Monday, September 16, I’m getting a dual lead pacemaker and AV node ablation.
I believe in the power of positivity and optimism.
Could some of you who have had success with this procedure tell me about your good results? I can read and re-read them when I’m in the hospital after the procedure.
If there’s anything I should be on the alert for post-procedure, could you let me know?
Quickly, I was diagnosed with afib in 2020, but I now know I’d had it long before. I’ve had a number of drug regimens, two ablations, and nine cardioversions. I’m drug refractory, the ablations failed, and cardioversions now last a maximum of two weeks. I have a Watchman.
I and my EP see pace and ablate as my best way forward to gain the quality of life I’m seeking. I’m 82 and otherwise in good health with no co-morbidities. I’m so hopeful! And oh so ready to put this afib merry-go-round behind me and resume a life in which I actually might get my oomph back!
Your thoughts would be appreciated. This is a wonderful forum full of great people whose lives have shared stories.
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Sweetmelody
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As I'm sure you know already, the PM will be fitted and then the AV node ablation maybe six weeks later once the PM has settled and is checked out and working well. It won't stop the AF which can continue in the left atrium while the left ventricle is controlled by the PM hopefully restoring your vavavoom. The AF may still be going on whilst not affecting your Heart rate.
I’m having both at the same time: implant and ablation. I understand that frequently the implant is done first to make sure the pacemaker is working correctly, followed some weeks later by the ablation. My EP and medical center do both at the same time, as is another option that many medical centers in the U.S. choose. Quite honestly, I’m glad both are being done in one procedure. My EP, nationally known in his field, has performed this dual procedure many times over many years. (I asked.). I trust him. I know my atria will continue misfiring, but my ventricles blessedly won’t know that. (-: And am anticipating getting my vavoom back! Thanks for your response.
I thought you probably aren't in the UK. I've got the pacemaker and waiting for the ablation! However, pacemaker was not put in for "pace and ablate" that's a procedure that's been agreed on after the pacemaker was "inserted". I found it really helpful to go through the archived posts, all very positive. Good luck, I just want mine done but there's a waiting list on the NHS and I'm not sure about getting it done privately as it could be very expensive!!
“I just want mine done.” Exactly how I feel. I understand your eagerness! My procedure was originally scheduled for late October, two+ months out even on an expedited schedule request from my EP after my 9th cardioversion failed in 2 weeks and the decision was made for pace and ablate. But just six days ago I got a call that there was an opening this coming Monday. I grabbed it, gratefully. I wish you a similar aligning of the stars to get this “done!”
Hi, I had pace n ablate and a 2 lead pacemaker inserted in the same procedure back in 2022, struggled ever since.Unfortunately its been a negative outcome for me and I now need a 3 lead CRT pacemaker due to developing heart failure, I also have permanent AFib and now need various meds.
Read some good positive posts about the procedure so please don't take on board my negative experience.
I have no experience of either(yet!) But my dear mum did ,and was so much livelier and her old self afterwards. Your positive attitude will help such a lot. I wish you all the best for Monday.
Oh mum had a second wind! All the very best. My Nanna ,(mums mums).said " look,while you are on the right side of the grass ( i. e above the grave) you're doing OK"
Hello there, I had the Pace and Ablate done 6 years ago at age 70. I was in AFib for 19 years and thought I was going crazy. It felt like a Mexican jumping bean in my chest. I had cardioversions so many times I can’t remember. All the combo of meds didn’t work after some time. I was very concerned about having A/V node ablation, yes. However I didn’t know how much longer I could have gone without it. If I walked from the living room to the kitchen it felt like I ran a marathon, always out of breath. It was so severe with me.
Now the good part, I walk my dog twice a day for 40 mins, exercise at the gym and can finally dance again. My AFib is only recorded at 2% but I can’t tell anymore, truly.
My husband died Nov 2021 and honestly I don’t think I would have survived the grief and heartache if I was still in that awful jumping bean mode going on in my chest. So good for you and don’t be afraid. Remember you shouldn’t lift your left arm above your head for 6 wks and don’t lift anything heavy. You’ll be so surprised and feel like a teenager again. 😁 Best thing my EP did for me. Bless you and try not to stress about it, you’ll feel great after a couple of weeks or less.
