upper limit of pacemaker

Can anyone out there throw any light onto why, two weeks post AV ablation, I am still so prone to exhaustion. I am off all medication except Warfarin. If I exert myself, just moderately, I get very quickly out of breath and very shaky. A couple of times, this has been almost to the point of collapse. My pulse never seems to change from the 80 bpm that it registered immediately post-op. Is it possible that I am becoming so exhausted because my pacemaker has been programmed not to go any higher than 80 bpm? I find it so strange that my pulse always remains the same, whether I am resting with my feet up or struggling up a flight of stairs, although I am otherwise affected so differently. I am in France at the moment so I am unable to query this with the UK cardiology department who did the ablation.

23 Replies

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  • I'm not medically qualified but what you say seems logical as your pulse needs to rise to ensure blood flow is sufficient for exercise- think you need to ring the pace maker staff if you can and in the meantime take it easy!!

  • Thank you, Rosy. I was a bit naive, perhaps, in expecting instant rejuvenation but this is carrying it just a bit too far in the other direction. I have no option BUT to take it easy but it is frustrating, particularly after having had to wait so long to get to this point of what should be improvement.

    Thanks for such a quick answer!

    Jos

  • Hi jossikins,First of all take it easy,It,ll be at least three months before your ablation settles down and the scar tissue where they did the ablation hardens off to work properly.When did you have your pacemaker fit,I had mine done June 2013 and have had it checked three times now,after each check as i was doing well they altered it slightly so my PM was doing less and my heart was doing more.It,s a long slow job,just try walking a short distance and slowly build it up.I now walk 3.5 miles every day if i can weather permitting and slowly but surely things are getting better.Good luck just remember to take it easy for a couple of months

  • Hi, and thanks!

    I AM taking it easy because my 80bpm won't allow me to do otherwise! I am only puzzled as to why they would set my PM to such a low level and not inform me, particularly as they know that I lead an active life. Both the specialist who did the ablation and the referring cardiologist who saw me immediately post, remarked that I was going to have so much energy NOW - they didn't say three months down the line! It was only when I hit this 80bpm upper barrier that I realised that one cannot do any exercise, even the mildest, without an increase in oxygen to the muscles involved and that is concomitant with a faster heart rate. Ah, well - it will all have to wait until I get back to the UK and patience is not my greatest virtue! Thanks for your interest.

    Jos.

  • Two weeks is nothing! You are trying to run before you can walk. Slow down and enjoy the view. Don't start worrying till you are like this in three months. You have had some serious goings on in your heart so let it heal. PLEASE.

    Bob

  • Thank you, Bob, for your wise words! I guess I was expecting to be running on top gear by now. It was certainly the impression I was given. My gripe really is the fact that I have not been properly informed as to what to expect, what my physical limits might be, what I could or should do or not do, that I would even have any limits. I realise now that it is probably my PM being programmed to an 80bpm upper limit that is restricting me to a mere crawl at present, never mind walk! Which is probably also why my hands have been so shaky , that I probably don't have some underlying problem that the Sotilol has been masking all this time, as my GP suggested. I will continue to crawl, albeit with reluctance, at least until I get back to the UK and can query things further.

  • Yes I think we all go into these things expecting instant cure. I know I did and was mortified to find I wasn't instantly better which is the impression one often gets from doctors. I have been in this game for ten years. the last seven of which have been as a volunteer with AFA and most of my beef is about lack of honest appraisal from doctors as well as lack of understanding about the mental anguish caused by AF. It is one of those silent conditions where you don't look ill so people just don't understand what you are going through. This forums and it's previous iteration have been a life saver for so many people .

    Bob

  • Gosh, Bob, that was such a quick response from you, it was almost like having you in the same room!

    I wholeheartedly agree that this forum is a wonderful help. I am far less frustrated, having worked out the likely reason for my present problem through the messages and responses of iits participants, then I ever could have been otherwise, ensconced as I presently am, in a tiny, French, hill village!

    Thank you "mille fois"!

  • Oh the internet is wonderful isn't it? Some years ago I went over to France to stay with my sister in Champingy sur Veude and actually went into an arrhythmia on my way to Stansted to catch one of Mr O'leary's Boeings. I e mailed my arrhythmia nurse at Royal Brompton (no cell signal) and had a reply by return. I needed more tablets as I had only taken a few and her e mail helped me to get some from local doctor who could read but not speak English. When I landed back in Blighty a few days later I rang her and found she had organised a DCCV for the following Friday and all was back to normal in no time. I should point out it was atrial tachycardia not AF but the principle is the same.

