Life changing event

[imy1213]

Hi evry1 never done anything like this but im new and needed to do it, i had sudden cardiac arrest in jan 2020 and was told due to that i have damaged 30% of my heart and need an icd as it could happen anytime, i was in denial and hoped it would get better even though my consultant told me it wouldnt and now i have decided to get 1 for my family sake, i have 4 kids and a wonderful wife who saved my life ,i owe it to them but at same time im so worried!!

[Darcy2000]

Sorry but what is an icd

[imy1213 in reply to Darcy2000]

Hi its a implantable cardioverter defribillator

[Milkfairy Heart Star]

Hello imy1213

Welcome to the forum.

There are quite a few members who have had an out of hospital cardiac arrest as well as having an implantable cardioverter defibrillator (ICD) fitted.

I am sure they will be along soon to share their experiences with you.

[imy1213 in reply to Milkfairy]

Thank you

[EmmyLaury12]

Welcome to the forum x

Like Milkfairy has said I’m someone on this forum will talk about their experience .

It helps too to know others have gone through a similar experience and are now doing well . It all helps massively to ease the anxiety.

I had HA in April

2020 -one stent now happy to say doing well .

I’m sure you will too x

[SpiritoftheFloyd]

Welcome to the forum.

I had a heart attack in December 2018, and while I was about to get a stent went into cardiac arrest. The consultant suggested that I have an ICD as a precaution in case I had an arrhythmia in the future.

I posted a note on the day of getting the ICD fitted shortly afterwards, link below. I was a bit concerned about the procedure, but on the day I was fascinated about the whole process. If you have been offered an ICD, I'd absolutely go for it, as it was put to me - if you have another arrhythmia that causes a cardiac arrest, you probably won't survive it, the ICD will allow you to survive it! As far as I'm concerned, a no brainer.

healthunlocked.com/bhf/post...

[imy1213]

Thank you for the replys , much appreciated and it does put my mind to ease, ive avoided it long enough and i never know whats around corner so im more for it now , it will ease my anxiety which ive never had before .

[Yass_123]

I have similar situation to you had ha four years ago last year gp told me same as you I too try to avoid saying I need a icd due to fear I read many posts here saying how their lives improve I want to do it but there is a sense of fear even though cardio say need it I really be grateful if you let me know how u are wishing you best

[imy1213 in reply to Yass_123]

From playing 5 a side football and being 1 of the fittest to having cardiac arrest and then being told i need an icd has changed me totally, i keep asking myself why ! I keep saying to myself it was only a 1 off freak accident but i guess ill never know and its taken me a year to almost come to terms with it and reality is settling in , taking all meds is also a mission but ive been told there very important aswell.

[Ashph]

Hi,

I don't normally post on here - although reading what others say can be really helpful. However, I'm in a similar situation to you (I didn't get as bad as having an SCA, though). When I was told, in a very matter of fact way, that I'd benefit from an ICD, I went through the shock, and the anger, the feeling that it was a mistake, or shouldn't be me, or was unfair, etc. ... I'm sure you know what I mean.

I've come out the other side of that now, and figure it's better to have it and maybe not even need it than the other way around. I've got a young family and want some extra security that I've got a good chance to be around for them well into the future. Now I'm not frustrated at the possibility of having to have it, I'm frustrated that I haven't got it yet!

[andy110519]

I had an SCA May'19 having just finished the local Park Run. I had OHS the following week to replace my aortic valve with a mechanical one. I hadn't known there was anything wrong with it. I was able to complete a 5k within about 10 months of surgery and ran 100k last month.

There's a closed group on Facebook, SCA UK, that is for survivors of SCA and a lot of them have ICD's so not unusual for survivors. They are part of SADS and have a lot of information for those such as us, definitely worth a look.

Good luck.

Andy

[Thanksnhs]

Hi I had heart failure and got an Icd fitted, It gave me much more confidence to go out do things especially on my own and also when I was abroad, I felt it was a bit like an insurance policy, there when I needed it,as I live alone I felt so much safer, after the first few weeks I never even noticed it was there, it was just part of me, I was very glad of it, It fired once when I was sleeping and I never even noticed, I had a home monitor and I only found out when the hospital phoned and told me that it was an appropriate shock and it did save my life as my cardiologist pointed out, I wouldn't hesitate to get one fitted, I hope you are keeping well at the moment and if there is anything you want to ask just message me, take care char

[imy1213 in reply to Thanksnhs]

Thank you much appreciated and reading all the advice and experiences people have had makes me feel so much better , i have been isolated and alone since it happened , cardiac rehab was going to start in april 2020 but got cancelled due to covid so feels like i was left to recover myself, thank god for my wife and kids they made a big diffrence but now lockdown is gonna be over im more worried how im going to cope seeing people again, socialising , and i know i will get questioned about what happened to me which will bring back memories and the anxiety will increase 10 fold .