I’d love to feel like a teenager again! I’d love to feel 65 again for that matter. (-: Thanks so much for sharing your story and advice.
I’m sorry about your husband. I think your surmise about how your heart might have been affected could be right. I lost my husband in 2020, which is the year my afib took off. I think there’s a connection between a “broken heart” and afib.
A jumping bean in the chest is a perfect description. Mine is jumping at around 125 jpm this morning. I’ll be glad to see rear end of both tachycardia and bradycardia! Thanks so much for your response. I’ll save it and re-re-read it.
Sweet melody, thank you for your response. You write well and an enjoy to read.
So you also lost your husband, very sad also. It takes sometime to adjust so I know the pain.
You’ll be amazed how much better you shall feel after the procedure. I’ll be following you and check in once in awhile. In the meantime, good thoughts Sweetmelody X
hi, I had a dual lead pacemaker fitted in December 2022 after a CA - I have no episodes of AF since, although I have now developed Heart failure, I’m sure you will feel much better! Good luck!
Best wishes to you from across the pond. It has been mentioned as a possibility for me owing to my low heart rate. I have only read positive things about it, so I feel confident it is a good way to go. My neighbour's sister had one a few years ago and remains in good health.
I’ve followed your posts, Steve. It sounds like our histories and situations are similar. I finally said to my EP that it seemed to me we’d tried just about everything so might we go to pace and ablate? Yes, I was proactive. He was immediately open to it. We made a joint decision. He agreed that we’d tried all the protocols and my afib was still vigorous and tenacious. I think the capper was that I couldn’t stay in NSR for more than 2 weeks after a CV, even when on drugs and post-ablation. It just wasn’t working. I believe I have no choice left but a pacemaker if I want a good QOL in my remaining years. I know the wisdom of not putting all one’s eggs in a basket….but there they are. I had a great appointment with the EP NP yesterday. Very reassuring. Especially the part about I won’t drop dead if the pacemaker goes wonky. (-: I’m always learning about the wonders of how hearts work and the wonders of modern medicine.
Thanks for responding. I wish both of us afibbers well! 💓
I wish you well - and fully expect you to feel it is a great benefit once it's all done and dusted. Your reasoning is impeccable and you seem to have an excellent specialist looking after you.
In my own case, my symptoms are not so bad these days, even though the whole ectopic / AF burden has greatly increased. My heart rate has fallen while in AF and this certainly has helped the way I feel (and stress...) about it. I am waiting for an ablation over the next months for both AF and ectopics but I am even wondering whether to try to cope with things as they are. I'm going to seek to my GP about this soon, and then possibly the cardiologist / EP. I am slightly swayed by having a good but now elderly friend, of 91, who has had permanent AF for very many years now, but with a heart rate around 85-90. In AF, mine rages from 85-130, sometimes 150bpm.
I’m glad your symptoms aren’t so bad right now. Mine neither, thankfully. Your heart rate ranges and mine are identical. For now my HR, after the last CV failed several weeks ago, has stayed pretty steady around 122, its apparently favorite number. I don’t do anything drastic like go to the ER if it stays under 150. I avoid my beta blocker because while it lowers my HR into the 90’s, my heart rhythm goes bonkers. Also known as Afib. If I stay in tachycardia, the rhythm is steady and I feel better not having my heart jump around like a drunk frog, going on rate spurts of 73-92-87-110-78, etc., while banging against my chest. Irregular irregularities to be sure. I prefer tachycardia, as long as there is an end in sight: CV, ablation, or now, at last, a pacemaker.
My understanding is that Av node ablation/pacemaker is used primarily for those with bradycardia, but it is also used for those of us with tachycardia—just requires a different sort of pacing settings, I gather.
Even though I can manage life with a HR of 122bpm on average and my symptoms aren’t all that bad for now, I'm just tired of dealing with afib and everything that goes with it. I want my life back, a life where my days don’t revolve around fatigue, pills, afib triggers, on and on. I feel totally comfortable with my decision, though it took a bit to get here.
