Cardiomyopathy - does anyone know anything abouj it?

[cardiomyopathyworry]

Relative (my uncle) was diagnosed four years ago with ARVD, treated with an ICD . Something to do with damage to heart cells that gets worse with exercise . He’s had genetic testing and no gene found - so they can’t do genetic testing for anyone else . So no way of knowing which of his huge family have it without screening - and hospital said even if eg, one person doesn’t appear to have it, their children might and might not know about it until it’s too late . Gene doesn’t do exactly the same thing with each of us or something .

My mother - his sister - now has to have screening 2-4 yearly for this, eg has an echo, ecg and treadmill test . No signs of problems with her yet, touch wood, she’s 55 . Hospital said she’s at especially high risk as are uncle’s children .

I’ve had palpitations since age 12, I’m now 30 . GP is confident it’s anxiety however I’ve been seen by cardiology twice now - once for a 24 hour tape, then for an echo, treadmill and 72 hour monitor . Both times told benign PVCs and tachycardia. I’m incredibly anxious about it all and often very scared I’m going to collapse . I get PVCs often if I’m stressed, angry, nervous, really exerting myself or excited .

I’ve now been referred again, to familial arrythima clinic and told to except regular screening or something . Not sure if they think I have it or if they’re trying to reassure me - hospital weren’t very clear in their letters.

Googling tells me I shouldn’t be exercising just in case but I’m worried ... it says if I have the condition I’d be told I can’t do more than a slow to brisk walk eg no swimming, running, etc (my uncle‘a certainly been told that, he can’t ever go to a gym again and I think his kids been told same - no aerobic exercise at all) ... so should I be following that now just in case ? Eg I shouldn’t laugh too hard at something or run up the stairs or something ... I’m wide awake at night once again worrying in case I die in my sleep, I’ve had this worry now for at least ten years and I’m sick of it iyswim . I restrict my life hugely because of it - I don’t exercise much and I don’t go out alone in case something happens . Just want to be told I’m fine and nothing to be concerned about .

I have dilated cardiomyopathy with a genetic link.
Have you been in touch with Cardiomyopathy UK? I found them very useful when I had questions in addition to seeing my GP and a cardiologist. There is a live chat function on their website where you can talk to a specialist nurse. British heart foundation might also be useful.
Have you seen a cardiologist?

OK Cardiomyopathy is thickened heart muscle, it can have various causes and it is the cause that is treated.

It can be congenital - ie is there at birth but mostly is a result of the heart working harder than normal. 1 in 1000 women develop it during pregnancy, most long distance runners have a form of it.

Everyone gets PVCs occasionally, most people are not aware of them, some people can feel them. They are nothing to worry about unless they come in runs.

Step away from Dr Google.

What you need to know is what kind of cardiomyopathy your uncle has and the underlying cause (if any).

If it is (and from what you have written seems to be the case) a form that has a genetic component then you will be offered ongoing monitoring, which is the most appropriate thing to do.

The echo will measure the thickness of the heart muscle, this is important as you can get 'obstructive cardiomyopathy' where the muscle is so thick it obstructs the blood from being pumped around the body, this is the form where you are advised to not exercise.

The 24/48/72 hour holter monitor records your ECG for that length of time, the physiologist will analyse it and write a report.

The treadmill test looks for changes in your ECG on exercise (and usually your BP).

All these tests can only show what is happening, they cannot predict the future.

Think of it like this, say your family has a bone weakness that means they break bones more easily than others. A routine X-ray would pick up any small fractures you had not notices but you wouldn't be treated unless you actually broke a bone.

So the cardiology department cannot predict your future, but they can monitor you.

I have arvc diagnosed late 30s. I've been told that most people don't get diagnosed until later in life as they don't show any symptoms until then so I think that your palpitations having started very early is a sign it's probably not arvc causing them.

Regular screening is a good thing- it means that as soon as they see any slight damage to your heart they will get you on heart protective drugs. Women with arvc live to on average mid 70s which isn't far off normal.

In terms of exercise I've been told to exercise to a level where I could have a conversation. So certainly doesn't preclude swimming or gentle jogging. I wouldn't do HIIT but other than that you can do cardio. I don't have an ICD yet and they haven't advised me against exercise.

I know what my triggers are for palpitations- alcohol,caffeine, stress and annoying quite a few foods which I've developed an intolerance for (unrelated I'm sure) so I've really cut down.

I would focus on trying to help yourself with your triggers, keep your weight healthy (I've just lost 2 stone which is a huge relief) and go to your regular screening and I'm sure you'll be fine.