ICD/Pacemaker

Hi... I am 46 years old and two months ago had a pacemaker and ICD implanted following the news that I had inherited too many similarities of my Mothers Heart Condition, Long QT Syndrome. Although I have healed well I still get pain and discomfort in my arm and shoulder from lack of use but am now trying to do some exercises that I found on line. There are no support groups in my area and I wondered if there was anyone on here that lived in Kent that has had the same operation as it would be good to share experiences and concerns.

Look forward to hearing from anyone.

18 Replies

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  • I had an ICD/pacemaker fitted in Jan 2014 I was advised not to exercise for first 6 weeks and then as I was nervous about exercise the cardiac rehab team referred me to the cardiac exercise classes where I undertook a 6 week program of exercise which built up gradually. Not only did it strengthen arm and shoulder but it also built upmy confidence to exercise. Perhaps when you go for follow up or if you have a cardiac nurse you can ask about exercising. I was also given leaflet about different types of suitable exercise. Not sure how long ago you had yours done itmohe was uncomfortable for sometime also not sure male or female if latter I found hanging type of bra helped!

  • Should have said changing type of bra sorry predictive text!!!

  • Should have said changing type of bra sorry predictive text!!!

  • Should have said changing type of bra sorry predictive text!!!

  • Should have said changing type of bra sorry predictive text!!!

  • Should have said changing type of bra sorry predictive text!!!

  • Hi

    Thanks for your message. I am apparently on the list for the cardiac exercise class but two months on and I have heard nothing so am going to bite the bullet myself. I didn't get a leaflet or any assistance, just kind of left to get on with it. Still having a fair bit of discomfort and cant' use my arm properly because of pain in arm and shoulder where I couldn't use it for 6 weeks. I have asked the nurse about exercise and they just say don't over exert yourself/no contact sports etc. I have brought myself a Powerball to try and strengthen the arm, shoulder and chest. I am going to get myself a sports watch with heart rate monitor so that I can keep a check on myself and then try and get back to "normal".

    Yes I know what you mean, some bra's are more comfortable than others!

    How are you feeling now? Don't suppose you have a copy of the exercises you undertook at the cardiac exercise class?

    Jane

  • I think I kept them will look them out could scan them but not sure how to pass on as not keen to put email address on site. I am find used a small hand weight to build up strength, doing a lot of walking using a pedometer to build up miles. Mine was insert asat risk of cardiac arrest due to Sarcordosis which as damaged lungs and heart electrics. My local area also offer supervised exercise at local gym through active for health programme referred by GP

  • I can Private Message you my email but only if you are happy to. My condition is an inherited heart condition, my mother has Long QT Syndrome. We both had the operation within 24 hours of each other. Where abouts in the Country are you, sounds like your area is much more pro active about getting you back on your feet than mine. I am going to buy a watch at the weekend and then get my trainers out!

  • Don't worry, just follow the advice you were given at the hospital. I am on my second ICD. It will take about 6 to 12 months to feel more normal. You will probably always be aware of it but can take comfort in the fact that it really is a small price to pay for a very good life saver.

  • I didn't really get any advice at the Hospital. Yes I think it will take a while to feel normal. How long was it before you had to have your second ICD? I know it will save my life should I need it but it was a shock to be told and then the operation was very quick so I didn't really have time to get my head round it. Things sound like they are going really well with you which is great to hear. Hopefully by my second one I will be more together and philosophical.

  • The first one lasted 6 years. I used to hate the thought of it inside my chest and was afraid of it but I gradually convinced myself not to think about it! You can do most things you did before you had it. Are you young?

  • Yes I'm hoping that will be the case for me too. I was told they last between 5 and 7 years. Was it just as painful/inconvenient second time round?? I'm 46, two young children, was very active, am going to do my utmost to get back to relative normality! It still feels quite heavy in my chest at the moment and alien. I'm sure I will get there!

  • I don't think it was quite so painful the second time, in fact I went to a family party the next day and decided to drink wine instead of having painkillers! Mine is under the skin and second time round it has not settled so well into the 'pocket' so I am having it re-sited soonish and they will put it under the muscle, a bit more invasive but it will be more comfortable in the end. I do understand about being aware of it. I notice it more when I wake up in the morning but you will get used to it and it won't bother you too much. I am a good few years older than you, I still work and do all the things that I did before, I am not very sporty so I don't miss anything like that!

  • I like the idea of the wine instead of painkillers! Mine is under the muscle, you know what its like when you sprain or pull a muscle x a fair bit of pain so be prepared. It looks better, apparently, but it is obviously more painful. I'm looking forward to the day it doesn't bother me too much... It will come. Good luck with your operation. Let me know how you get on.

  • I like the idea of the wine instead of painkillers! Mine is under the muscle, you know what its like when you sprain or pull a muscle x a fair bit of pain so be prepared. It looks better, apparently, but it is obviously more painful. I'm looking forward to the day it doesn't bother me too much... It will come. Good luck with your operation. Let me know how you get on.

  • Hi. If you are on facebook,I have a support group for ICD users. Its called ICD Support-UK :)

  • Great thanks Caroline I have requested to join... :)

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