There’s no one right way, so we just do our best. One solution does not fit all.
What an interesting story! Living with a heart rate of 120+bpm sounds interesting! A pacemaker can only increase the heart rate, but, I am guessing the ablation of the AV node will drop it to a "base rate" in the low 30s, which the PM will then increase as required.
I think there's a good chance that it might well truly transform how you feel in general, myself. Let's hope so.
Actually, a pacemaker can set a ceiling on bpm’s. If my heart wants to go too fast, for example while I’m sleeping, it will say “No. You’ve reached your max resting rate.” But when my heart goes fast because I’m climbing a hill, the PM senses that and says “Okay, I’ll let your HR meet the needs of your physical exertion,” and my heart can go above the normal ceiling. Isn’t that amazing?!
Right. The AV node has to be decommissioned for the pacemaker to control the acceptable range of both lower and upper rates. A pacemaker alone is more often used for bradycardia, to urge a sluggish heart on to pumping a little faster. At least that’s my primitive understanding.
For someone like me, whose electrical signals are fairly haywire and plunge me alternately into atrial fibrillation and atrial tachycardia with a bit of atrial flutter along the way, bradycardia is not my problem—unless I’m on soul-sapping drugs. We need to decommission my atria and just let them do their thing, separate from the actual pumping of blood out through the ventricles at a steady rate in a steady rhythm—which is what my new battery will accomplish. At least that’s the hypothesis. (-: Never know!
Love your very intelligent insight and information re: the A/V node ablation process. I'm due for one October 1, and would be very keen to hear about your experience.
Now you've got me curious. You're a writer. How fascinating, but I guess not a good idea to publicly reveal your identity.
Hi Steve, this new system appears to provide a more equal handicap, not sure everyone uses it correctly. When winners of Board comps win with handicaps of over 25 not fair to the 18 and below golfers.
I play at Worlebury Golf Club which is a friendly and attractive course in North Somerset
I have a dual lead Pacemaker. Unfortunately I’m not a candidate for an ablation. My team did try for 7 hours. They did quite a few other bits and my a full MOT wile they had me
All the best sweet melody. I have the dual PM but once it was in i was handed over to another cardio who decided to not proceed with the AV node ablation. Its 3 years now on multiple drug trials as usual for the last 6 years. I look forward to hearing of your success.
I’ll let know. I have no concerns about the AV node ablation after educating myself and getting thorough explanations from my EP team. It does seem a bit radical, but the results promise to be what I’m looking for, part of which is being drug free. I’m glad drugs work for you. That’s a simpler solution. Good luck to us! 🍀
SWEETMELODY im not happy on any drugs actualy. I have dried them all. My Cardio told me i had no more choices really. I said at 82 years of age im not concerned about not having a node. He said using cycling as an analogy that its better to have 5 gears still rather than 1 gear. So looks like hes not on the side of node ablation. Quite frankly ive had enough like tonight im in bed at7pm feeling nauseas as. Palpitation kicks in the heart regularly which gives me headaches and memory probs. Can no longer go to my gym or ride my bike. Yes i was top cyclst here and ran marathons and track in my early years.Im going to have a go at writing to my cardio of 3 yrs ago who told me the only solution for me was pace and ablate because i have a left atrium twice the volume of normal.
One thing I have found during my cardiology adventures is that cardiologists do not all agree but each thinks they’re right.
I’ve sort of divided them between the chemists and the construction workers, like electricians and plumbers. I came down decidedly on the side of the construction workers because I am looking to have the substrate cause of the problem fixed so I can get on with my life. Maybe drugs fix the problem for some people, but I definitely am not one. Drugs make me feel worse than the afib and have jumpstarted both high heart rate arrhythmias and soul-sapping bradycardia. I don’t like them nor trust them. All drugs have negative side effects (especially the dreaded and dreadful amiodarone).
One cardiologist told me it was crucial for me to be on statins. Another told me I was fine without them. One told me a Watchman was just a moneymaking marketing ploy (honest, that’s what he said) and a lifetime of DOAC’s were all I needed. I rejected that. I do not want the constant risk of internal bleeding and the constant bruising along with a drug that has other side effects if there is an alternative. My trusted EP suggested a Watchman, explained it, I researched it, and I’m thrilled to have it.
