I have been a lifetime athlete now 78. I developed aflutter 4 yrs ago and was cardioverted eventually. I am now excersise intolerant and intolerant to the drugs and now persistant and on a waiting list for pace and ablate procedure.
Meanwhile we have worked out a way of controlling the arrrhthmias to a degree by taking 30mg diltiazem before bedtime and when it wakes me up during the night and when things deteriorate during the day. i have very few days when i feel sort of ok . life is not nice like this. getting sufficient slleep is a huge problem.
Anyone out there who has had the pace and ablate or can point me to some online personal stories about it. Thanks
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Alphakiwi
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Hi - I had reached the end of the normal treatment route ie: drugs I couldn’t tolerate and 2 ablations and was well on the way to becoming persistent. I have a another condition which deteriates quickly when in AF so my options were Amiodarone - with all it’s many affects - or Pace and Ablate.
My EP was of the opinion that I would benefit from dual pacing or what is called re-synchronisation therapy as a Pacemaker but had to fight to get the funding for me. Eventually done through the NHS after a 12 month fight over funding. My EP explained to me that when a pacemaker only paces one ventricle there is the risk of the ventricles going out of sync and this, may eventually, cause heart failure. Because I was relatively young, at the time then aged 67, he believed the risks of this happening for me were quite high.
From the moment the Pacemaker started working I felt SO much better, even though the Left Ventricle lead was misplaced and I needed a revision 6 months later. Because I had to wait for the revision the AV node Ablate was postponed but 6 months on I hadn’t had one AF episode - until the disconnected the leads to reposition - straight back into AF. Lead repositioned, felt even better! AV node ablation cancelled!
That was in Oct 2018. I’ve felt 2 minor AF episodes both when I had a bad chest infection since then, both episodes were a symptomatic so although I could feel my heart thumping away, I didn’t have the debilitating symptoms I used to have and pulse remains steady.
My take always were:- why did I have to wait so long and go through such misery to get this result? Why is it not used more often, more quickly for people for whom drugs and ablation doesn’t work?
Ensure you have a very experienced person inserting a dual chamber pacing PM as the 2 lead is a more complicated procedure and the LV placement can be a problem.
For most just the Pacemaker alone will not cut it, although my EP says they had about 6 patients in 2018-19 with similar experiences and you may still need to have the AV ablation in which case you will still feel AF - that does not cease - but because the connection between the atria and ventricles will be 90% severed, then your pulse will remain steady and symptoms will be reduced.
There have been 2/3 posters recently who just had the procedure so hopefully they may respond?
PS - I now sleep like a baby most nights and that has also improved my health & QOL more than anything. I need to sleep with CPAP though, less for the AF now, more for my other condition.
Hi Dreamer, I have now been offered a pace and ablate and am on a waiting list. I have AF about once a week and at 150 bpm it is very debilitating but in between I a am fine and active and healthy. My EP feels this burden of AF is too high and could cause HF and I can not have another RF ablation and all medical options are exhausted except for amiodorone which I have refused.I have accepted that this procedure is probably inevitable now but don’t want to end up in HF anyway because of dysyncrisity between left and right ventricles. I have been told that there will be two wires but this could mean one in the atria and one in the ventricle. I am only having telephone consultations so didn’t get the usual diagrams to go with the explanation!
I am 65 so would be in the same position as you.
Did you have to fight to have the dual chamber as opposed to the single one?
Thre is no further appointment set up to discuss the type of pacemaker used and I wish I had asked this question at my consultation but it didn’t occur to me at the phone consultation.
Alpha kiwi, I am sorry to have hi jacked your post! If I get any answers to my question, I hope they will help you too. X
Yes, had to fight very hard for funding. Or rather EP did! My health insurance wouldn’t pay for it as in NICE guidelines it is approved for those IN HF.
My EP’s view was very much - why wait until you go into HF? His advice was for me, wait until he got the funding which was a wait of 12months+.
Every case is different & my Mg enabled his case as I found several studies of how many with Mg also have arrhythmias, about 1/3. When in AF my Mg symptoms were ver disabling. Hope that helps.