    Bob

  • I do agree, Bob! Except that I have not brought my mobile and don't have any way of connecting with the consultant at my local hospital by email and, anyway, my hospital is definitely NOT the Royal Brompton. If I were to ring mine, I would get a recorded message and the only cardio nurse whose email address I have does not regularly check her emails. Anyway, Jack's explanation makes every bit of good sense to me so, as I am due to have my pacemaker "read" (and, I can now hopefully expect, adjusted) on the 13th of November, I will just play it cool until then. Doesn't mean you have heard the last of me though. Just watch this space!!! J.

  • Your so right there Bob--- in saying that it is a silent condition ,not like having a broken limb which one can see, even my adult children don't no what I am going through and I think half the time they think I am making it up, think they should read a few pointers on here. Oh and my eldest daughter thinks that I shouldn't be going on websites like this,so I don't say anything now. Take care and thanks for all your valuable help.Sann

  • I would ring your pacemaker people and check because 80 seems ridiculously low unless you're a bed-ridden 90 year old. Mine doesn't seem to have an upper limit set. I can get my rate well above 150 bpm although my normal 'exercising' rate is about 134.

  • Thank you, Kymdee - I will certainly make that call as soon as I get back to the UK. I am definitely not a bed-ridden 90-year-old. I am actually a comparitively young 75-year-old with a life in the arts, both craft and fine art, involved in both arranging exhibitions and selling. I am lucky enough to have a house in the Auvergne, in France, where I can cycle (hilly area!) and swim every day - or, at least, could. I do not drive so I cycle or walk to most places, that is to say I did. I gave up smoking some years ago and drink only moderately. If anything, I am underweight, though I eat healthily and well. but I am no crank. When I am not creating, I like to be proactive in life - so I have a fairly healthy balance in that at as well, or did. My doctors KNOW that I am still very active and more than capable of understanding whatever treatment they are considering for me, and I have always had things explained to me in the past, so it really surprises me that someone has set my pacemaker's upper limit so low!! It is also a bit insulting to my intelligence that it would be done without telling me. Anyway, this enforced inactivity is allowing me to get a lot of hand work done in preparation for Christmas fairs that I might otherwise have left until the last minute. So it's not all bad! Thanks for listening to my gripe! I have a few days of sightseeing in Rouens ahead of me. I will take it slowly (no choice there!) and savour every moment until I can get back to Canterbury on Monday and start the medical ball rolling again.

    All the best to you!

  • Last time I was in Rouens it was at the Circuit des Esarts for a Formula two race ---in '66 I think. Stayed in Clares at Cheval Noir. Happy days.

    Bob

  • Before they cancelled my Pace and Ablate I was told it would perk up if I needed more pumping? But I have a fast heart rate Average 125bpm at the moment. I would say that you maybe needed a bit more recovery time?

    Get well soon.

  • Most likely your pacemaker has been set at fixed rate of 80 after your AV node ablation. This will be the rate no matter what you do. This is standard after AV node ablation and allows your heart rate to "settle".

    Typically when you come back for review in 4-8 weeks they will drop the lower rate and add rate response. This will allow the pacemaker to gradually increase your heart rate in response to activity.

    There will be improvement to come!

  • Thank you so much, Jack!

    This is the most reasonable answer I have had and it all makes sense now. But, why, oh! why did they not bother to inform me, KNOWING that the first thing I was going to do in France, less than 2 weeks post op, was get on my bicycle?! And KNOWING that I had to be in London 3 days post op and would necessarily have a lot of stairs to climb (my biggest and most threatening obstacle on that day). My husband has had two angiograms and an angioplasty in St. Thomas's, in Lo ndon, and is scheduled for a rotablation at the end of next week. He was, and will be, given a printed list of what to expect post procedure and all the do's and don'ts and might be's and shouldn't be's and what if's. I was given NOTHING, no information, no advice, NADA. Only told by the two separate specialists involved that I would now have my energy back - not in one or two or six months, but NOW!! Needless to say, although I am incredibly grateful that I live in an age when all these things are possible and available, and to those who make them so, I am nonetheless just a little miffed that I have been kept so in the dark. Still, I can return to the UK next week suitably informed by good people like yourself and, therefore, armed. I am not militant but maybe I should be. The most encouraging words that anyone has ever given me regarding the aftermath of ANY medical procedure are your "there will be improvement to come!" Thank you again.

    Jos.