After I get the pacemaker, I’ll be off ALL drugs except baby aspirin, which hardly qualifies as a “drug” compared to what else I’ve taken for my heart. With a Watchman and a pacemaker, I expect to be good to go. I’ve left the chemists behind and appreciate the structural remodeling of a heart that wasn’t working right. I know not everyone on this forum sees it this way.
I went through 3 cardiologists until at the end of two years I found the magic 4th, found the one just right for me. It takes time and persistence. She and I connected, basically because she listened and worked in partnership with me to problem solve. And she’s the one who connected me with my EP, who is at the top of his field—something she knew but I didn’t at the time. I’m exceptionally grateful to her, My EP is the perfect one for me.
All of that is my way of saying one needs to get more than one medical opinion and to keep looking until you find a provider you truly like and trust.
The bit about bicycle gears doesn’t make sense to me if the five gears aren’t working properly and the one gear can change your life much for the better. Keep struggling and puffing up hills with creaky gears that don’t work or get in gear to ride smoothly to the top? A no-brainer for me, because I am sick and tired of being sick and tired. There are no guarantees in life, but when the odds are good for a good outcome, I’m all in.
I do wish you well. You’re mid-journey right now. I hope the next steps give you progress towards a happy destination
I was put on amioderone 3 years ago for 11 days. At 11 pm i felt deadfull and got up ad found bp was way up called ambo 10 mins later. I flat lined in the ambo and the officer thumped hell out of me to revive me so he said later in the hospital. No i have had enough of many drugs. Even the anticoagulant is difficult making me nauseas. I will be contacting my cardio of 3 years ago who was responsible for having a pace maker put in 3 yrs ago. AV node ablation was not done as i was handed over to an anti node ablation cardio . I have now decided to i shall pay to see the original and hopefully he can put me back on the public system afterwards. All the best for monday
I wish the best! We have to be our own advocates for sure. If I weren’t, I still be with the cardio fellow who sort of brushed me out of his office with ,”Here, take these pills and see me in 12 months.” I fired him. My own research had already led me in the direction of needing an ablation. When I brought that up to explore the idea, he apparently thought I was a an untutored child who had no idea what I was talking about and just smiled indulgently, prescription pad in hand, readying to say, “Next!”
I know that people have success with a pacemaker without an AV node ablation, but I believe that’s for issues unlike mine. And perhaps yours. I’m getting the node ablation because my atria are incorrigibly bonkers.
Amiodarone is a Really Powerful Drug! And an awful one. My experience was nowhere near as scary as yours, but that drug left me feeling like vomit. All day long. No, I didn’t vomit. I just felt like vomit. Awful. My HR stayed right around 43-55 for five weeks. Okay, it got me out of serious afib and 170bpm—I’ll give it its due—but the bradycardia and myriad side effects, and after doing my research, led me to insist to my EP that I did not want to take it any longer —but said I wouldn’t stop until he agreed. He listened. He heard me. He waited several days for the post-Watchman TEE as scheduled, which was successful, and then stopped it. I would never go back on amiodarone again unless it truly was life or death. It wasn’t.
Good luck! You’ll find the right provider for you. One that LISTENS.
I asked the cardiologist I see about the strange memory issues and also about feeling a bit "distant" and he explained exactly why it happens. It really is an unpleasant condition overall, and, like you, I get nausea on occasion, sometimes for months at a time. It's an awful feeling to have and to try to put on a brave face with.
“Brave face” describes it! Most people don’t have a clue that I’m slogging through fatigue and lightheadedness to seem and act like my normal self. But I think my “brave face” benefits me I can forget that I feel like ctap for awhile.
I’m waiting, eagerly, to see the exact and even minute differences a pacemaker will have on my “distant” feeling, my sloshy brain, my energy, my capacity for joy—lots of little signs that I feel about things not being quite right but are hard to describe, things that make me feel not quite myself, my old self as I know her. I think I’ve gotten used to feeling not quite right, without always being able to put my finger on it.
