Right ventricular ectopics

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Hi all,

I've read a few posts on here and it's really reassuring to know there's lots of others in a similar position. 

I am very fortunate that the company I work for insists on medical checks, the particular day of my appointment an ex cardio specialist nurse took my pulse. He was concerned said I go to the GP.

Straight away at the GP surgery I was put on an ECG machine, then referred to hospital. I wore a holter monitor, did an excercise test and results showed I had two natural pacemakers meaning my heart was working at additional 26%. I had a an ablation which went really well and I've lived a normal life until now, that was 4 years ago, I was 25. 

Now 29, In March I felt funny again, heart racing at times, out of breath lots and really tired. I tried to ignore it and couldn't work out if it's in my head or is real. I went back to GP who referred me back to the hospital. My appointment was supposed to be last week but they cancelled it until mid October. 

I had so much riding on this appointment as I'm feeling worse and worse. In a meeting the other day, I was nervous of asking a question (audience 80+people) did so anyway and couldn't get my words out because it felt like my heart was beating in my throat. I'm supposed to be training for a tri, scared to train too hard, exhausted most the time. I look after myself, sleep well, don't drink lots, never smoked. 

I'm so frustrated the appointment will be 7 months since I raised at the doctors.

I feel like I'm putting my life on hold, I don't know how much excercise I can be doing, how hard I can be pushing myself. If it's real or if it's me being paranoid. If it's back again what does that mean. The technology is too new but I think mine is hereditary as my granny was an orphan at a young age, her dad died of heart attacks in their 40's, both her brothers also died of heart attacks at a young age. Lucky technology has moved on a little. If I didn't have the initial appointment, I wouldn't have ever known so I'm lucky in some sense but still so worried in the other. 

Any advice? 

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  • Posted

    Hi T, I want you to go back to that Dr and insist to see a EP cardiologist. You have a strong family history of heart problems. Any Dr worthy of his diploma will make sure you get seen quickly. It does not matter if this is in your heart or just in your head, it is taking your quality of life away from you!! If he won't do it, change Drs. I don't know where you live, but I hope you do not have socialized medicine, as I know they make you wait sometimes till a small problem becomes a huge one! Technology, has jumped leaps and bounds, I would hugely recommend you get back and make a ruckus till you get seen! The squeaky wheel gets the grease!!! Let us know how you get on!! God Bless,Mabel

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    • Posted

      Thanks Marbel much appreciated. I think I need to shout and stamp my feet a little louder. I'm twickenham based so hopefully this isn't an area for socialised medicison. 

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  • Posted

    I take that you are in the UK. Make a private appointmet to see an EP. If urgent he can refer you back to the NHS. 
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  • Posted

    An EP is a Cardiologist who specializes in Heart Rythmns. Thats who you want first I think! The other ones are plumbers! But, if the EP doesn't find anything, then the plumbers come in!!! Take care!!

     

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  • Posted

    An electrophysiologist who specialises in the hearts electrical system. A bit more expert than a cardiologist in heart rhythms and atrial fibrillation and does ablations etc.
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  • Posted

    I had an NHS MRI scan due to my Ventricular Tachycardia, they think I might have Arrhythmogenic right ventricular cardiomyopathy, which "usually presents with symptomatic arrhythmias or sudden death".

    The MRI was last December, first appointment with the heart failure cardiologist was in June, this was to get my family tree, next appointment, which I hope will be doing something to save my life, is this coming December. The NHS is a trifle busy these days to be seen quickly, even if your life is at stake it seems.

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    • Posted

      If they thought that you had ARVC and were about to croak you would have been seen to quickly. As one cardiologist said to me , Our job is to keep your heart beating. What did their letter to you and your GP actually say by way of diagnosis ? 

      Does your family tree have any people who have had it and if so did you have any genetic testing? You can always pay to see your cardiologist privately and speed things up. It is usually about £160/£180.  

      https://patient.info/doctor/arrhythmogenic-right-ventricular-cardiomyopathy

       

       

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    • Posted

      On the MRI report, there is a list on the left with things like "Patient", "Height", "weight" etc, further down this list has something that says, "Indication name", this is then filled in with "arrhythmogenic right ventricular cardiomyopathy", next on the list it says " Protocol Name", This then says ARVC.

      When I saw the Cardiologist for the first time in June, I actually asked him if they thought I might have ARVC, he replied, "yes".

      I have had relatives die from heart disease, but not ARVC, but the cardiologist wasnt aware of this for the six months between the MRI and the first appointment.

      I have been seen much quicker by arrythmia doctors regarding one of the symptoms of ARVC, namely, Ventricular Tachycardia. Whilst an ablation seems to have curtailed my VT, I am rapidly going downhill regarding other symptoms such as breathlessness and exhaustion.

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    • Posted

      Further to the above, on reading your link it mentions "left atrial enlargement", my MRI report states :- ATRIA

      Left Atrium: 26cm2 (normal value 24 cm2)

      Right Atrium: 28cm2 (normal value 22 cm2)

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    • Posted

      Even further to the above, your ARVC link says the about the ECG :- "ECG - the most common findings are ventricular arrhythmias with left bundle branch block (LBBB) morphology".

      Well, I have the ventricular arrhythmia, though now prevented from forming VT, as for Left Branch Bundle Block, though nobody has told me this, have a look at my ECG below and compare to an ecg of LBBB.

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    • Posted

      You had the ablation since the MRI scan?

      Any meds that could cause breathlessness such as Bisoprolol or Amiodarone?

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    • Posted

      Yes, In April I was taken to hospital as my VT had lasted 12 hours!, they gave me an ablation then.

      Beginning of January they put me on Bisoprolol, right away I reported feeling like a drunk zombie and that my lungs were not working. They took me to hospital when my heart rate dropped below 40 and put me on Solotolol instead, this right away gave me a coughing frenzy, my GP told me to stop takeing the Solotolol which I did, though the cough reduced, I still have it now four months since not being on Beta Blockers, I also have the breathlessness and the foggy mind still. The medical profession refuse to belive I can still be affected by beta blockers, my GP has therefore given me an asthma inhaler which has a very limited efffect. I now have an appointment for a lung function test.

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    • Posted

      If you ask Wikipedia 'Left Branch Bundle Block' it comes up with information on the ECG

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    • Posted

      Yes, thats where I saw the ECG image that looked nearest my post ablation one above.

       

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    • Posted

      My records are now marked Bisoprolol and amiodarone intolerant. At the time it was difficult to know if it was AF or medications causing my problems. During that time my left foot became heavy or numb and that has not gone away athgough the rest mainly has.. Of course that is put down to an unknown neuropathy or even CMT.

      I have at various times been offered an RF ablation, an  AV node ablation (I have a pacemaker) and more recently a cryoablation,

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