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Topic: New ARVC Diagnosis (Read 799 times)
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Gemma
Newbie
Posts: 2
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Hello,
Today I have received a diagnosis of ARVC, I can see that this message board may be invaluable in the future and thought that it would be good to introduce myself and maybe ask a couple of questions.
I was diagnosed as my father died 11 years ago suddenly at age 42. His ARVC was diagnosed at post mortem. I didn't realise his cause of death until April of last year which is when I started to get investigated. It seems that I am likely to have inherited ARVC and at the moment have micro aneurysms visible on a cardiac MR and also a slightly dilated right ventricle. Interestingly my fathers ARVC was predominantly in the left ventricle. I have had normal ECGs, holter tests and stress tests, and am due genetic testing soon.
I went to see my cardiologist today who suggests that it is unnecessary to prescribe prophylactic drugs, such as beta blockers and the main course of action at the moment is to monitor me.
I am worried, as I am aware that some people’s first presentation of the disease is sudden cardiac death, I am concerned that my first arrhythmia may be the fatal one. How do people who are not being medicated or treated cope with this situation?
Also I am a little confused about some terminology. On my ECG and holter monitor my doctor says he is looking for extra beats or arrhythmias which may indicate the disease. However he then says that when I do get an arrhythmia I will know about it as they are sudden and noticeable. The arrhythmias that he is looking for on the ECG, are they the same as what could cause SCD? Or is he looking for minor ones that may indicate I get a major one in the future?
I guess I am just looking for reassurance and other people who may be in the same boat. I see on here there are quite a few people with ICDs and beta blockers, are there some people who are just being monitored like me? Do you think being monitored may make it less likely that I experience SCD? At what point in disease progression are people normally medicated or fitted with an ICD?
I know that I am lucky that I am asymptomatic but am finding this 'waiting for something bad to happen' excruciating!
I was also thinking about getting pregnant in the future, has anyone experience of pregnancy with an ARVC diagnosis?
I look forward to becoming part of this useful and friendly community.
Best wishes,
Gemma
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Deefib
Newbie
Posts: 3
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Hi Gemma,
I have ARVC and was diagnosed three years ago at the age of 40.
They diagnosed ARVC because my older brother died at the age of 19 suddenly (I was 14 at the time) and I had started to experience palpitations when in the gym. At first it felt like a heart attack because of the pain in my chest, but the pain went away very quickly, it was the racing heart or 'palpitations' that I was concerned about and went to see my GP.
So, because of the symptoms and my brother dying suddenly, they diagnosed ARVC.
Because I am high risk they also fitted an ICD which at first I struggled with the idea of having one and they prescribed Beta blockers. Now, I'm happy to have the ICD, in fact I really feel more secure knowing it's there.
If your doctors feel that you are at risk then I'm sure they would talk to you about an ICD as well as beta blockers.
Regards
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