Anyone had experience of dilated cardiomyopathy or ARVC (arrhythmogenic right ventricular cardiomyopathy)?

[splishsplosh]

I've had occasional palpitations for nearly 20 years, but 1 had them almost every day for about a year a few years back, so went to the GP, and was referred to a cardiologist.

They've done various tests, never really told me much, then after dd was born told me to come back in 2 years. So I've been back, had a few more tests, and last week they told me they think I have either of these conditions. But it's not certain.

I'm pg at the moment, so that restricts what they can do, test-wise.

I'm not on any treatment, and they didn't give much advice, other than avoid stress, and seek help if I suffer any symptoms, and I have to go back in a couple of months.

But now I've been googling (silly I know) and feel more worried. It does seem to vary from sudden death, to not so much of a problem... anyway, I just wondered if anyone out there had any knowledge / experience?

splishsplosh, I would certainly ask about the likelihood of it being heritary. In my case I have a 50% chance of passing it on to ds, and had a foetal scan whilst pregnant. But I'm talking about HCM here, I know DCM can be heritary, I'm not at all familiar with ARVC. I don't want to alarm you but I think it's important you know.

During labour,(I didn't have an ICD then) I had a wire passed from my collar bone area into my heart, so they could periodically check the pressure chambers of my heart and to administer any drugs that might be needed, I had this in place for 3 days. I can't remember what the procedure is called, but I didn't have a clue that this was going to happen, and I had countless hospital appointments beforehand. I'm not suggesting this will happen to you, but I sure would have liked to have known about it beforehand.

Are you no longer having any treatment for your V'Ts? I would certainly want to know why this has been stopped if it has been.

I only know with regards to HCM and pregnancy, and most HCM sufferers cope with pregnancy and labour pretty well. But the main thing is they know about your condition and the possibilty of you having VT's, so without doubt you will be cared for and looked after really well, they will be well prepared.

Hi Dinny, yeh I feel great, I'm not really getting any problems at all, thanks for asking. So your dad did get an ICD then. I hope he's not finding it too much of a problem. Hope he's not had a kicking yet!!

so glad you are doing well!

yes, my dad had one about...8 weeks ago, he's just got his driving licence back!

he calls the ICD "his little friend" - v fond of it, can see why....

"his little friend" - yeh I like that, I've got pretty attached to mine

Last tiee they didn't monitor me at all in labour, I'll ask more about that next time.

I know they're wondering if it's familial, as they've asked about any relatives with problems, and as my sister has had a few symptoms, they've recommended she be referred to local cardiologist

They mentioned betablockers, but when I said I got wheezy, they just said, oh that's why you haven't been given them, but didn't come up with an alternative. I suppose since I don't get them that often, I'd rather not take medication, but if they do pose a serious threat when they occur, it would be better to have them controlled entirely.

Even though mine is a sporadic case, sadly my ds still has a 50% chance of developing it.

When I said foetal scan, I meant a foetal echo, perhaps you could ask about that.

I'm also on atenolol, that's a type of beta blocker and I've never had a problem with that type of medication, but I totally understand why you'd rather not take any medication yet if they feel it's not needed.