My heart seems like its racing now whilst talking about it .

[TATAM]

Hi

I'm also new to this but have found great comfort from reading all the support that these hearties give to one another. I have learnt so much from them all!

I had HA 2 stents EF <35% in August 2020 , came as a massive shock as very fit, gym classes 4 times a week, cycling, walking at least 3 miles a day, healthy diet, no smoking, no hereditary history of heart problems! I suffered from severe anxiety afterwards but coming out of it now after 6 months of following Cardio teams advice. So grateful to paramedics and hospital for saving my life! I too have been advised to have icd which hopefully will be soon.

You will get through this and think of the icd as a backup helping you to live life to the full and enjoy your wonderful family.

Good luck.

Tatam

[Hidden]

Morning , my husband had 2 cardiac arrests a week apart last July whilst in hospital recovering from mitral valve surgery. He had an ICD fitted. It was a very steep learning curve as I was 250 miles away in our home whilst he was in hospital, covid rules. The consultants were amazing , phone call chats over a period of two days so I understood and could help my husband, directed me to web information I could read. The procedure to fit an ICD lasts about 45 minutes under local anaesthetic. Once home you have a monitoring device which send the ICD recordings down the line to the ICD monitoring team in your area. You don’t need to do anything. My husband can feel his and see it move as he is extremely underweight. It doesn’t hurt and after a few weeks we got use to it. He had it fitted as cardiologist couldn’t predict if he would have another cardiac arrest, his heart rate was very erratic, and survival rates from having a cardiac arrest are slim , even in hospital. We see it as my husbands personal life insurance gadget now.

His ICD team is based 130 miles away due to our remote location, they gave plenty of phone call support at the beginning, then he had a four month post op appointment, now it will be every 9 mths if nothing untowards is detected.

It did impact on him surrendering his drivers licence for 6 mths but this was cardiac arrests and ICD being fitted, so I’d check the rules if you are driver. He is applying for it to reinstated as he has passed all the rules set by DVLA regarding his ICD not triggering, so no cardiac arrests during 6 mths.

Cardiologist wouldn’t recommend it if they didn’t feel it was necessary, it is a long term investment by the NHS but you stand a better chance of surviving a cardiac arrest with it fitted.

Other things to be aware of are, if you are a welder you need to check that out, stay 6 inches away from an induction hob, microwave and keep mobile phone away from your ICD. Airport security you let them know so they stay away from it.

Please don’t be scared about it , procedure is quick, recovery is too and after a while you see the remote control panel as just a friend sitting there in the background.

Hope that helps ..Good luck

[jowalk6]

Hi imy. I had an out of hospital cardiac arrest in 2014. I have 3 sons and my middle one gave me CPR until paramedics arrived. After 9 days in an induced coma and a month in hospital I was given an ICD. You will go through all kinds of emotions with what has happened to you. If you want to talk more just send me a message. You will get through all this hun. Take care.

Jo x ☺

[Driver11]

Hi my ICD was fitted in Sep 18 following CA. I didn't get a choice and I'm glad I have it. Its my insurance policy , the bedside monitor is connected to the hospital and they do keep a check on you. After a while you don't even know you have this thing in your chest and you get on with life. Good luck but it will be sore for a few days

[Bigheart58]

I had a HA shortly after you did, in February 2020. After having a stent fitted, I went into a cardiac arrest while in hospital. I had a further serious electrical problem with my heart during surgery to fit a temporary pacemaker.

I was subsequently advised to have an ICD fitted and am very pleased that I did. It’s a brilliant piece of kit. As others have said, it’s my insurance policy in the event of any further cardiac issues.

I am aware of my device (mainly at night in bed) as it protrudes slightly under my collarbone but you quickly get used to it.

I did have to surrender my driving licence for six months which was a bit of a pain but it’s worth it for the peace of mind you get.

Again, as others have said, given the enormous cost of these devices - many tens of thousands of pounds - your cardiologist wouldn’t have recommended you get one unless they thought you needed it. Better safe than sorry!

Good luck and stay safe and well.

[imy1213 in reply to Bigheart58]

Thank you for your information, hope your doing well now , its been almost a year since u had it , have u been able to do any sports or physical activities with ease or is it something u cant do once in, football was my social life as well as my loved hobby and the thought of never doing it again really brings me down .

[Bigheart58]

I’m doing really well thanks. My cardiologist reckons that the ICD has made a big difference to my quality of life, together with the medication. .

I’m 62 and am less active than I was when I was younger. The only sport I now play is golf. I do get breathless walking up hills and I certainly couldn’t play football. Playing any contact sport with an ICD is potentially a bit risky and you should certainly discuss this with your cardiologist.