I believe maybe these little changes for the better are possible because that’s what has actually happened at times immediately after a cardioversion when I “just know” I’m back to feeling like myself. A cardioversion can feel like a miracle. Too bad they don’t last. At least mine don’t. And then if I’m drugs post-cardioversion, that screws up how I feel.
But I have experienced walking out of a cardioversion in perfect NSR and not on drugs, and feeling like a kid again, like the fit, healthy, young person with a solid, strong, happy core I knew myself to be once. For a little while.
When my heart is right, the rest of me feels right. When my heart is out of sorts, I’m out of sorts. That’s my experience. That’s why, after trying everything else, I’m eager for a pacemaker. I want that old self back, at least a goodly part of her! This, at this point in my long afib journey, is my best chance. But who knows….?
You have completely described my situation. I have incessant insomnia, too, which adds to my woes. But I always "look well" and so people think I must be. I suppose I prefer that, if I am honest!
I've had AF on and off for 15 years or so. Learned that a lot of former endurance athletes have huge left atriums and AF. I was a long distance bike rider for many years and have a huge left atrium. Am set for an A/V node ablation and CRT Oct. 1
I am now on my second pacemaker - wore the first one out,!! (Not really) had my pace and ablate 9 years ago. Best thing I ever did in regards to a fib. Even though my heart is still in crazy a fib, I can’t feel a thing.
I love it! Love the words “best thing I ever did.” I understand my atria will still happily go about their way, misfiring at will—but my ventricles will not be apprised of their chaotic whimsy. I’m good with that. (-: My EP explained the afib would stay the same, get neither worse nor better, but it wouldn’t matter. My atria can afib away to their heart’s content and I’ll still be in NSR, ventricle-pumpingwise . Sounds good to me. Comments like yours lift me up. Thanks!
I had the PM implanted in July 2023 then in Nov the AV node ablation, not regret. AF still there but no more symptoms, no more meds for that just an anticoagulant… and finally I have good sleep and feel better all around. It took me about three months to get the PM setting to the right rate, though. I’m 86 and satisfied for I took the last resort solution. Hope this help you to decide, and all the best.
Thanks for your reply. I understand getting the right settings could take a bit. I guess I’ll learn more as I go along. “…good sleep and feel better all around.” I’m delighted for you and hope to join you. Just exactly the words I need to hear. Thank you! I’ll be 83 next month—which is one of the reasons I wanted what can be considered a last resort solution, and wanted it now. After four+ years of up and down and all around and around with afib, I just want to get off that merry-go-round and enjoy my remaining years, just like you. Good for us spring chickens for giving it our best shot!
Good luck for Monday, Sweetmelody! Reading everyone’s replies - and your own comments too - has been uplifting and inspiring! Looking forward to hearing about it all, and the new lease of life you’ll soon be able to enjoy ☺️💓
My first PM lasted 11 years, had my second switched out in April but with the old leads still being used. I have some very persistent afib happening now and was about to have an AV node ablation but they found out that my lower lead wasn’t functioning properly. I’m on a trip now and on meds but when I get back my cardiologist will put in a new lead and I’ll have the AV node ablation. I know how you must feel… can’t wait to get off the Beta Blocker and have more oomph! Good luck on your procedure, I’m right behind you!
I’m glad for you! And me. It just seems like absolutely the right way to go after slogging through the swamps of afib for years: drugs, cardioversions, echocardiograms, drugs, MRI’s, drugs, atrial tachycardia, ECG after ECG, drugs, bradycardia, atrial flutter, CAM monitors, EP appointments, cardioversion skin burns that itch like hell, drugs, TEE’s, ablations, drugs, plus Apple Watch and Kardia diagnoses all over the map stalking me (I probably shouldn’t look, but I do.) And I can’t ignore the dozens, dozens! of times I’ve been stuck with needles in search of an elusive vein. Heavens, would I like to leave all that behind. Annual pacemaker check-ins seem like a breeze in comparison. I also like that my heart will be monitored from afar every day to catch anything that might be the slightest amiss. The latest technology in pacemakers is amazing.
Believe me I understand about wanting to get off beta blockers. I’m off now, happily so. I feel better with mild but certainly noticeable tachycardia than I do with a slower rate on beta blockers. Go figure, but that’s me and we’re all unique in our own peculiar ways.