  • Hi Jossikins just a general observation, having to deal with the medical industry in recent years and listing to your story and others on hear it seems to me that if the medical profession has any faults (and they do) In my opinion one of there biggest let downs is a lack of communication with the patient. I find it so frustrating it drives me crazy. I hope you get things sorted out. The medical wheels of industry turn slowly.

  • Dear Grey-Power (that's the name of our quiz team!)

    Slowly? Tell me about it! It has taken 4 failed cardioversions to get me here, and the suggestion of a 5th that I refused point blank, having had the ablation dangled in front of my nose after the 2nd failure. I WILL get things sorted out. My frustration now, really, is that I have so many commitments leading up to Christmas, commitments that necessarily require a lot of stamina and energy, that I am really concerned with the possible consequences. Had I know what I was in for, I would have planned my immediate life differently. Now it is too late and I will just have to get on with it and do the best I can. I know that it won't be the end of the world if I cannot, but my personal and, particularly, my professional integrity are at stake, and I value my professional reputation highly.

    At least I now understand what is happening to me and, as they say, forewarned is forearmed, so I will be able to approach the medical powers that be with the confidence of knowing what I am talking about - thanks to this forum!! I had my suspicions by putting 2 and 2 together and working out a credible 4, but it has helped enormously to have people in the forum who are more in the know concur with me and give me their support.

    You know what? I have spent my considerably long life asking questions, always wanting to know the "why's" of things, sometimes to the annoyance of those who just want to get on with things, but often rewarded by being treated as the intelligent person I believe myself to be. This time, I am truly bamboozled because I have not had any reason, until now, to feel that any information was being withheld from me. As you say, it really does seem to be a lack of communication. I guess I can never change that but boy oh boy I can sure question it!

    Jos.

  • It took me 4 weeks to begin to recover from a GA after a PVI. 6 weeks to really turn the corner! I was exhausted could hardly walk up a hill my legs were like lead. I dragged myself around. I don't have a pacemaker but a GA really takes it out of you if you had one. Even having your heart messed about with is also exhausting! :-(

  • Hi Josskins, Ive thoroughly enjoyed reading all your posts and replies

    I had ablation on Monday and was given no advice or information ,

    I have gained so much support and advice from this site since the

    start of my af adventure its hard to imagine what I would have done

    without it. I was offered a pacemaker originally but decided to try ablation

    first, Im 77 and very active and hate not being able to get up and go

    when I want to. Do hope you get sorted out soon but you have been

    given lots of good advice here all the best. Shirley.

  • Hi Josskins, Ive thoroughly enjoyed reading all your posts and replies

    I had ablation on Monday and was given no advice or information ,

    I have gained so much support and advice from this site since the

    start of my af adventure its hard to imagine what I would have done

    without it. I was offered a pacemaker originally but decided to try ablation

    first, Im 77 and very active and hate not being able to get up and go

    when I want to. Do hope you get sorted out soon but you have been

    given lots of good advice here all the best. Shirley.

  • Hi Shirlygirly!

    I have only just read your post as I returned to the UK from France last night and this is the first opportunity I have had to access this forum.

    I am not far off 76, myself, so we are of an age. I have had on and off AF for several years now and have had 4 cardioversions, two of which failed almost immediately, while the other two lasted for a few idyllic months during which I felt reborn, I ahd so much energy! When I began to go into AF again after the last one (last September) I wore a heart monitor which indicated that my heart rate fell to 43 on one night and on the strength of that, I had a pace maker fitted last March, by which time I had gone into continual AF and my heart rate never fell below 110, so the PM remained dormant in my chest while I was reassessed. The result of that reassessment was an AV ablation 3 weeks ago (initially, they had suggested a 5th cardioversion but, for me, that was a case of four times bitten........) and I am now, therefore, PM dependent. My problem now is that my pulse rate never alters from 80 bpm, irrespective of what I do. I have tried running on the spot until I am breathless and my knees have turned to jelly and my whole body is shaking and I am near to collapse. My heart rate remains a steady 80!! I have asked somebody who is a cardiologist and very involved with pace makers generally, and he says that a PM cannot be set to an upper limit. But, expert or not, I have to question what he says because it just makes no sense to me. As far as I understand the normal functioning of the human body, an increase in exercise makes an increase on energy demands which, in turn, makes the heart beat faster to meet the body's needs. If it cannot beat faster, it cannot meet those needs, therefore the body goes into collapse. Which is what I am experiencing. So, I am bamboozled!! I am due to have a PM reading next week when I guess I will get some answers. Before that, I will visit my GP on Friday and perhaps he can place some light on it all. I will enlighten the rest of this forum world when it happens!

    Good luck to you, Shirley.

    Jos.

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