Apixaban and Ablation

[Karendeena]

Hi everyone, I am currently on a very long waiting list for Ablation. I have PAF with very symptomatic episodes lasting 30 hours approximately every 4 months. I take apixaban and sotalol but do not want to up the dose as suggested by my EP (I currently take 40mg three times daily).At the last visit to my EP I was told the risks of ablation but was surprised to hear that the risk of stroke during the ablation is reduced due to the fact they have ceased to stop anticoagulants during the procedure. Has anyone else heard this or is it perculier to my hospital and team?

[BobD Volunteer]

Anticoagulation is normally continued throughout and has been for some time. My third ablation in 2008 was my first without stopping warfarin. It is thought that micro embolii can be formed during the actual process of ablation which at best can lead to brian fog but may actually cause a stroke but that continuing anticoagulation prevents this.

[Karendeena in reply to BobD]

Thanks Bob

[DawnTX]

I don’t quite understand why you don’t do what your doctor tells you to do about your medicine. There must be a reason and I would listen to my EP before my GP as I have found my GP is not as knowledgeable as he tries to act regarding medication’s, that are not part of his lane so to speak. I have found doctors have different views on whether or not to stop medication’s and how far in advance. For my pacemaker it was three days I actually goofed and only did two and they had to check to make sure they did not have to postpone. I had a very aggressive procedure last April, and did not have to stop anything other than Metformin. Go figure. Is that

[Karendeena in reply to DawnTX]

My EP suggested an increase but said it I may not tolerate it as it's possible it would send my heart rate too low

[Dippy22]

30 hours every four months! You’re lucky - I’m doing 30 hours twice a week. 😟 My cardiologist says because I can’t tolerate any of the drugs and I can’t wait the excessively(!😡) long time for the NHS to do an ablation and he wants to do a pace and ablate ASAP. 😢

[Karendeena in reply to Dippy22]

Dippy22 that's awful, I thought mine was bad and doesn't it make you feel terrible, like me an episode like that is exhausting and I get really anxious and irritable with it too. I would have thought that an ablation for you would have been a top priority. Why is he suggesting pace and ablate? 😢

[Karendeena in reply to Dippy22]

Which hospital are you under? I take it you are in the UK

[Dippy22]

Yes, I’m in the U.K. - under a failing NHS system. Just had a horrendous two year journey when my back went out in Jan 2021 - five months of fighting with GPs to even get a diagnosis (paid privately in the end) and then 18 months waiting for lumbar spinal fusion surgery. The NHS screwed me over with the back problem and now they’re screwing me over again with the heart issue. Oooh, do I sound angry!! 🤔

Nothing structurally wrong with my heart, in fact even the (private!) cardiologist said it’s “surprisingly good” for someone of my age, but because they can’t try a simple ablation quickly enough (9+ month wait here in Plymouth) he wants to go straight to pace and ablate, i.e. permanently kill off my AV node and put my heart onto a mechanical device for the rest of my life. And I’m only 65! 😢

It’s disgusting.

[dedeottie in reply to Dippy22]

sounds like you could do with a second opinion. I was in a similar position . Because of a rare complication in a previous ablation my EP said he wouldn’t do another so I was actually in the process of having the pace part of P and A when a different EP said he would do another ablation for me. Not sure yet if it’s been a complete success as I have had some AF but at low heart rates but whatever the eventual outcome at least I know that everything was tried before pace and ablate. In England you can opt to have the procedure done in another authority unlike in Wales where I live. Good luck. X

[Dippy22 in reply to dedeottie]

Thanks for the info. Reassuring to know I’m not the only one. I’m speaking to the cardiologist again next Monday and want more info.

[Karendeena in reply to Dippy22]

Hi again, I wouldn't let them do that!! My heart is also structurally sound (well it was last time it was checked). I am under the heart hospital in Glenfield, Leicester and the wait is over a year I believe. The NHS, what's left of it is disgusting. I don't always agree with private practice but I do pay to see my EP every 6 months (I am still working) but I couldn't afford the ablation. I am also 65

[Dippy22 in reply to Karendeena]

Hmmm, I think he was being optimistic when he said 9 months, as everywhere else I saw said 9-12 months. He did also mutter something about “by the time you’ve had cancellations…”. It’s horrendous that it’s our heart health at stake here.

I’ve got a friend whose son is only 40 and his AF has been so bad that his atria has become stretched. She’s given him £10k to get an ablation done privately because she simply can’t wait any longer for the NHS. They’ll kill him.

