British Heart Foundation

Constantly scared!

Hi, I know it probably sounds pathetic and many of you on here have been very ill, but my hubby had a cardiac arrest at the end of July. He just went down like a sack of spuds and no-one as yet can explain why other than it's the 'electrics'.

He was shocked a total of 11 times and kept alive for 40mins with CPR by myself, friends and then the paramedics. He was in intensive care for 4 days and brain damage was a definite probability.

Fast forward 4 weeks and he is now home with a defibrillator fitted. His normal heart rate of 42 is now artificially raised to 60 bmp and he is on a betablocker (sp?) every morning and night. He's 48 and has always been incredibly fit and active. A Saturday walk would mean 10 hours walking in Snowdonia.

I know I have a lot to be grateful for, but I seem to just be in a constant state of panic. Every time he walks the 20 yards to the shop for a paper, I worry. If he gets up first in the morning and I can't hear him, I worry. How do I get past this?

His heart could stop again at any time. It took 11 shocks in the end to get him stable last time.

How does anyone live with this? If you are in a similar situation, I would really appreciate your advice.

Thanks

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Hello SickoftheM6, what you feel is perfectly normal, my wife and family go through the same daily as im sure do relatives and friends of almost all on here. I am asked time and time again how I am, the slightest oh or ah gets an immediate response 'are you Ok'. It's quitened down a lot as I am nine months past but I know they still worry and feet. There is no simple answer to how you feel and how to get past it, time and his recovery process will help. He will get better as time passes, drugs, maybe an operation might be needed, but as he gets better you will see that and become less stressed.

Has he had any cardio rehab classes lined up? What are the follow ups for him? The medication, like most things, isn't an exact science, they may be perfect first time round but often need adjusting.

There is a lot of experience and knowledge here and everyone is willing to share, there are partners of people who have heart disease too, who can add their words of wisdom, it may feel a lonely place currently but it's not.

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Thanks for taking the time to write, skid112. It helps. He has his first check up mid September, so we can ask about rehab classes etc then - thanks for mentioning it. He's finding it very hard to come to terms with what he can no longer do, so focusing on what he can do would seem a better option!

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Patience is the key, learning to do things at a pace to suit while he is recovering. We've all had setbacks, tried to do too much and suffered the following days or even weeks. A learning process, enjoy the power naps post exercise no matter how short or long sleep is a wonderful medicine and he's probably not sleeping to good at night

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As the wife whose husband did the same as yours I know exactly where you are coming from. At the moment D cannot get out the house on his own due to chronic leg spasms, but everything time I go out and come back in and he doesn't answer my "hello" I panic thinking is he lying dead on the floor. He doesn't have a defibrillator fitted.

I have a strong support circle of girlfriends who make sure I go out and keep grounded. Yes I worry, waking in the night, but I am trying to move passed this before I put myself in an early grave.

Can't tell you to stop worrying but do go out and take some down/me time.

K

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Thanks so much for this! In my head, I know there are other people in the same situation, but at 3 in the morning, that doesn't mean much, does it? 😕

Thank god for girlfriends, eh? We're both lucky to have them. I hope all goes well with you too.

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Yep that 3am wake is a bitch, is he breathing? I have trained D to answer when I call so I don't go charging up the stairs. This morning he actually called out hello before I called for him!

I talked to My husband about my worries and fears, and I think he now understand it didn't only happen to him and he understands my need to constantly check. He also realises he is not the one having nightmares about watching people fight for his life, he luckily can't remember what happened or where it happened. Whereas I walk past that spot every day.

K

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Hi there - I'm so sorry to hear about your husband, and it certainly sounds like things have been tough the past few weeks. It's good to hear that he's recovered well from his cardiac arrest, and in future if this happens again then the ICD is designed to treat these rhythms and shock them back to normal. The risk of this type of cardiac arrest is also reduced because he's on beta blockers, which you can read a little more about here: bhf.org.uk/heart-matters-ma...

