Alivecor and Pacemaker

Hi - further to my emails a few months ago asking about the advisability of buying an Alivecor when I have a pacemaker, just thought I'd update all who replied. I continue to have quite a lot of ectopics but downloads of my pacemaker and recordings when I've had a monitor have shown that sometimes I have symptoms, or feel I'm having ectopics and nothing's happening. Not sure why that is.

However, I have been able to record quite a few instances on my alivecor of episodes of multiple ectopics. I send these off for analysis from time to time, when I feel it's been a bad episode (and not one of the 'phantom' ones!) and I've found the analysis quite useful when discussing symptoms with my doctor. Also I noticed on one recording recently that it said something to the effect that 'we've identified you have a pacemaker which is functioning correctly' but on other analysis, it's not been mentioned. So, for me, it's been useful as it has confirmed that I'm not just imagining things all the time and that some of the time, I am having multiple ectopics which continue to have an impact on my day to day living. It's a pity that apart from being aware of our individual triggers (mine is particularly lying on my left side and various foods), there's no procedure to help with these. My EP I feel dismisses them as nothing very much - I don't now have afib so that's okay then is his attitude. Sorry, a bit of a moan in there too. Anyway, hope this helps anyone with a PM thinking about getting an alivecor.

6 Replies

  • Hi, I can appreciate that you are feeling a little miffed that your

    EP is not really listening to your concerns and is being a little dismissive

    of them I must say that I have no problems of that nature but I have

    on other occasions and it leaves you feeling very unsatisfied and

    questioning yourself. I think its just because they are extremely

    busy and dont really understand how important these things are

    to you and an explanation is all thats required to put your mind

    at rest. I havent got a pacemaker so cannot comment on that aspect

    but others on here have so maybe they will help. Moan away we all

    need one now and again. Shirley.

  • Thanks shirlygirly. Yes they are very busy, so many folk having to live with afib which is much worse so I'm grateful Im not having any more episodes.

  • Hi ShirlyGirly

    If you have just had an ablation can I ask you if you had anything else wrong with you, like an enlarged left atrium or maybe some other illness. Because I have to see my consultant on Thursday and am really thinking that they need to do something about this for me and wondering what to discuss with him? He has already told me it would not be appropriate for me to have a pacemaker, so I have learnt about a catheter ablation, so I am going to speak with him about this, as my daily life just keeps reducing going down and down on a daily basis, I can't do anything. I have been in AF for about 6 weeks now again for the 3rd time and it is so debilitating to me, I look so well and normally I am doing things, but I cant, underneath though I am shattered, exhausted and out of breath.

    Not very pleased when I went into hospital, especially with the Cardio Team because I went in for something else wrong surgically and actually had to be treated for 2 issues. The surgical team diagnosed Diverticulitis, sorted it and treated it, but this caused me to go into AF which they are not experts on cardio issues. They dealt with the Diverticulitis and I have no problems with this as I know what I have to do to try to keep it at bay. However, the Cardio Team put me on a telemetry, monitored me for 4-5 days when I was first admitted, I had 3 really bad episodes of AF whilst in there and I still did not see anyone, when the Telemetry was taken off about 5 days later, Cardio was constantly bleeped to see me, they knew I was in there but it just seems they ignored everything and everybody and my questions were never answered. I saw the ECG nurses on the 10th day and they said that he? wanted and ECG taking, I have no idea who he? is. A young doctor from Cardio then came to see me and wanted to discharge me (I had no doubt about this) and this was on the 10th day the first ever doctor from Cardio I had seen, after all those requests? I saw no others only from surgical, so was he a clinician, doctor, specialist etc, what? I am thoroughly discussed with them all from Cardio. I did not see a doctor from Cardio in 10 days and then he was the only one to visit and he tried to tell me the referral from that Ward (nurses) didn't arrive on his desk until yesterday morning? However, I was not about to put up with that because I told him he was lying, I told him to his face, he knew I was there and had been admitted because of the telemetry they did, so I told him not to lie and I have been here for 10 days, he then said sorry but we have been really busy, I pointed out was there any need to lie about it, he then hurried to discuss with me all my medication and what they were going to do, I was far from impressed by it all and asked him if he would remember to send me my appointment to be defibbed?, he said I would be sent one through the post, he would not forget? He then discharged me. WELL? hey presto guess what? My GP did not even have a discharge note/letter from the hospital or any instructions as to when they wanted my INR's done and no directions as to what they should do nor any advice on me-nothing? Also I rang the Consultants secretary and after speaking with her in the end, the actual consultant could not find anything on his computer either, no discharge letter or anything about me I was told? He then asked if he could see me, which will now be next Thursday.. I just felt like a piece of meat and nobody cared, they did not appear interested at all? Never in all my years have I ever been treated like that, it is a first and after what I have done to help research etc? I know they are busy but we are all human. Well lets see what happens, because I believe that, that Cardio Team wants a swift kick up the backside to get them moving, a short sharp telling off about their lack of support for their patients. People matter and People's lives matter. They can and could avoid any further issues, illness, complaints or money if they reacted differently to things or got a better system. I want my life back! I will get it back to! Sorry that's me done for a moan today. I really hope it all works for you.