Funny that you’re exactly the same age as me. What’s happening!!

I’m pretty sure I had covid around Christmas 2019/2020 and the AF started after that - just once or twice a month and nothing really to write home about. Then I definitely caught covid in March 2022 and the AF got markedly worse. Then it was either recommencing swimming again or I caught covid in the pool/leisure centre, cos from October 2022 it just went nuts! I’ve had in average 2-3 episodes a week, lasting anything from 20 to 48 hours.

So far I’ve had six months of trying various drugs (none of which I tolerated, nor did they have any effect!) and NOW it’s too late to wait a further 9 months for an ablation. If I’d been put on the waiting list for it back in October, I’d almost be there by now. They dither about and waste so much time fobbing you off and trying to save themselves money, which in the long run turns out to be a false economy. 🤷‍♀️

Suffice to say I’ve got a functional medicine doctor on it and also a herbalist/nutritionist. It’s costing me an arm and a leg, but we’re throwing everything bar the kitchen sink at it. I’m also battering the GP about my excessively raised ferritin levels, but that’s like pushing a boulder uphill. A common symptom of high ferritin is irregular heartbeat, but he just says he doesn’t know anything about that. 🫤 GPs simply will NOT look at a patient holistically.

[Karendeena in reply to Dippy22]

I am so with you on this one, what is even more strange is that we both succumbed to afib around the same time!!! What is going on?? What does your heart rate go up to when you go into an episode? Mine shoots up to anything between 120 - 170bpm, it's the most awful feeling and along with it comes the anxiety.I was about to start swimming, does that trigger episodes for you,?

Interestingly, my EP tells me that anything that causes inflammation in the body is likely to cause an afib episode so I simply dread getting ill. Does make it real that covid (and the vaccines) could cause it. I was also diagnosed with polymyalgia after my COVID booster, my inflammation levels went through the roof and clearly brought on afib.

My brother had a stroke in January caused by undiagnosed afib, too much of it around 😢

[Dippy22 in reply to Karendeena]

Where to start! From Jan 2020 my af ticked along approx 1-2 times a month…… and then I suddenly started swimming again last October! Hadn’t been since before lockdown in 2020. Within a matter of days of starting doing 20-30 lengths the af went nuts and hasn’t liked back since then.

I think two years of pain and stress and my life going down the pan fighting/waiting to get the spine operation (in addition to dealing with my mother’s increasing dementia) have caused untold mental and physical stress and I’m not at all surprised my heart has got buggered up. Pardon my French.

Mine is about the same rate as your’s - 120/30 - 160/70. Strange eh?!?

Just had a phone call to do the pre-op for the pacemaker (and ablation?) procedure on 27th. I’m still researching it. Apparently it’s more often used for bradycardia and it will NOT stop the af! It just blocks the irregular heart beat going from the top chamber to the bottom chamber.

I have so many questions! Does that mean my heart is still at risk of damage (stretched atria?) in the longterm? Will I still feel rubbish like this 2-3 times a week? 😢

Plus, I’ll have to remain on an anticoagulant for life, as the regular AF will still put me at high risk of a stroke! I don’t suffer from bradycardia, so I’m not seeing much, if any, benefit to having this pace and ablate done. 🤷‍♀️

Cardiologist wrote to say it’s all he can suggest now . I’m compiling a list of questions to ask him when I see him next Monday - another £120! 😟

Oh, and by the way, the woman who phoned to do the pre-op said there’s only ONE doctor in Derriford hospital doing ablations and he’s currently on holiday, so she’s not surprised the wait time is nine+ months. Shocking state of affairs.

And silly me - I got home late and couldn’t be bothered to cook my usual healthy meal, so I had a fish n chip supper and washed it down with some Jaffa cakes. And boom! off went the AF again. 😟That’ll teach me.

[DawnTX in reply to Dippy22]

I missed most of your postings, but if you are having tachycardia etc. ask them about Medtronic azure pm. It may not be right for you, but it might be and it’s worth asking about it because I have one and nothing else would have helped me FYI that with my AV node ablation most certainly does stop a fib. It is six weeks for me now and I am feeling normal with a heart rate of 70. It was first set to 80 changed to 70 last week and eventually will go to 60 if all goes well. That is quite a change from my 150 for over a year plus that was constant not just sometimes and nothing helped not medication’s or ablation or cardioversion. It’s a new pacemaker others would not have helped me. I also have the beginning of heart failure which it could possibly lessen. I will know more next month when I get another echo FYI this was done in the UK it just recently became available in the US where I am. It doesn’t hurt to ask. It is so new here that my doctor just presented it in Dallas and they have requested he teach the procedure to the EPS there so they can help people like me. After my cardioversion failed Christmas week I did not know why I was even still breathing. It seemed like a waste. That is how bad I felt and was.

