse or require surgery, not every leak progresses to severe or requires intervention. Please don’t let them treat you like a fraud, you aren’t. Xx

RocketRuby profile image
RocketRuby in reply to Anon2023

thank you

Anon2023 profile image
Anon2023 in reply to RocketRuby

btw don’t let the medical profession fob you off. If you don’t feel well you have every right to seek treatment. I went to my gp for a year with palpitations and coughing up pink foam. I was given antibiotics for 6 months for a chest infection that I wasn’t even tested for. Fortunately I then saw a locum who worked out that it could be my heart and referred me to cardiology. I’m not saying that you need to fear the worst, you don’t, but you know your body better than anybody else. Good luck. Xx

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