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British Heart Foundation
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Just been told I have heart failure

After a heart attack in March at the age of 50, my consultant told me last week that my heart function is only 32% and I may be considered a candidate for having a defibrillator fitted. absolutely terrifying news and am still trying to get my head around it and what it means and that's the point, I don't know what it means and I'm scared of asking the questions and worse, getting the answers, feeling very lonely right now

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I had a heart attack age 50 six weeks ago. It was a shock!! However I am doing whatever I can to reduce my risk factors. Don’t stress and not talk to anybody. Your GP can help, the mental strain felt after a diagnosis can really knock you sideways. Seek advice from your doctor.

Regards. Mike

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Thanks for the reply Mike, its reassuring that others are out there feeling the same, just got to learn to ask for help, thanks again

Carol

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Hey I am 43 and had a heart attack in April, was dead for 8 minutes and in a coma for 3 days , it was an absolutely shock but I am here and alive, enjoy your life and don’t stress. Was referred to high blood pressure clinic and is under control now. I struggled to accept what happened but I am planning to enjoy every minute of my life.

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I had a heart attack to 6 weeks ago aged 51 like you I've been very scared and emotional since it happened but reading on here other people's experiences does help.

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thanks for that, lots of reading to do!

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Hello I couldn’t stop crying for the first 2 weeks after I came home from hospital. I had a heart attack at 43 and could not come to terms with that. A combination of high blood pressure and cigarettes and stress did is work. Had a triple bypass!!!!! I am ok now and planning to enjoy life.

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Hello. Why not book time with your GP so you can voice your fears and if needs be a counsellor. I have seen both a counsellor and health psychologist as I couldn’t move forward. If you have specific questions maybe speak to a nurse on the BHF helpline who can answer some specific questions when you’re ready to ask them. I know how scary it is but there are lots of people here who can help support you. Take care and stay strong. Zena x

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Hi Zena, thank you for your wise words, i'm not good normally at sharing my feelings but think I have to start somewhere, Carol x

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It’s worth it. I found it invaluable. Take care. Zena x

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I definitely think you should contact your doctor as regards finding someone to talk to. You really shouldn`t feeling lonely and scared at this time.

Have you no family you can talk to?

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I had the same news in May. It was totally unexpected as I was having pre op assessments for a bladder op! I found the BHF helpline great because there was no waiting and worrying. They are very helpful and also enanabled me to be more "organised" when I got my gp appt. I now keep a note book handy and write down any questions and worries so that I remember to ask whoever I see next. If something worries me too much in the mean time I ring the help line. All the best with getting through this.

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Hi Veryscared

I too have been diagnosed with heart failure and might need a defibrillator. I don’t think it is anythingbto be worried about. It just shocks your heart back into rhythm at times of need. Lots of public places have defibrillators and they are life savers.

My heart function has improved considerably since my diagnosis so hopefully yours will too.

Ann

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Hi Carol....i know this is a very scary time for you .... I have had a type of pacemaker and defibrillator fitted as my EF was at 30% ( which did go back up to 34% pre op!) So with good care and less stress ( easier said than done but do try breathing exercises) you can get back to feeling you again .

The good news is they did not fit it straight away .... they may do lots of tests first. This to ensure they are happy that they are giving you the right treatment for you. Although I found this bit frustrating it is good to have all checks carried out and in place. In the meantime I put myself on a health regime to myself as healthy as I could. I became tee total.. . Eat mainly fish and chicken... lots of vegetable and salads... had the odd lasagne I must confess.

Having had my op I feel so much better... I hadn't realised how tired I got bit with the device now helping my heart to pump I have more energy. Yes the defibrillator was a worry... but like they explained it's just for insurance purposed. It probably will never be needed.. but if it did kick in... well it's just then saved my life. So I looked at this as a win win. But with the rest if the pacemaker working it's much less likely to be needed anyway.

I worried too about having a piece of metal in me... so decided it would be my friend.. and called him Kurt... and he is looking after my heart wonderfully. I feel much better and can get on with my life again which is fab.

When I was first told... and indeed throughout the process... I had many questions.... the BHF nurses ( you just call them on the helpline) were amazing. I cried, I questioned, and through it all they listened.. reassured me.. talked me through what it all meant and had so much time for me... I will be forever grateful. I also wrote questions and contacted my consultants P.A. who were very good at getting the doctor or to call me. But they have much less time so get your questions ready.

If you have any other questions you would like to ask me about the device please don't hesitate to get in touch. Fellow heartie 💕 x

Karen

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Hi Veryscared. I also have heart failure and have the same device as Heartlady/Karen - a type of pacemaker and a defibrillator combined. I had mine fitted just over five years ago, I think, and was just as scared as you sound. I was also afraid to hear answers to the questions I had, but I've come to realise my fears of what might be were (so far) always much worse than what really was.