  • May I ask why it was not appropriate for you to have a pacemaker?

    I do hope that you are on the receiving end of joined-up treatment in future.

  • Hi Jennydog

    I do not know, as I said in my reply earlier, I have not had all my questions answered as yet. However, I will know more on Thursday. Everyone I know has asked me the same question. I do know that if they catch AF within 48 hours they can deffib you, but outside of this they can't, due to clots they said. Also if they operated now, as it was explained to me by that doctor? he said I could have a clot somewhere in my body and then when defibbed it could shoot straight to my brain and give me a stroke or worse? However, as I told him how can it do that, when I am already on blood thinners to stop the clots? He could not answer me, he just stood there. Well, I have been treated so badly I am going to bang some tables, because I know something better than this, can be done and surely the cost of having something done about it, outweighs the cost of treatment over weeks and going in and out of hospital. I also have a left Atrium slightly enlarged so I will have to listen to the cardiologist carefully, but my husband will be there and he doesn't suffer fools lightly.

    I think perhaps it is down to money again, which it shouldn't be, does everyone including the government really think we know nothing or that we are thick? I will never, ever, ever vote conservative, they have ruined this country and a lot of peoples lives except for the rich, they have made theirs better? What person needs 11 billion pounds it is ridiculous. David Cameron and Osbourne have been born privileged and Osbourne has been born with a Silver Spoon in his mouth and know's absolutely nothing of poverty or wanting, he has not and will not ever have a clue about experiencing it for at least 6 months. He could not get buy without cheating, it would probably kill him? He along with the conservative government has ruined the NHS, the pensions, the sick, disabled and elderly and also those that can do nothing else but go on the benefits system. Some people who are really disabled, have had assessments and been told they can return to work? Are these assessors real. After all these years they know the people who are scamming the benefits system, why not ask the doctors for a report on them and how they are doing? they should watch them, assess them on a 6-12 months basis. Osbourne is ruthless and relentless some of the conservatives would never ever manage on some of the benefits or wages these people have to endure or should I say the benefits they have not now got. They live in a world of poverty. What about this spare room tax as well. How much more are we going to allow him to do to us???? The conservatives are all right Jack they have a wonderful pension and a wonderful wage, what do we have? Absolutely nothing, a pittance, it is them to blame and no one else. He can give billions away to people and countries abroad who are nothing to do with us and he is now spending millions/billions on the rail system?. We are still expected to put to Children in need etc but where is all the money that they send going? He goes private probably for all his NHS treatment, gets in quicker and better service. Now he has a bill from the EU for so many million. So where is all this money coming from, I will tell you, it is coming from US, we are paying for all this. Even the Doctors and Nurses who come here to train, they are all going back home or to other countries to work because they are better paid or it is a much more rewarding job. We can't keep anyone here or any business, it seems they are all moving abroad because they do not get taxed as much as here, it seems it is all owned abroad. Also when is David Cameron going to wake up and smell the Coffee? Your taxed on nearly everything you buy, your wages, your housing, your food, your pensions and a lot of other things I am to angry to put down and I am not the only one. What next. This is totally unfair to every English Person in this country and it all has an impact on everyone of us. Sorry but I am so angry about all this. This is only part of it, but I must stop as it is causing me stress.

  • Hi Dland - you know you're right about everything you have said & it's very scary knowing these facts. You must try to turn it all into a positive to counteract the detrimental affect it's having on yourself and many many others. I'm not a political beast as I have a conscience, feel empathy for others & care about them as it's clear that you do. There's a quote somewhere from Gandi "I'll let no man walk across my mind with dirty feet", (but don't quote me as I prob haven't got it 100%). So let's start with ourselves as many have become even more ill & even died awaiting diagnosis & treatment. The stress itself has killed many. I'm not certain of the numbers but there's a benefits & works site that reports on facts & makes very sad reading. It's also trying to empower us tho' . eg through one site I was recently asked if I would donate £15 to enable the Labour Party to open a 'wing' that would act for Disabled people (that was my understanding of the blurb). How could I when all the changes to IB etc were initiated by them & left the Conservatives running roughshod over so many peoples lives.

    What is apparent to me is that we have a very strong membership on this site. With an excellent amount of experience on 'the negatives' that have been created for the majority ----surely we must have some sort of input to at least Start to make some kind of impact on todays governments. I don't know how, & not afraid to add this !!! Ann

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