Hi. Don't really know where to start but I know I'm struggling to deal with everything everything I've been through. Over the pat 10 years I've had 9 heart ops. At one point I was seeing more of the hospital than I was of my home. I've ended up having an average node ablation and permanent pacemaker ICD put in due to persistent af and vt. At its worse my heart was 170bpm for 2 weeks solid 24/7. It's been 2 years since I had my second pacemaker put in and I hate it. I struggle to sleep I have nightmares panic attacks (keep thinking my ICD is going to go off). For 10 years I went through a living nightmare and although I've come through it. Inside my head I'm still right there in that nightmare. To the outside world I'm happy easy going tough and brave. I know I'm not.
Any advice or help would be more than welcome. I feel I'm going crazy.
Thanks.
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Paceygirl74
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It all sounds extremely tough. You’re amazing, keeping a brave face at least to the outside world. My experience tells me that repeated setbacks are particularly tough. Just as you get over one serious setback and start relaxing, another one hits you. It’s exhausting picking ourselves up each time. Makes us feel so helpless. And your setbacks have been over such a long time..
I struggled for ages, trying to set myself small goals, and building up that way, each time. But it wasn’t enough, and the depression and helplessness needed a small dose of antidepressants, but best of all, was some talking therapy,
It sounds like you are, naturally, very conscious about your pacemaker and v anxious it will suddenly kick in. Not v technical terms! Sorry. But I’m sure seeing someone will help with the anxiety it causes and will help keep you positive.
I’m not sure any of this helps. Keep your spirits up. We’re right behind you,
Hi I'm sorry you feel they way you do but I understand how you feel. I have an 80% narrowing of my Lad artery and I'm being treated with medication. I worry that I am ticking time bomb at times. I have been doing positive thinking saying in my head Why should it happen now I have been ok for a year ...I nudge the negative thoughts away. I have felt happier and slept better look forward to holidays Christmas ect. But when I get an ache or twinge I'm back two steps again . I was like that last night but today I'm going to be positive again as I felt so much better and in a happier place. Try it see if it helps you after all your here ten years on and still fine. I wish you well xx
As others have stated, get some counselling. Talking through your issues with someone who is independent of you and is appropriately trained will help you hugely. Go and see your GP he/she may use drugs to help you but increasingly they too are recommending talking therapy.
In the mean time, try to focus on the positives and don’t dwell on what has gone before. You have been through a lot but you are still very much alive and kicking - remember that 😃
What a lot you've been through, no wonder you are finding it difficult. I'm sure most people on this forum will have felt similar at some point, I know I have. I'm really lucky that my heart hospital has a full-time specialist psychologist that I've been able to speak to over the years. I also found antidepressants really helped me to find the head space I needed to put what I learned from the psychologist into practice. I would definitely speak to your doctor about your feelings, would be such a shame to overcome so much physically and not be able to enjoy life fully. Good luck and lots of love x
Hi 👋 I’ve just found about about a NHS service called
Step2wellbeing, which I have contacted about what I thought was depression after my AVR, my rehab team think I have post traumatic stress. You can self referral on line or by phone or your doctor can do it.i start with a hour long assessment by phone on the 23rd Nov then will go to my nearest clinic for therapy. Maybe this is something that could also help you, it’s worth the try. Hope this has been of some help Kaz ❤️💕❣️
I’ve had over 40 heart ops and I’m onli 31. I struggled to accept having a heart condition but I then found out I wasn’t the onli young person born with a heart condition and finding it easier to cope with. I’ve onli just started to cope tho about a couple of months ago. I remember about 10 years ago I was awaiting heart surgery and the Christmas before my surgery my mum bought me pjs, which freaked me out cos I thought of going into hospital the minute I saw them on Christmas morning. That Christmas I was withdrawn from the night before Christmas Eve wen I got down in Poole to spend Christmas with my family. The jornery down all I did was listen to worship music in the car. There was no talking to my grandparents who I was traveling with.
Wow bloody hell you've been through a lot. I also had the pj's and silent car journeys having to b coaxed into theater by the nurses. At one point I was on lock down on the ward because I wanted to leave but really wasn't well enough.
It's definitely sites like these that u realise you really aren't alone.
I wish u continued good health. As much as is feasibly possible when it's your heart that's poorly. It's an invincible illness and that always makes it harder. Vicki.
I'm listening to worship music right now! That's great girl! 40 operations.....you're amazing! The Lord is keeping you around for great things! You are in the Greatest Hands!
Hi you have been through it. I have just had my third icd. With my first two I was fine didn't think about it or worry. Since having this one 6 weeks ago and being told I pace 100% I have felt really anxious and also worry my icd will give me a shock. I have tried to do a little at a time. I am. Now back at work full time and doing some walking. I have found it difficult finding people to talk to. This forum is great other people are going through similar things and all are positive. I found talking to my icd technician at my check up really helped. I hope you start to feel better and find the help you need x
I feel slightly ridiculous on here as I've had my pacemaker Icd since 2015 and. You previous one from 2013-2015. It's just recently that I'm started to panic at night a bit. Not even sure why to be honest. I know I'm lucky to b here as my last op was my last chance. Without it I wouldn't b here now. So I am really grateful and I have more energy I'm able to run for a bus (I could never do that before) I've lost over a stone in weight which is good. There are so many positives that sometimes I think I'm being silly. There are those times though that I wish I had my life back pre 2013 where everything just went catastrophically wrong for me 3 cardiac arrests on the operating table(gave my surgeon a real scare) my heart stuck at 165 for 3 weeks 24/7 a 10 hour op which my heart never really recovered from.
I think a massive part of it is that I haven't dealt with what happened to me. I've boxed it up and pushed it to the back of my mind
I'm sure one day I'll get there just not yet. I told one of my nurses everything I'd been through since 2005 and her words were : it's not a nightmare it's a horror story: and that's exactly how it feels.
It’s hard I had traumatic experiences too and even though it’s been approx 15 years since it all started and I’m on my second pacemaker you never really get over it. It’s a lot to have to deal with and mentally you don’t really get any help, I bet most people just plod on by themselves. Hope you manage to get some help, take care, Tracey
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