One thing you could consider is asking for a referral from your GP for counselling - this could be both as an individual and a couple, and it can really help to resolve some of the anxieties you're having.

I hope this helps.

Take care,

Chris

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Hi.

My experience is very similar to your husband though 2 months further down the line. I'll get my wife to add her comments...

Suzie. We have 2 boys (9 and 14 years) and that def helps as I try to keep things as normal as possible for them. However sometimes I feel I am just putting one foot in front of the other!! I now don't hesitate to ask for help whether is just a lift or help with the boys to get them to their various football venues! I work for the NHS and I agree the cardiac rehab classes are worth doing as well as asking for any support or counselling. Stick in there it will get easier.

That said there still are frequent times (3am this morning) that I wake up worried. We are not alone, if that helps?

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Thank you all so much for taking the time to post. Just knowing that there are other people going through the same thing somehow helps. We have an 11 year old daughter who starts secondary school in a couple of weeks, so I've been focusing on new uniform etc and trying to be as normal as possible. Unfortunately she was there when her dad went down and saw the battle for his life. She's had a summer holiday being passed to and from grandparents as I battled daily up and down the M6 to Stoke hospital. The usual mum guilt has just been amplified!

Right. Time to get through another night! Good luck everyone and thank god we can talk to each other. I think this may just keep me sane!

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Hi, there...funny you should mention Snowdonia...my 48 year old husband, loves his cycling/triathlons/open water swimming etc...had a heart attacks whilst out on his bike in the middle of North Wales...and no signal on his mobile...! Biggest shock ever, for both of us. And having been a paramedic for quite some time - he ignored it all, came home, didn't tell me about it, and was admitted to hospital a few days later needing an emergency double bypass. He had some complications after surgery (turfed out early, bed needed, but had an infection in surgery area, no medical/health support set up when he got home, and was then readmitted via A&E and stayed in for another few weeks - sickoftheM40! )I started to feel just so helpless - when he finally arrived home for the second time, I was just trying to focus on helping him in any way I could, which didn't seem to be very much at all - in the end, I found a local heart support group as I really needed just to offload to someone who actually wasn't family/friends, and the lady running that group was brilliant - I didn't attend but we just had a few chats on the phone - made me feel that I wasn't being a selfish cow for needing some support for me!! So perhaps you could go online and see whether there is one close to you? I also would lay awake listening for his breathing, if he didn't answer the mobile (I had to keep going to work as couldn't get all the time off when he came home the 2nd time - have never stopped feeling guilty about that one) I would get really anxious but then have to try not to show that in case that increased his anxiety as well. Not a bundle of laughs, that stuff. But now - we are 2 years on from surgery. He still has some twinges that he worries about, and I still get cross with him if he goes out on his bike and doesn't take his mobile - usually cos it's not charged up...grrr! But - he is still here, so am I, and we have learnt a lot about each other, and our selves in the process, and have found a way of managing all the differences in our lives following his heart attack. It is a case of 'just time' that helps, I think, and learning to accept the differences - this is something that my husband is still struggling to come to terms with - not feeling as physically or mentally/emotionally strong as he used to be. So -on the 2nd anniversary of his surgery, we bought a Canadian canoe, which helps us to keep fit together, and when we're tootling down a river in the sunshine, is also very calming, and helps us to keep things in perspective and appreciate the gifts we have. We have also set up a local heart support group, as we have learnt that whilst the NHS fixes the pipework and dishes out the pills, with the best will in the world, and such pressured resources now, they are unable to provide the psychological/emotional support that many cardio patients (and their loved ones) need. Wishing you and you hubby all the best...it will get better...x (Apologies for the long reply - it may help you sleep better!! :) )

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Know how you feel with your "selfish cow comment". Currently in that mode, wonder if its new "stage of grief" i.e. Anger, denial, selfish cow, etc

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Hadn't thought of it like that before, but I guess we are all grieving for what was. Time....

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This sounds so familiar! Especially the bit about the phone - he has always forgotten it in the past, or the times he has remembered, it's switched off because he didn't want to make a phone call!