The difference in costs are £6k for PM, are synchronized PM £18k to NHS - £24k on private. I am blessed with EP who cares & fights.
Yes thanks. I live in South Wales and we all know that there is not much funding !! I will have to try though. I bet he does it in his private clinic !
Also know that there is another skill level to placing this device so you need someone competent - not every cardiologist or EP has the skill level. My own EP referred me to a person to do the procedure - unfortunately that’s not who I got so the first placement was a disaster and he used staples to close - a no, no for heart procedure. They are no longer working in that hospital. What I’m saying is - that’s the gold standard but nit everyone will get gold - even so silver and bronze are still medals.
Sorry, family going for Olympic qualifying this next few weeks so all talk about medals!
Unfortunately a COVID outbreak meant a good proportion of athletes now in lockdown so one came back just prior to lockdown, they were in Bulgaria & Hungary, & the other isn’t on the list so we assume in Lockdown. This would be their 3rd Olympics so unless they have medal prospects they wouldn’t go. - hence all the craic on medals!
Just heard - they are safe but withdrew believing not worth the risk & team are headed home. Feel so sorry for all the athletes who train for so long - 5 years for this Olympics. They both are understandably upset but one already has a qualification.
I had 2 ablations during my 73 year (now 77) unfortunately the 1st did not completely cure my Permanent Afib. Still take antiarrythmic drugs as a deterrent as unfortunately get a few breakthrough runs and also PVCs . A routine procedure these days for cardiologists who are electrophysiologists. Takes about 2 to 3 hours incl prep time. It takes up to 3-6 months to prove the ablation was successful and you may experience limited Afib during that time. Flutter is generally more successful to ablate than irregular fast Afib. All the very best.
I had this very recently i.e. LV node ablation was done just 5 days ago, and pacemaker fitted 1 month ago. My HR was a constant 150/min and was very irregular. My stats changed instantly: HR now 80 and regular rhythm, blod Oxygen saturation up from around 92% to 95/96%, BP up to 120/70 (having been around 95/60 for years). My medication (Diltiazem and Digoxin) have been ditched and the side effects are reversing i.e. oedema almost gone, skin not so dry, mouth not so dry etc. Best of all I feel so much better and it's very early days. When I go to clinic in 3 weeks time the HR will be lowered to about 60 assuming everything is ok. I have a Kardiamobile which has always given my result as 'possible atrial fibrillation' but now consistently tells me 'normal'
I had AF for 20 years and 5 ablations, of which only the first one helped. I had a Pace and ablate in 2019. My heart went into permanent AFlutter after that. I also had an episode of VT which of course is more serious. After a second episode of VT in Jan this year - which conveniently occurred as I was walking up the stairs to the Cardio Dept. - I had an ECHO which showed an impaired LV function and heart was out of sync due to 100% pacing.
All this has been quite difficult to accept especially as so many others have no problems with a Pace and Ablate procedure. Anyway, two weeks ago, I had a CRT -D implanted which should resynchronise my ventricles and provide a defibrillator should I need it.
I think I have been unlucky and things might have been better had I had the two leads implanted in the first place.
I am part of the way through the process. I had a 3 lead CRT-p device fitted 6 weeks ago but it is not turned on yet. I am waiting for the phone call to have the node ablation and grand switching on. The reason why I had it was because I went into persistent AF in Oct last year due to stopping fleccainide which had sent my HR down to 30bpm. It has been stuck at 135-155bpm ever since despite having meds added in and doses raised. I have been in and out of hospital and from about Nov started suffering HF symptoms. I had explored every other option and really did not want this but there is not much of an alternative so have got my head round it and hoping that as soon as it gets switched on, it will make a difference. So many people had positive things to say about the procedure when I was researching it, that I felt encouraged to take the step when I was offered it. I hope this helps and that you get respite from the AF soon.
I had a pace and ablate 18 months ago - pacemaker was already in place with one lead to ventricle and one lead to atria. My quality of life leaped from about 20% to over 90% immediately. My personal experience therefore is that it was so worthwhile, for me, I am so grateful that it was available. Good luck!
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