My #1priority in my decision-making is QOL for my remaining years. For me that means being OFF DRUGS among other things. Drugs drag me down. I’m counting on a healthy lifestyle, which I have, to support my “reconstructive surgery.” (-: With a new battery to energize me? ⚡️
Good luck to us! The positive responses on this forum have been invigorating. Whenever I read “best thing I ever did,” my confidence in my decision leaps. I’ll be looking on the forum to see how things are going for you. Best wishes.
I slogged through those same awful swamps for 15+ years, and now am very happy to have the P/A ablation option awaiting me Oct. 1. I am 75, and had my first terrifying afib attack at 46 after completing a 100 mile century bike ride. Years went by before it happened again, and then it was on to the full suite of awful meds, acute heart failure caused by allergy to one awful med, CV's, ablation, TEE's, etc., etc.
I'm just curious. Besides being a writer, were you ever an endurance type athlete?
So many former athletes end up with giant left atrium and afib it seems.
Me? No, not an athlete! Though I can type really fast. (-: And do have a somewhat enlarged left atrium, but I very much doubt it’s from that. 😉 I’ve heard athletes are susceptible to bradycardia, but truly I know nothing about the topic.
October 1 is not far away. I’ll have a report by then. Hope it’s a good one! Like you, I just cannot keep slogging through the many afib et ceteras, on and on, from CV to ablation to, etc., etc., etc.
I’m not even nervous tonight, the eve of the procedure. Just eager, as another responder said, to “get it done.” In 18 hours from now I’ll just be waking from the anesthesia. I wonder what my first question will be…
The thought of getting rid of cardio drugs is in itself enough motivation for me to “get this done.” I was wondering if I could dump them all on a ritual bonfire, or would that be toxic to the environment? I guess I’ll do the right thing and take them to a proper disposal place for extraneous and unloved drugs.
Yes, I wrote for a living, retired now. I love to write. “I write so I know what I think.” Joan Didion said that. I couldn’t agree more. But it’s best to remain anonymous on a social media health forum. I’m not celebrity famous, so you’re not missing anything. (-:
Writing on this forum has been very helpful for me. The kind and caring support I’ve gotten is much appreciated. I know I’m not alone. Your experience is very much like mine. You understand. This is the place we can air our concerns and share our stories. It’s a wonderful forum. Thanks for responding!
Hi SWEETMELODY. By now you will be able to let me know how your Pace and Ablate is going i guess. Im looking forward to hearing from you as my private cardiologist is going to do tests on me on the 10th to see if there is indeed no other choice for me but Pace and ablate. Best regards Colin New Zealand.
I feel better already, after only two weeks. I feel like myself again. No more drugs. No more cardioversions. No more ablations. Whew and hooray! My heart is beating steadily like a champ. I’m sleeping well. I’ve started to increase my exercise. I don’t have brain fog anymore; a little dizziness, but that’s multifactorial and different from brain fog. I’m thinking absolutely clearly and speaking articulately. I was losing those abilities on drugs and in nearly constant tachycardia interspersed with crazy periods of erratic afib between ablations and cardioversions. The Afib Circus.
I see a light at the end of what’s been a very long tunnel. I’m still in optimistic-wait-and-see mode—for another couple of months at least. By the end of three months I’ll know more surely that I’m good to go.
For me, having a pacemaker and Watchman is the cat’s meow! Together they set me free from Afib. At last. (I hope…..no guarantees in life, but so far, so good.)
Good to hear from you Franny50.I have a 2 lead pacemaker 3 years ago with intensio to have pace and ablate. I was keen as the drugs i just cant hack and most are innefective on me. After the pm was put in i was to wait 5 weeks and get the av node ablation. I was handed over after to another cardio who never went ahead. I have just this day wrtten back to that cardio of 3 years ago so now i await reply. Will let you know.
Hoping to hear your P/A went smoothly and you are on the mend. I remember it took several days to fully recover from the pulmonary vein isolation ablation to the point I wanted to chat or socialize. Ditto for P/A probably. Best regards!
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