I agree with karenpr, that 'selfish cow's is the new way of life. I feel like I'm acting all the time. I don't want our 11 year old to see how worried I am and it seems unfair to let D see it as he has his own worries to cope with! I've taken to having more showers - you can shed tears if you need to and no one is any the wiser.

I'll have a look for local groups. Sounds like it might help.

Thanks

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The thing is...we do have to find the energy to look after ourselves too...for us, as well as those we love and live with...yes, definitely agree with the grieving, I grieve for what I now realise was a normal sort of everyday life that we chugged through together...am definitely done with drama, that's for sure. I grieve for my husband's loss of his self/identity/lifelong career/strength, which also has an impact on our relationship sometimes...it is so hard to watch him struggling to find himself again, work out who he is, what he can/can't do, even now, 2 years on. But I do try not to dwell on it all, keep myself busy, try and keep upbeat as much as possible - fake it until you make it and all that!! Bloody troopers we are, aren't we?? Never mind the Army Wives, hey??

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I found crying in the shower quite therapeutic, and also economical - saves on the tissues... :). I think that it is good to talk with some level of openness with your offspring about what's happening right there in your home - they are so tuned into us anyway when you've all lived together for a long time. My daughter said to me one day 'We are actually grown up now, Mum, you can talk to us, you know' - (my 3 are between 34 and 40 now!) but I was so used to being 'Mum' I didn't really open up to them about much at first. Bit different with an 11 year old, of course, but it still may help just to say that some days you feel sad etc as she will have a lot of feelings about stuff as well...she might be more worried if she picks up that your worried, without perhaps knowing why? Or she may imagine 'the worst' which might not be as bad as your actual worries! I tell my husband now when I am worried about him, because sometimes I think that he could do more to make things a bit better - such as - just answering his phone!! And such as - he lost a cap from his tooth, and he kept saying that he would ring the dentist, and I was worried that if he got an infection in it, as a cardio patient, that would be a risk to his health (I don't know if that is true or not, but all I know is that when he came home from his heart op with an infection in the surgery area, and what happened to him in front of me when we were in A&E, just means that 'infection' is a big bad scary word to me now). In the end, I said that that was what I was really worried about - he then rang the dentist - but had to wait so long he now has an infection in it anyway?? Sometimes he just needs a boot up the proverbial... :)

And I've accepted that I wasn't born to be a nurse!!

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One of my friends actually comment to me "have you found a caring bone yet?", so that's two of us who weren't born to be nurses. Luckily one of my best friends is a nurse who asks sensible questions when we meet up and gives me non medical answers and suggestions a total life saver.

D has moved on from the denial stage this week to "depression" so we are struggling to keep him positive as he mourns his life as he knew it added to the fact that we still don't have an answer to why he cannot get up and down the stairs without his legs collapsing.

Luckily our children are older and can listen to me and talk to their dad, but they don't always want to see what a pain he is being. Your 11yr old may not be able to allow you to sound off but she (?) will know there is something wrong and maybe holding back her fears in case she upsets you. Go out for a girls coffee and cake and laugh and chat and cry together if necessary.

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We're in Northumberland at the moment on holiday. It didn't look like we'd make it for a while, but as it turned out it was perfect timing and has been good for all of us. Our daily routine has turned into me driving us to the beach, where D snoozes under a blanket and L and I swim in the sea. We don't mind the temperature! I had my best nights sleep yet last night, so sea air and being knackered is obviously the way to go. The only down side is distance from friends - it's quite intense.

I think you're right about me having a proper chat with L. In conversation yesterday it was clear that she thinks daddy is still poorly, but will make a full recovery and everything will be back to normal. I don't think D has accepted that isn't true either, yet.

I hope you get some answers soon. Collapsing legs sounds really tough - physically as well as mentally. Remember to look after you, too. You don't want to put your back out helping him. That wouldn't help anyone!