[Dippy22 in reply to DawnTX]

Thanks. I’ve been watching your posts about the success of your new PM with interest. And thanks for messaging me!

All I know is the cardiologist said it’s the size of a couple of £1 coins stacked one on top of the other and that “he can hide it”. But he did also say it won’t stop the AF. 🤷‍♀️ Not sure how are coins compare with your’s. I’ll certainly ask - I’ve got loads of questions to ask him when I see him again on Monday.

I’m so pleased yours is going well. It must be such a relief.

[DawnTX in reply to Dippy22]

not all doctors even know about the one I have mine is about the size of a half dollar. They are pretty similar in size for this the leads are from what I understand. The unique part of it. My ventricles were not beating in sync besides the tachycardia of constant in the 150s heart rate. I think I told you my doctor has been invited requested to teach the procedure he used on me in Dallas. That shows you that it is still very new. They told him they want to help people like he was able to help me.

now I wonder if what he is telling you is a fib does not get cured. It doesn’t go away as such. But you will not sell it anymore. At least I don’t. The AV node blocks off the natural pacemaker I think I told you and that is where afib is. We still have it, but it no longer plays a part in our heart. The pacemaker will be in charge. That is how we feel better. So if he meant that it won’t go away, he is correct lol listen to me saying the doctor is right who am I? Lol, perhaps it was the way he worded it my flutter did not go away. I have a typical, but it doesn’t bother me. It never really did that I know of. I am hoping he might be doing the procedure. I had oh my goodness you are going to be thrilled. I think. I almost feel normal. How much would you say now it is the time it takes to heal and build stamina. I have no pain I can tell you I’m feeling good already. I think the major thing is building your strength again. If I have a long day or a busy day, just doing errands nothing major, when I get home I am exhausted and need a nap and the next day I am usually still tired. Nothing bad just tired. My doctor told me he can see. I need more rest. I thought I was getting it. Lol.

the tech for the company who made my pm has impressed to me how unique this is FYI if you ever worry about what if it stops working let me explain some time now that I learned Wednesday. There is a backup switch on my p.m. so if they detect, some thing is not right it doesn’t just stop. I meant to ask if it goes automatic or when they detect a problem do they put it on either way I know it’s there now and I’m very happy to know that because I thought if it stops working do I just die? I shoot from the hip I have no doubt many people think this way, but I actually say it lol. We have to be honest about our feelings. It’s part of how we get better.

you can look up my pacemaker online. Medtronic is the company. Azure is the name of the pacemaker. The leads wiring at Cetera is called. HIS pace bundling. If I am understanding correctly, that is the most special part of it all. It was available in the UK before in the US from what I understand, paren there would’ve been nothing for me before this was released. I have the complication of heart failure, although it was just beginning around the time we were making plans for the p.m.

I don’t know why this miracle was sent to me but again I have to tell you how good I am feeling even right now as I am writing to you. Before Christmas when my cardioversion failed after three shocks, I did not see a reason for me to still be here on earth. I may have said that to you before but that’s how horrible I felt and how useless. I saw no sense of me still being here not that I was thinking of anything foolish but if I didn’t wake up that would’ve been fine. Here I am now taking my dog out and yesterday my cat got out and I had to go after it and bend over and pick it up. Before my p.m., none of that could have happened.

Please let us know what you find out and what you are getting done if you can. We are all so different. I didn’t know I was that unique lol weird yes ha ha but on a serious note only your EP can determine what is needed for you because there is so many variables. I have a typical flutter and heart failure.

as far as barely seeing it, I think the incision is maybe an inch or a little larger and he did a beautiful job sewing. I teased him and said I wanted his autograph there. My p.m. does not bulge. I had a friend five years ago get one and she had a horrible bump where the pacemaker was. I can feel my pacemaker. If I touch it you can feel the smoothness, but other than that I don’t think he would know what I am hiding lol. They even have wireless now. I think I told you about the app for mine. About every 2 to 3 months I will have my p.m. checked in person. Eventually, I will only see my EP once a year and my cardiologist will handle everything else unless there is an issue. Next month I get an echo done to check on what’s going on with my heart failure, so my EP can go forward about that if necessary.

