Mitral valve prolapse

[Welshbird123]

I found out that I had mitral valve prolapse just before a minor operation back in 2016, for years I had palpitations and SVT which I had an ablation last September 2023. I have had my valve checked every year and it seems moderate. I have been experiencing breathlessness,pressure in chest and lightheaded,my blood pressure drops very low . I feel this is affecting my independent every day life and am not sure if it’s my valve or the SVT operation I had in 2023 for my SVT. I do not go to my GP unless I really need to and will see him in one week. I am 77,very active and independent. Joining this site gives me reassurance that I am not alone.

[SlothOnSpeed]

Hi Welshbird134, I just saw your post. Did you get any feedback from your GP?

Kind regards

Ellie

[Welshbird123 in reply to SlothOnSpeed]

Hi! The GP referred me to the hospital and I was given a 24 hour monitor which is no use at all because it does not pick up my low blood pressure and the high blood pressure I get when I,m asleep. I get good days and bad days and my mitral valve is checked every year but it doesn’t explain why I,m getting the other symptoms. Greater London is a very bad place to live because our hospital is overwhelmed and due to this we don,t get the care we need because not enough doctors and nurses are available to cope with the volume of people now. I am due a telephone appointment in a month and hopefully another scan on my mitral valve. Sorry I was late answering you.

[Autumn_Leaves in reply to Welshbird123]

Do you get palpitations of any kind? I seem to have random strong beats, which are not ectopics or arrhythmia. I do have those too, so it’s very frustrating trying to explain this to GPs and health professionals. They will order a 24h ECG so of course they’ll pick up ectopics but this isn’t the problem I’m trying to explain to them! I have had these strong/popping/pushing/pulling “regular” heartbeats but there’s no arrhythmia showing on my Kardia when I feel them so I’m fairly confident these are not ectopics. Like you, I have mitral valve regurgitation which has progressed from borderline to mild/moderate plus left atrial enlargement, alongside worsening ectopics which where the forerunner to AF. Also like you, cardiac appointments are so rationed in London and they can’t shoo you out the door quick enough. Do you mind me asking which hospital you go to? I’m under KCH. The demand is so high and it seems that once they deal with emergencies and urgent cases, they’re so close to full capacity that everything else is referred back to GPs. Some months ago I tried explaining my symptoms to a locum nurse on the phone at my GP practice only for her to yell at me saying “there’s nothing wrong with you”! I had to point it out to her that I was actually diagnosed with AF. I don’t even think she bothered reading my notes! I have a feeling my valve issues may be progressing but how do I know if it’s that or something else if they don’t investigate? I am seriously considering booking a private consultation at this point.

[Welshbird123 in reply to Autumn_Leaves]

They should not speak to you in that way,one day they may be in the same boat as us! Yes I get all sorts of funny beats of my heart, sometimes quite alarming and during a visit to A and E recently it was not picked up on the ECG even though I felt my heart missing and doing crazy things. My hospital is Queens hospital in Romford gtr London, I spent 12 hours there recently sitting on uncomfortable hard chairs. Apparently my mitral valve is still ok so I just got to put up with the lightheaded feeling the breathlessness and be glad I am still alive at 77 and independent. They should check your valve every year,now mine is every 6 months.

[Autumn_Leaves in reply to Welshbird123]

I’m glad that nurse was a locum but I’d never experienced the like before. I told her I wasn’t going to be spoken to like that and ended the call. In 2021 the consultant I was referred to for ectopics suggested I have a repeat echo to monitor valve changes every 2 years. That was before my first episode of AF. He was a very good consultant and referred me to the arrhythmia clinic, and by the time I had my appointment I’d managed to catch the AF on my watch. You really have to be your own advocate. I’ve contacted the arrhythmia nurses about my non-irregular palpitations but they say that unless it’s not showing as an irregular rhythm on my watch or Kardia, I have to go back to the GP. And doing just that was how I encountered that awful nurse. I’m not due another echocardiogram until June next year and I think I need one much sooner. So I’m a stuck in a merry go round that’s going nowhere. That’s why I’m considering a private consultation. My experience of A&E has been similar. Last time I was booked in for 8pm by 111 and didn’t leave until 6am. It puts you off going at all.

[BorderCollie2024]

You're not alone! I've found this site very helpful and reassuring. I'm 4 weeks post op, and I think I'm doing quite well. But I do feel a bit trapped at home, a bit bored and fed up , usually I am very active, walking my dog . It all takes a bit of getting used to. I hope you get on OK with your GP, don't very frightened to ask lots of questions. Let us know how you get on