I think it's important that we acknowledge, even just between us, that they can be bloody hard to live with. We understand that they are in pain, frustrated etc, but we have lost our other half too. The relationship has changed and we need to be allowed to be sad and angry too. We didn't ask for this either. I'm going to try to talk to D about this today. The fact that L appears to be surgically attached to her wet suit should give us some time 😂

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Glad the break is doing everyone some good and gave you the opportunity to talk to L. We will all hang in there and pray that things get easier and better.

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Hope your chat with your 11 year old will bring you even closer together - your family events have given you even more in common than you had before... Yes, have to agree, I haven't really used the term ' grieving' to apply to myself, but to my husband in terms of him coming to terms with his new 'self'...but guess I am grieving too. I can't work out whether some of the changes in my husband are to do with post-op (double bypass) physical and/or psychological impact, how much is to do with all the medication he is on and side effects and more likely to be a bit of both. Has been diagnosed with PTSD because of what happened after he was readmitted after his op, via A&E, and a doc who didn't speak a word but then did the most unspeakable things to him, and in front of me too...for which I've since had EMDR therapy, and he has only just now, this week - 2 years after his op, been offered counselling. He also had really bad gout when he got home, which still affects him now...my family used to tease me for marrying someone nearly 10 years younger than me, but the future I thought we might have, i.e. me becoming decrepit many years before him, and him looking after me, has all been turned upside down!! Think I'll try and get my money back...!! But when I have been through tough times with my health and work stuff (2 broken ankles, jaundice, redundancy, bullying from manager and a bout of reactive depression - not all in the same year!) he has always been there for me - now it's my turn to return the favour. Marriage and all that...!!

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I am in a similar situation and do know how you feel. It is such a huge responsibility- if you are at all like me you probably want some strong person to come along and look after you. All this " be strong" stuff takes its toll and you may have all sorts of physical symptoms, which worry you even more - if I get ill who will look after him? I have neck and shoulder pain- going to see the physio about that. And What is a good night's sleep? I have forgotten!

I tried to talk to the GP a bit and he said stress and anxiety will cause all these symptoms- had nothing to offer in the way of a magic solution. One suggestion I have had is Paul McKenna's book and CD I Can Make You Sleep. A bit sceptical but I might try it. GP did prescribe a small number of sleeping pills- 7- and although I don't normally use them I feel it's reassuring to know I can take one now and then if the sleeping gets really bad. So far I haven't used them.

Is your husband going to have any further treatment? I trust the hospital is keeping in close touch- one thing I try to make myself remember is to ask for help. Has he got an appointment soon to see a specialist? If not, ask for one. Call 999- my experience of the paramedics was very good- they will come as quickly as they can and treat on the spot. And they don't mind if the patient doesn't need to go to hospital- their knowledge and experience will tell them that you are not a time-waster .I hope you are lucky enough to have a kind GP.- have you been to see him/her about your anxiety?

My husband had a sudden heart attack at a similar time to yours- 6 days in hospital, and we are nearly at the end of a 6 week wait at home while he takes drugs and regains strength. Back to hospital next week for triple bypass operation. The waiting has been a huge strain and the recovery will be slow = more anxiety and stress.

Are your friends rallying round? Bringing you meals. Taking you out for a walk and a coffee. Phoning for a chat. Dropping round. I think you need to be slightly ruthless- though polite- with friends. Frankly, in bad situations like this, some are more help than others. Cleve to the ones who put you first and who will drop everything to come straight round to see you if you need them and who will LISTEN to you. Tactfully see less of the ones who tell you about their awful medical experiences or who just want to witter on endlessly about their own affairs.

Have you ever tried homeopathy? I do not go in got crackpot alternative therapies, but in the past I have found this very helpful. It certainly can't do any harm- and if you have a sympathetic practitioner just talking to her can be hugely helpful. Doing the breathing exercises and taking the remedies also helps you to feel you are doing something to help yourself.

Good luck to you and your husband. Keep in touch and we can compare notes.

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