First Post

[jim_]

Hi there, my name is Jim. I had acardiac arrest three weeks ago and an ICD fitted two weeks ago. As I don't know anybody else with this condition I thought Iwould try the BHF for more information or the experiences of others with a similar condition. Up until recently I have enjoyed a fairly active life and am wondering what the future has or has not in store for me.

[Heartlady1]

Hi Jim.... the good news is you can have a good quality of life after a HA. The ICD device is there to protect your heart and if your heart should slow down too much the ICD will kick in via electrical impulses to speed the heart up to get back to a normal heart rate. So is there to look after you

All of this has happened very recently and we all on here understand that you will be going through lots of emotions right now.... which is also natural and Normal.

Give yourself time and focus on recuperating. It's normally a scary time too wondering what we can and can't do.... a great way of getting your confidence back and getting your fitness levels up is to go along to a rehab course ( normally a 6 week course) this is not always offered automatically.. .. and so if you have not been offered this please ASK for it. This is something that you should be entitled to.

It may take a month or so to get booked on the sessions.... but they will give you a programme of exercises and amount they want you to walk each day... as well as a weekly work out at the local rehab centre. This is a great way of getting back out there... and also of getting fitness levels up... under the guidance of the professionals. And it shows you how much you can do... and it's good for the heart to exercise. They will also talk you through diet and you will record your food intake for the 6 weeks. It's up to us to eat healthy and exercise .... and that will help you get back to health much more quickly.

Trust me there is life after a HA... and a fun filled good quality too. I had a HA 23 years ago and have had a busy and full life since. As we all say on here we are the ones that have been spotted and can be monitored and given extra help that we need... like an ICD.

All the best with your recovery and moving forwards.... and you will move forwards.

Kind regards

Karen

[jim_ in reply to Heartlady1]

Hi Karen, thanks for taking the time to reply to my post. Haven't heard anytrhing about a rehab course or any thing else including exercise and diet. So I suppose it's up to me to make my own way with things.

As you say; perhaps we are the lucky ones who've been spotted.

toot toot

jim

[Heartlady1 in reply to jim_]

Hi Jim, no they never seem to tell anyone about rehab, however if you ask for it they organise it for you. Its bad that its done in this way but please dont feel because it hasnt been offered, that you cant have it. It is all about funding, as everyone who has had a HA is supposed to be offered it.

You are only 2 weeks post op so they prob may not want you to start rehab yet, but if you have a further appointment with the hospital doctor be sure to tell them that you are keen to take up the rehab offering, they then have to put you down for it, And I am sure this will be invaluable for building your strength and your confidence.

I know you are probably still in a daze and grieving for your good health but honestly you will feel well again, in time, and should be able to do most things you were able to do before, and in the interim you want to rant or rail about it all, please feel free on here, as we all understand,

[MathsNicky]

Hi Jim....hope you re soon feeling less sore and sleeping ok. I ve had My ICD since 2005 (when I was 44) and have been remarkably stable (I m on shed loads of medication which I take religiously which helps). I rarely feel the pacing and am haven't been shocked so have tended to stop worrying about it and view it as a life saver. Are you retired or still working? (If so you might want to phase back to work part time at first and ask to see occupational health). I found it frustrating not being able to drive for 6 months but work paid for a taxi when I went back. I ve got used to being patted down at airport security and have accepted I can't switch my car insurance. Is there an ICD support group at your local hospital? I found the cardiac nurses and technicians who check your ICD incredibly helpful too when I had questions or concerns. I agree. ...it's difficult to find people who understand how you feel amongst friends and family , so this site is a godsend. Take care and good luck.

[Lezzers in reply to MathsNicky]

Hi, why are you not able to switch car insurance, my husband has switched his without any problems. It is illegal for any car insurance company to penalise you for having a disability /illness by loading a premium or excess. Providing the DVLA are aware of your condition & device & have given you the OK to drive then you can change insurers whenever you like.

[MathsNicky in reply to Lezzers]

Really? I tried ringing around and so dId my broker but couldn't get past the medical questions to get a quote when I said I had an ICD. This was in 2005.....maybe I should try again. Which company does your husband use?

[jim_ in reply to MathsNicky]

Thanks for the reply. My chest is slowly recovering, at first it felt like I had recieved the mother of all kickings. Sternum still alittle sore and sneezing is not pleasant. Yes, I'm still working, though not until the end of this month at the earliest. The six month driving ban is a real pain as I live out in the sticks; the nearest shop is a twenty minute walk and work is a seventeen mile drive.

It's good to have some contact with people who have had a similar experience.

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jim

[sturon]

Hi Jim.