Basically people with heart failure of a certain level (who haven't improved a certain amount within a certain time post-diagnosis) are statistically more likely to experience sudden cardiac arrest. That doesn't mean that you personally are expected to experience it, just that it's a bit less unlikely in your case than it would be for someone without heart failure. If you get the defibrillator and don't have a sudden cardiac arrest (most likely outcome) the defibrillator will just sit there and do nothing - once it's settled in, you shouldn't even be aware that it's there. If you do have a cardiac arrest, the defibrillator will probably save your life.

I know it's not easy to view things that logically when you're frightened and trying to process lots of new information, but I found trying to see it that way made it much easier to deal with...once I had taken a bit of time to get used to everything. Nowadays I really don't think about my defibrillator much at all. My expectation is that I won't ever need it to shock me, but I'm very glad it's there if I do need it.

As others have said, please do talk to someone about how you are feeling. I think the BHF helpline would be a great first port of call - people who know what they're talking about and have the time to talk through everything in depth. And if you are imagining the worst anyway, then getting the answers to the questions you are afraid to ask should make you feel better rather than worse.

Feel free to message me if you want to ask me anything about getting and living with the device. There are some other threads about defibrillators too, I will try and dig out the links for you x

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Lots of happy ICD owners in the replies to these posts, plus the BHF information page, in case you haven't seen it already :)

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Dear very scared 😨 (heart failure ) what a horrible description but do not be scared I am told it is just a general term because all the medics in their wisdom could 👎👎👎 not think of anything else to describe our stupid but not life-threatening condition. 👌💘 Piffle accept our ❤ hearts do not work as 💪strongly , be grateful if has been found out. So many walking around ignorant to the fact, just take a little more care of yourself , take your medicine. Stress, worry, anxiety is the worst 💊 medication for our condition. Try not to fret.Cheers and the very best of health, we are the lucky ones . I am 80yrs 👌old and got my diagnosis seven years ago. I also take haha the dreaded Warfarin.......How fortunate am I lol. 💘Love Gladie.xxx.

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I say Baa Humbug . Cheers and 👍Good Luck. , Gladysxx

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Hey please don’t be lonely had my 1st heart attack at 37 and another 3 years ago at 54 , same as you a heart function of 32% . I now have a defibrillator you never really get your head around it but your alive so try and live for today life is so short xxx

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Hello..talk to your GP and your cardiac nurses..I was told by the nurses that they had patients with a lot less heart function living a full life..it is a very scary time..your not alone..I hope you start to feel better soon..rehab was the best thing for me..I was able to talk face to face with people that had gone through the same experience as I have..

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I too have been told I’ll need one with a wire going to both sides of my heart. It’s all said in a casual way,so you don’t digest it very well until you go away and think about it. It is scary but all these people on here have been through the same trauma or something similar and are here to tell us all about it and give advice. So we can take comfort from that. Take care ‘veryscared’ xx

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Wishing you all the very best. The British Heart Foundation have a helpline with nurses and others you can talk to about your fears. If you have also been diagnosed with Cardiomyopathy (one cause of heart failure) , there is a charity CardiomyopathyUK which is the heart muscle charity & has a helpline

0800 018 1024. Good luck. Clare

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Hi, I noticed that no one appears to have told you when your heart is working fine it only has an E.F. of about 60% so if you where working on 100% that changes it from working about a 1/3 to just over 1/2, nobody told me that and I was at 38% about 3 1/2 years ago so when I found that out my heart went from just over a 1/3 to nearly 2/3 which seems so much better, bhf do have a book on heart failure and pacemakers, both can be ordered for free or downloaded. It does all come as a shock and there are only limit answers but the shock of it has disappeared for me over time, got myself a new push bike this year and now go out on that. Jan I started to pass out twice one day so was kept in hospital until they fitted a pacemaker (no defib), another that is no where near as bad as the thought of it, with pacemakers there a hole lot of things to avoid going near (check 'Medtronic' site) but it's not the end off the world if you do because they revert to a factory setting to keep you safe and when you go away from the interference they revert to your setting. I work in an engineering machine shop so we have big motors with magnetic fields and lighting magnets. It may help to look at some of the replies I've had to one of my posts. Hope this is of some help. Good luck for the future.

Andrew (age 52)

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Hi veryscared, I can totally understand how you must be feeling, although I haven't had a heart attack myself. You have come to the right place for advice, kind/wise words and a friendly kick up the bum. Many people put my mind at rest when I first joined this site - I have dilated cardiomyopathy, 17% ejection fraction & was 61, fit & healthy when diagnosed. I had a CRT-d (resynchroniser pacemaker/defib) inserted in November and as many people will tell you, it's scary but you have to be positive. Look in the Topics on this site, ask questions, read all the info from the BHF and speak to your heart nurse who you'll (hopefully) find reassuring and informative. I still read comments and advice from the people who've already replied to you below (I think laura_dropstitch is full of great advice). I wish you well, I'm sure you will be when you get the support you need. I'm starting back at the gym when I come back from holiday (cancelled 2 abroad last year but just about to go on my second one this year...) & my life is pretty much back to normal. A defibrillator sounds scary but in the long run it could save your life & you've got a lot more living to do yet at such a young age. Sending my best wishes, take care.

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