So I posted a while ago about having ventricular bigeminy and that I was having a private echo done. A&E, my GP and my cardiologist said to not have it because my heart structure won't change in 7 months.
I got my report back today and it turns I have pulmonary, mitral and tricuspid regurgitation.
I worked in cardiac theatres and I never saw a pulmonary valve replacement. 7 months since my last one with no regurgitation at all, and now this.
I feel like I have been given a death sentence.
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Blackwolf_7619
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Hi Blackwolf _7619. So sorry to hear just how much your heart has changed in 7 months! To have all 3 valves leaking at once 💔. Did they say how leaky the valves are, mild, moderate, or severe??? Does that mean more surgery? Sorry for all the questions hun, wish you all best and keep us updated on what the next steps are for you. Take care x ❤️
I only got the report today. I have sent it to my cardiologist but I know he won't do anything about it. He wanted to give me Flacainide for my ectopics but now I have this problem, I won't be able to take it.
It's alot to go through in one day! Hopefully your cardiologist will know what to do next probably will suggest an echo every year if that isn't what your care plan isn't already, I've never heard of that tablet before I'm on verapamil for my ectopics x
I think it is possible to have three valves leaking at the same time as I have aortic, mitral and tricuspid regurgitation. I think its the severity of how much the valves are leaking. 💔
I’m sorry to hear what you’re going through. I don’t know a about valves so I hope you receive the care you need. It just goes to show how all the medics felt you didn’t need another echo so soon, but good job you had it done. Keep us posted on the decisions made. All the best Diane.
Valve regurgitation isn’t a death sentence. In fact, many people are going to have some degree of valve regurgitation as they grow older. As Yumz says, it’s the severity of valve regurgitation that is the important thing. Valve replacement is only carried out when regurgitation is severe. It’s unlikely that you will go from zero to severe in just seven months. Chances are if it was seen in your private echocardiogram, it was already there when you had your previous one.
Sometimes the sonographer is unable to obtain a good “window” during the scan and isn’t able to get the best view. The other point to bear in mind is that often a cardiologist will review a patient’s scan and if it there are no issues that need further immediate action then they often tell the patient that their scan is nothing to be concerned about. Unfortunately, what many people interpret that to mean is “my heart is perfect and there’s nothing wrong with it whatsoever” which may not quite be the case. It just means that your heart is functioning within acceptable parameters and no further action is necessary. Or alternatively they may recommend another echocardiogram eg every two years to monitor for any progression of valve regurgitation or enlargement if those are seen.
The communication of these findings to patients is often very poor, and I’ve experienced very similar to you and only found out when I received a copy of the cardiologist’s letter to the GP. Please be assured that these findings are not as scary as they seem at first. Valve regurgitation is a very common finding and many people will develop it to some degree in their lifetime and it will not affect their lives or how long they live. For some people it will progress, but that’s the purpose of repeating echocardiograms every few years if there is any sign that there may be a problem.
Please call the BHF nurse helpline if you are worried as these are the people who can best explain these findings.
Does not sound like a death sentence to me. As others have rightly pointed out most people have some degree of valve leakage especially as they get older. Not all valve leakage needs treatment. It depends on the severity. The only thing that would concern me is the use of flecainide to treat ectopics. That seems a bit extreme to me. Flecainide is one of the most potentially dangerous heart drugs and it 's normally used to treat AFIB not plain old ectopics. I would definitely get a second opinion on that.
The flecainide is to treat ventricular bigeminy. I expressed my concerns to the cardiologist but he said it has a high success rate for treating ectopics. I haven't got the prescription yet but I just want relief. I had higeminy now for over 5 weeks and its still going. When I had it earlier this year, it lasted for over 10 weeks. But apparently I'm fine
Its also incredibly difficult to get a second opinion. Firstly because of availability and wait time, but also because NHS doctors can't be bothered so another cardiologist would read the notes and agree with my current cardiologist.
Flecanide is sometimes prescribed for ectopics. (Ventricular bigemeny is PVCs occurring in a pattern of two together.) It depends on the overall ectopic burden and how well the patient can tolerate living with it.
I don't just have 2 together, I have hundreds and hundreds of them together. I'm now 6 weeks in to my latest episode. Constant runs, crazy high burden.
I’ve had long periods of trigemeny, and it was every day. They’re still a type of an ectopic beat, though. If your ectopic burden is very high then the Flecanide is probably worth a trial for at least a few weeks, especially if it’s disrupting your quality of life. You can have an ablation but I don’t know what the referral guidelines are, whether you would need to meet a particular threshold regarding your ectopic burden.
Unfortunately ectopics, whether you experience them as bigemeny, trigemeny, couplets, triplets, runs etc are not even considered an arrhythmia by many heart specialists and they don’t take action until your ectopic burden is particularly high. The question you need to ask yourself is what you want to do about them. You could pay for diagnostic test after diagnostic test, but where will that get you? If you have enough tests for anything, not just cardiac, you’re going to come across some results that are mildly abnormal or slightly out of range, but ultimately are of little significance in the here and now. If you are already anxiety prone, you’ll end up worrying yourself sick for no reason.
The question you need to ask yourself is what do you want to do about the seemingly constant bigemeny that you find so unsettling. There’s medication, which is on offer to you, or there’s the possibility of ablation — but bear in mind it may not be the one-and-done solution you might hope for. You could try all the usual “lifestyle” options before you decide to trial the medication that you’ve been offered, but you should always be looking after your health anyway, regardless of any diagnosis. There’s also the do-nothing option, which is also a valid decision, and not necessarily a cop-out. I know from experience that these types of irregular beat can settle down without explanation, although for me they do not disappear entirely.
I completeley understand ur anxiety following these latest results. I just wanted to say that I also got told I had trivial triscupod and mitral valve regurgitation in September last year and was petrified by this, However once my cardiologist explained that trivial means very mild and thst as we age it’s perfectly normal to experience this, it did reassure me. As others have said, it’s more about the severity of the regurgitation. As for the Flecanaide, it was originally suggested to me, but as my ventricular ectopics are multi focal and I have some scarring on my heart from previous myocarditis, they felt it unsafe to prescribe. Sorry for the long post
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