This was truly the smartest thing I have ever done for myself, and to think how I did not want to do it. Thank heavens for this site and the people on here. They washed away the fear, and gave me hope and now 😊😊😊😊

[Dippy22 in reply to DawnTX]

Thanks for the extra info and I’m so glad you’re feeling so well. And yes, I expect it will take quite a few months to regain your fitness.

I’m wondering if it’s the same or similar PM. He did m say it’s small.

I’ll ask more questions on Monday - and just hope I don’t annoy him!

I’ll update when I know more. xx

[DawnTX in reply to Dippy22]

Don’t worry about annoying him. It’s your heart and you only have one. They are all about the same size as I said about the size of a half dollar American. Knowledge is power. I would be happy for you. If you get the one like I have, it is state of the art. Even the batteries last longer right now. Mine has 11 years it depends I believe on the usage 😊 lol I sound like I work for the company now. But it is just that I am so happy with how I feel. I never thought I could feel this good again. Even if they told us the name of it, it would mean nothing. Now I know what it is previously told me it was special. He does not talk down to me. He talks to me and explain. That’s what a good doctor does. asking about the one I have.

[Ppiman in reply to Dippy22]

I am guessing he likely feels that the PM will become a necessity at some point in the future anyway? I would ask him to explain his reasoning as it sounds a weird way forwards.

Steve

[2learn]

hi, I was told its up to individual who performs ablation, so if that's correct it will vary from place to place. Don't know if there's any particular guidance for docs or on AFib site.

[MarAF]

I just had my abalation. I was told to stop the Eloquis for 2 doses prior to the procedure. During the procedure they used Heparin as the anticoagulant and the reversed it with the antidote. Then started back on the Eloquis.

[riffjack846]

I had an ablation Dec. 30 2022 and the only thing I stopped for 3 days was my anti arrythmic. Took Eliquis even on the morning of the procedure..

[Woodentopbox]

Hi Karendeena when my wife last visited her consultant he explained that sotalol as a beta blocker slows the heart rate and this medication has only a small effect per tablet. In her case her normal pulse rate was already low i.e in the low 50's and taking regular sotalol did reduce an already low heart rate so logically upping the sotalol dose is likely only to have a small effect in lowering the pulse rate.

[Karendeena in reply to Woodentopbox]

Thank you. Does you wife still take Sotalol?

[Woodentopbox in reply to Karendeena]

Hi - No the consultant said that as her pulse was already low there is no advantage in the beta blocker slowing it even more. So he has after a cardiac MRI prescribed Flecainide 100mg & Metoprolol 25mg tablets. These he described as arrhythmia controls' which he termed 'pill in the pocket' so when she feels that an AF episode is imminent she takes the pills, one of each and so far this has stopped the onset

[Karendeena in reply to Woodentopbox]

Wish I could do that, unfortunately Flecainide caused pro arrythmias in me 🥺

[richphd]

I take 120mg in am and pm I fiind hit very helpful my EP claims he has better ablation outcomes on patients who use sotalol.

[4chickens]

I was originally under glenfield too and before my last ablation, I stopped sotalol 3 days before but continued with my apixaban expect the morning dose on the day of the ablation for which I was first on the list.

[Karendeena in reply to 4chickens]

Have you moved from Glenfield? Who was your consultant?

[4chickens in reply to Karendeena]

I’m not under Glenfield at present, my consultant there was Dr sandilands. I’m now a patient of Mr Hunter at Sheffield

[Karendeena in reply to 4chickens]

Hi again, my consultant Professor Ng works in the same team as Dr Sandilands, they both have the same secretary. I believe that they are two of the top EPs

[Karendeena in reply to 4chickens]

Were you satisfied with Glenfield?

[4chickens]

I found Dr sandilands very personable but he'd done 4 ablations on me and unfortunately none were successful for more than 12 months. When he wanted to do a 5th or pace and ablate, I decided enough was enough so started to explore different options.

[Karendeena in reply to 4chickens]

Thank you. What are you doing now? Are you taking medication or waiting another procedure?

[4chickens in reply to Karendeena]

I’m have a hybrid mini maze at Sheffield unfortunately it’s not available in Leicestershire. For me it felt like my best option to get a better quality of life. Many people have fantastic results at glenfield just think I’m a bit of a conundrum.