Subcutaneous ICD

[ToriP02]

I've just come across this forum and wanted to see if anyone had any advice or knowledge on having a subcutaneous ICD fitted. Particularly the effects on a young (ish!) female. I've been aware of my condition for a long time and have always managed it fine with no real effects after some initial issues in my teenage years, but I'm feeling a little frustrated and angry about the loss of control, the impact on my life, any future relationships, clothes to wear and all sorts of different things! Any thoughts or advice would be welcomed. Date is set for 2.5 weeks time now and totally out of the blue for me this year.

[RufusScamp]

I had no problems with mine, although I am possibly a little older than you! You will not be offered an ICD unless it is thought it would be good for you.

[Bigbrian]

Hi, once it’s fitted you will ignore after a while, I’ve had mine for 2 years now and rarely think about it. If it’s being fitted they think you need it, look at it as a built in paramedic onboard.

[sturon]

Hi.

Welcome to the forum. My husband had an S-ICD implanted 4 years ago. He has long QT Syndrome and had two cardiac events so the S-ICD was fitted both to monitor his heart and also just in case treatment shocks were required. He was apprehensive at first but now the only time we ever talk about it is once a week when he does his download, when I am cooking as we have an induction hob and when we fly as he gets special treatment at security.

There is a small lump on his side but you really can't see it that much.

We see this as his 24/7 paramedic always looking out for him.

Your local hospital may have a support group for patients with implanted cardiac devises, ask if one is set up and perhaps attend the first one to see if it helps to meet others with implants.

You may find this site helpful.

bostonscientific.com/en-EU/...

All the very best.

[ToriP02]

Thanks for your help and thoughts so far. Having been aware of my heart condition for a long time and going through both my brother and my dad suffering, I am aware of the overall pros and cons, plus my cardiologist is bloody amazing! It's more the day-to-day things/difficulties I'm interested in, for example I've been through a study of women with S-ICDs and one thing to be aware of is placement, as many women couldn't wear bras after if placed on the bra line. Small things perhaps, but something I'm glad I'm aware of now.. I think I'm a bit of an anomaly though as there seem to be very few women my age with an ICD!

[Alison_L]

Hi Tori. I have an ordinary ICD and was 56 when it was fitted. I had similar worries about how visible it (and the scar) would be, and how comfortable it would be with a bra. Obviously my ICD is below my collar bone, so it was the strap, rather than the main band, of the bra that I was concerned about. A friend with her own heart problems gave me a bit of advice - although there is an optimum place for these devices, there is a little "wiggle" room. So, rather than having the standard horizontal scar under my collar bone which would be visible every time I wear a lower hanging top, I have a vertical scar which is directly underneath, and completely covered by, my usual bra strap. The "lump" of the ICD under my skin is barely visible - they tend to be more obvious in men, who generally don't have the same layer of fat that we do! Obviously, your device will be under your arm, but do discuss your worries with the consultant and/or a cardiac nurse. Although you're younger than the average female cardiac patient, the team will have seen many similar young women, and they will know where to put the device so that it is comfortable for you, both physically and mentally. All the best xx

[ToriP02 in reply to Alison_L]

Thanks so much for your message and thoughts Alison. I have an appointment with the nurse next Tuesday but wanted to see if anyone has actually experienced it themselves and so this is definitely helpful so thanks so much for taking the time. I'm one of the only young (ish) patients my cardiologist has and so he's amazing and really passionate about young people and getting them checked for heart conditions but doesn't personally know lots of them! I've decided I'll probably draw a line and get someone to write on me where my bra goes! 😂😂

[Alison_L in reply to ToriP02]

My cardiologist gave me a pen and said "mark where your bra strap goes". I did, and my scar is right in the middle of where I drew the tramlines

[ToriP02 in reply to Alison_L]

That's amazing! I didn't know that at all and thought I'd be a nightmare trying to force them. Thank you!