You have been through a life changing experience, but life will continue and each day it will get better. My partner had a two cardiac arrests in December last year. He has a normal healthy heart, except for a condition called long QT syndrome. This can lead to sudden cardiac arrest. He has had a S-ICD implanted. This may be different to your device. There are lots of information on the web. Boston Scientific are the main makers of ICD's and S-ICD they have patient information which you may find helpful. Just google ICD Boston Scientific.

Most heart units have support groups which help patients meet others who have ICD's. Ask if your unit has a group and consider going to the next meeting to see if it helps.

You didn't say if your cardiac arrest was following a HA or some other cause, but whatever caused it you now have an inbuilt paramedic in your chest which will both monitor your heart and give you treatment if it is needed.

It will, of course, take time to recover and get your confidence back but it will happen. We are now 4 months on from my partners cardiac arrests and implant and we are planning our first holiday since it happened.

Just drop us a message if you want any information.

Here's to a long and happy life and wishing you a very speedy recovery.

Regards Ron.

[jim_ in reply to sturon]

Thanks for the reply Ron. I was diagnosed with a heart arrythmia decades ago. It had not been a problem until my cardiac arrest the other week. I had my arrest at a yoga class. I remeber nothing about the arrest or anything that happened before it that day. Nor do I remeber anything much for the few days after the arrest. As you say it is a life changing experience and adjusting to the futeure will take a little time. Good luck to you both.

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jim

[Lezzers]

Hi Jim, previous posts have pretty much explained everything to you. However, I thought you might like to know my husband had a massive heart attack 20 years ago resulting in cardiac arrest. He was on life support for a while in a medically induced coma & they pretty much wrote him off. 20 years later he's still here, had an ICD fitted 5 years ago & though it has corrected his heart a few times it hasn't shocked him. Hope Kevin's story shows life does go on & can go on for years after the event xx

[Lezzers]

Additionally, there are 2 support groups on Facebook, one is is called ICD Support-Uk. The other is Sudden Cardiac Arrest UK. Both a valuable sources of help advice & support. Incidently, Sudden Cardiac Arrest UK are doing a Guinness Book Of Records attempt by bringing together the largest amount of CA survivors. It's being held in Basildon hospital in Essex on 9th June & it's hoping to promote awareness of SCA. Apart from the attempt there will be lunch provided & an educational seminar plus a celebration of life party afterwards, you will need to register by 27th April. If you are interested & are able to get there I would definitely recommend it as you will get to meet people who've been there & done that & that sort of support goes a long way to help with recovery. I hope you keep well xx

[jim_ in reply to Lezzers]

Hi Lessers, (sorry but the key doesn't work on my keypad).

The previous posts all seem pretty positive. So that has given me a bit of a lift. I'll have a look at the facebook groups. Willl have to look at the practicallities of getting to Basildon without a car; though I'm only in Cambridgeshire anyway.

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jim

[Lezzers in reply to jim_]

That’s a coincidence, we also live in Cambridgeshire. Have you heard of March? Is that anywhere near you.

[jim_ in reply to Lezzers]

March is about forty minutes drive away. I live just outside Cambridge in a village called Lode. Not a lot happens there.

[Lezzers in reply to jim_]

No, I haven't heard of Lode, I'm more familiar with Ely, Huntingdon, Papworth etc

[alexgilbert]

Hi Jim, i think you have done the right thing by coming on to this forum. I felt exactly the same as you do when I had my ICD fitted about eight weeks ago, everything seemed to happen so quickly. I'd never even heard of such a device, but now I just think about it as my little paramedic in my top pocket. My daughter has named it Frank (Zappa) if you are under a certain age you'll need to look a that one up! Coming on to this forum has helped me immensely, I've learned so much about my condition, I've learned that I am certainly not alone, and I've learned not to worry constantly about the future. Take care of yourself and hope to hear more from you in the future. Alex.

[jim_ in reply to alexgilbert]

Hi Alex. Feeling a lot more positive after reading the replies I've had. Similar to yourself I'd never heard of such a device and on the Saturday morning certainly didn't think anything so life changing was going to happen. But hey, it did and here I am the other side of it. So I consider myself quite lucky to be here and am grateful that someone knew what to and was able to help me. Think the name Frank is brilliant!!

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jim

[Ashleigh_BHF]

HI jim_

You can find the BHF Heart Support Groups which you may find useful in the future here: bhf.org.uk/heart-health/how...

It's great that you've posted here, it's a really supportive network. If at any point you need more information on ICDs or want to talk to a cardiac nurse, call our helpline on 0300 330 3311.

Best of luck,

Ashleigh

[jim_ in reply to Ashleigh_BHF]

Thanks for that Ashleigh. I might well give them a ring to discuss my medication etc as I was told a thing when I left hospital.

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jim