Females with ICD: I was diagnosed with... - British Heart Fou...

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Females with ICD

YogaAtHeart profile image
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I was diagnosed with ARVC earlier this year, due to the amount of scarring shown on my MRI I have been told I need an ICD fitted.

I'm so so nervous about it all, I'm also concerned about how it might look, I'm a 26 year old female and am reasonably fit. I'm wondering if any other females that have had one fitted can give me some insight? and whether many people have had the ICD fitted under the pectoral muscle and how that affected the surgery.

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YogaAtHeart
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laura_dropstitch profile image
laura_dropstitchHeart Star

I had my ICD (actually a CRT-D device so includes ICD function but maybe different shape/size from standalone ICD) and it's a lot less visible than I had feared. I have a scar, about 2 inches long, and otherwise the casual observer probably wouldn't ever notice it was there. I am slightly overweight though, which does probably hide it a bit. I posted a photo on my heart-related Instagram if you want to see it - instagram.com/p/B8yobsEgbG6...

In terms of activity, there is a period of the device settling in, physically and psychologically, but since then the device hasn't restricted my activity at all and I can usually forget all about it.

Happy to answer any questions you might have, so just let me know. @alice_ro might be able to help too? She's a yoga-loving ICD user.

YogaAtHeart profile image
YogaAtHeart in reply to laura_dropstitch

Thank you for your response, yours looks very subtle! How long after the procedure was this photo taken? Is yours under the muscle or the skin?

I'm relieved to know that your device doesn't restrict you, I'm so nervous about the whole thing.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to YogaAtHeart

This photo was taken quite recently but, to be honest, that's how it has always looked - since the scar healed anyway.

Mine is under the skin. I can feel its shape/outline really easily but it doesn't show much at all. I do think that varies quite a bit depending on the amount of fat you have, however.

You have to be super careful for at least six weeks after the procedure (no heavy lifting, hoovering, raising your arms above shoulder height) until the leads are secure but after that it shouldn't prevent any activities. There are a few electrical devices that can interfere with your device (convection hobs?) but my consultant's advice about that was basically not to lie on top of the microwave and that level of care has served me well so far! No need for major life changes.

I'd say the psychological adjustment is the biggest thing. I struggled with that initially (felt more vulnerable than I had without an ICD) but now I equal parts love/don't think about my device.

I once shared a whole load of links to ICD experiences. Will see if I can find the comment where I posted that and send you a link. There are loads of females with devices on this site and generally their experiences are very positive. Back in a mo with those links...

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to laura_dropstitch

healthunlocked.com/bhf/post...

There's a comment from me (about 11 comments down from the top) on this post, with links to previous threads about ICD experiences.

YogaAtHeart profile image
YogaAtHeart in reply to laura_dropstitch

Thank you so much for this, and for also sharing your positive view on the whole thing, it really does help with all the emotions and for not feeling so alone with it

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