I am very new to heart problems and really appreciate any guidance on how to make sure people are aware of my condition if they need to be and I can't tell them...
I had a (still unexplained) cardiac arrest out of the blue on 3 April and an ICD, with pacing and shocking functions, fitted on 20 April.
I have been told that I need to carry an ICD info card everywhere with me. It's a peice of A4 paper that folds down . As I am very new to this, I'm not sure if this is what everyone with an ICD has, and if the having it on me all the time is due to my investigations being ongoing at the moment. I am also still recovering from memory loss from the cardiac arrest so may have got some info confused😕
Now I am getting back on my feet, I am starting to wonder how practical this card carrying is actually going to be. I'm a 20 something woman - most my clothes are pocketless, or have pockets considerably smaller than the card! I also love sports and plan to be back to swimming on the beach this summer - pending medical all clear
I am aiming to carry on with as much of my previously active and independent lifestyle as possible. I am very lucky that my consultant says I should be able to do this in time. I'm just not sure how realistic it is to hope that someone would actually check my handbag for the card if I became unconscious while out, or how I should handle this when I start being more active again.
I would really appreciate others' views. Is medical alert/ID jewellery a good solution? And welcome any other tips on this issue.
Thank you!
June edit: I got the bracelet shown in the photo attached from Celtic Shore via Etsy.
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Alice_Ro
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Hi Alice. I’ve had 3 cardiac arrests in the last 5 years. I always carry the medical card with me & I also have a medical ID bracelet. You can get them with 6 lines of info on the tag which is enough for everyone. I get some comfort from having the ID as my cardiac arrests have come out or the blue with no warning so having the ID bracelet for me is a sensible move. I hope this helps you make a decision.By the way I had an ICD fitted after my 2ndcardiac arrest.
Thanks Roger. This is helpful. I'm sorry to hear that your cardiac arrests have been so persistent, but it's good to read on your profile that the ICD fired effectively. If you don't mond sharing, what information do you have on the bracelet?
I do carry my card with me, folded up in my purse. I have been asked to show it in the airport before and doctors have looked at it a couple of times. I have all my medical info stored on my phone, which has an ICE bit on the home screen. I was advised to get medical alert jewellery when I got my device, but when I spoke to my consultant about it, he agreed with me that it wasn't necessary. Your ICD doesn't pose a risk to anybody and all first aid treatment would be given much the same regardless. I think go with what makes you comfortable with jewellery (I can imagine it could be reassuring) and carry your card when you can, but don't worry too much if it's not convenient. When I'm swimming or in the gym, my card would be in my locker, I don't have it about my person at all times. Definitely take it if you are travelling abroad though.
Do you have a phone number to speak to your consultant/cardiologist? I'm sure it's pretty common to have questions after the fact.
Thanks Laura. I don't have a direct contact for the consultants, but I do have phone numbers for the device clinic and cardiology nursing team. The cardiology nurse and my GP both said it was up to me on whether I opted for medical jewellery, which is why it's great to get tje views of people with similar experiences.
Everyone incliding the cardiology consultants emphasised that the essential thing was to keep my card with me at all times. Your answer on how you manage this at the gym/swimming is very helpful, as I didn't think through the practical challenges of this when I was in hospital.
I think I will get a bracelet for reassurance now and may decide later that it's not essential all the time.
I have a medicalert bracelet but that is because in addition to my pacemaker I am also on warfarin and have no spleen, so for me it’s essential. I also carry paperwork in my purse regarding all three.
Do whatever you feel comfortable with, not everyone likes wearing jewellery, especially when it has the alert logo on it, but I’ve always worn bracelets so not a problem for me - just silver now instead of my usual leather.
You must have a million questions after what has been a life changing experience.
My partner has a condition called long QT Syndrome and suffered two cardiac arrests in December last year. These happened out of the blue. Like you he had an ICD implant (his is an S-ICD as he didn't need the pacing function). We are now five months on and life is very slowly returning to 'normal'. His device card is a very small paper one which fold up into a plastic wallet the size of a credit card. He carries it with him most of the time. We looked at emergency jewellery but he decided he didn't want to get any. I think it's a matter of personal choice. We have taken a photo of the device ID information and that is stored on my phone, which like most folk, it never leaves my side!!
All of this is very new for you and your attitude to returning to an independent and active life is a great way to look at the future. With the ICD implant you have your own paramedic with you always.
Our local cardiology service runs a support group for ICD patients. The group meets twice a year and it is a good opportunity to meet others and exchange ideas. You might check if your area has one. We have also found the BHF nurses can often help and give advice.
Thank you for the helpful reply Ron. As per above, I think I am going to give the jewellery a try for a while - even if I can't see any to my personal taste 😔 , ha!
I am also definitely going to see if I can fold my card into a credit card size. Mine is printed on card and for some unknown reason I assumed I had to keep it in the quarter of A4 size and wallet it was given to me in. Perhaps because it's such an improtant document I was thinking of it like a university degree certificate or something that must be maintained in its exact immaculate state to be valid!?!
I like the idea of storing the info in my and my partner's phones too. Thanks.
I've signed up for my local ICD patient support group and looking forward to the first meeting in July.
Like every illness or body mishap,then it is a case of time being the best healer! (of course with exercise and sensible diet help)
I had an AVR and double by-pass back in Oct '15.
The first thing I did on returning home, due to the fact i am now on warfarin was get a Medi-tag.
My tag has: my name: my AVR: states I am a warfarin user and quotes my CHI number
Alas, I have used it three times, on admission to A & E, and it really helps with quicker admin etc.
The main reason was obviously to draw attention to my medical condition should I be in an accident and I take great comfort in the peace of mind it gives.
20 weeks after my Op I was able to go on holiday to Thailand no problem at all (okay travel insurance was high)
I have a dog tag for normal wear and sports tag for things like swimming, snorkeling etc.
The tags and bracelets come in all shapes, sizes and cost. And can ever have a micro chip included or an active 24/7 call contact/website that can give the emergency services your number.
Sorry sound like a salesman which I am NOT just have experience that it has helped a fast response when needed
I am surprised that BHF haven't teamed up with a supplier (commission for the charity ) Given that they promote travel insurance sites (unless I am missing something)
All the best with getting on with the rest of your life and hope this helps
Hi. I have two medic alert bracelets for my own peace of mind. One is a Links sweetie style bracelet so goes with all outfits, the other is a sport band that I wear in the gym and for swimming.
I have a pacemaker and am on anticoagulants so just find it reassuring to wear the bracelet. I always show my pacemaker card when going through security as I can't go through the normal scanner. These scanners are getting more common at tourist venues as well as at the airport but I've never had a problem
I wear 2 Dog Tags - 1 with cardio information, the other with Diabetes info. Looking around you will see a myriad of different styles and some have prices to suit. I'm considering adding a USB one.
Hi Alice, I’ve had 4 Cardiac Arrests, I have non epileptic seizures, anaphylactic reactions to foods and medications, almost 40 surgeries and a the usual partridge in a pear tree 🌳. I use 4 controlled drugs including Fentanyl 100 and about 30 odd tablets and capsules
The most useful one is the Health ID on your mobile phone. It has spaces for everything and your Next of Kin or Emergency contact can just be tapped from there and the call is made. A paramedic showed me how to sort it out (I have an iPhone) after I was pumped full of epilepsy drugs when I had a seizure. It was terrible; people were coming out of the walls and closets 😂
Visual hallucinations. You don’t need a password; its next to Emergency. I would need a whole Andrex roll to write on. We always have our phone and they look out for it. Hope I helped.
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