Merry Christmas and ablation in the n... - Atrial Fibrillati...

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Merry Christmas and ablation in the new year!

rosie321 profile image
33 Replies

Hi, I just wanted to say that i am very grateful for this association and for being able to talk with other people who are experiencing/have experienced the same things as I am going through. After being diagnosed with AF in June ( I am 52), after my dad had a severe stroke, I have been on bisoprolol. My EP recommended an ablation which i booked and cancelled, through fear, I then went to see him again and I am now on the waiting list for an ablation in the new year. I have been put on rivaroxaban in preperation for the ablation and to say that i am scared is an understatement. I have read many positive posts about ablation, but does anyone regret having it done....I think i am looking for a reason to cancel it!!!!

Thank you in advance and MERRY CHRISTMAS and a HEALTHY NEW YEAR to everyone XX

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rosie321
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BobD profile image
BobDVolunteer

In the 12 years I have been involved with AF I have come across maybe three people who had complications following ablation out of the many hundreds who have passed through our forum. Many have had multiple procedures and a few may still have AF to a greater or lesser degree. Most people tend to come back and say I was right and that it is no big deal.

Do remember that the forum will always be tilted towards the failures as successful ablatees leave our ranks as they no longer need our support. They may come back and tell us they are better but only a very few remain regular contributors.

Stop looking for excuses and look to your (better) future.

Merry Christmas and a Happy new Year,

Bob

rosie321 profile image
rosie321 in reply toBobD

Thank you Bob, it is good to hear that over 12 years only a few people have had complications. Thank you for your support.

Merry Christmas and Happy New Year to you

Hi

I remember your first post as I am in similar place to you. Scared but not entirely closed minded to the procedure. I know entirely what I am scared of. Is it worth pinpointing what you are scared of and working on the fear if you feel it worth working on? I recognise on medication that I'm not entirely better but I recognise the ablation as risky and invasive. Others who have had it have been supportive, but they survived it unscathed and I'm still afraid of the small risk that it may not be a happy outcome. I also do believe in listening to yourself. Work out the gain to yourself of having it v not having it. And that means gain if it works or gain if it doesn't. I think it is entirely understandable for anyone to feel the way you do and I think about what advice would I give if it was a friend in my shoes. I wouldn't diss their fear or try to convince them it would work out for the best - that would be their job to work on their own choice and reasons why. I was told to not overthink the decision right at the beginning. So although I was going to go for it I decided that I wouldn't until I was convinced and confident that I would! And I'm still making up my mind!!! Don't be uncomfortable in your thinking though as it's a do I don't I quandary. If and when you are ready you will elect to have it. That's why it's an elective procedure. I'm not going to have one until I've decided to have it. Others have decided for me I should because they aren't thinking what I'm thinking they just see it as the best decision. In the long run the best decision is the one that takes time to arrive at!! Well at least that's my view. Good luck with your thoughts.

rosie321 profile image
rosie321 in reply to

Hello Julie, thank you for your reply, yes i agree others think it is the best decision for me without having the facts or needing to go through it themselves. My fear is that something may go wrong, a complication, as often in my life, if it could go wrong it will go wrong. That is what is in the back of my mind. On the flipside my heart is out of rhythm every day and I have been told it is progressive and harder to treat as it gets worse. I go round and round in my decision making, depending on how bad or good i feel on that particular day! At the moment it is likely that i will have the ablation, i will keep you posted.

jennydog profile image
jennydog

Don't risk living with regrets. Your EP must be confident that he stands a cracking chance of improving your quality of life. This is a £15,000 procedure and it will take up half of his day so he's not going to offer it for fun, is he?

Don't be afraid. Bob said that dental root canal treatment was worse. I agree with him. Post-ablation I can now face each day knowing that it's not going to be ruined by AF.

rosie321 profile image
rosie321 in reply tojennydog

Thank you Jenny, I do trust my EP and his recommendation, but currently my AF is manageable, although I dont like being on bisoprolol. He has told me that it is progressive and in time will change the structure of my heart, so that it becomes persistant. At present i am heading towards an ablation in the hope that this does not happen.

jennydog profile image
jennydog in reply torosie321

rosie321 Don't hesitate to private message any one of us if you want to discuss anything girly. I do think that ablation would be less scary if the access was other than the groin. The paper knickers were a Godsend!

rosie321 profile image
rosie321 in reply tojennydog

Thank you X

Wodney1966 profile image
Wodney1966

I'm having a icd fitted in Jan n I'm scared lol

Rosie, I do understand what you are going through.

I was very reluctant to agree to an ablation but it was a bout of heart failure...thankfully a one off.....which finally persuaded me plus a further admission for a dc cardioversion.

I've since had 2 more ablation s and very many cardioversion. I still get bouts of persistent AF which require cardioversion . So I'm not cured , if there is such a word. However I'm in a much better place than I was and have no regrets in having my procedures. I have complete confidence in my EP.

You need to be clear in your mind that this is the right step for you, bearing in mind that the vast majority of us were pretty scared at the prospect. You don't want this hanging around at your age. You have a lot of living to do !

Sandra

rosie321 profile image
rosie321 in reply to

Thank you Sandra, you sound like you have had a really tough time. I think part of my hesitation is not feeling that it is "bad" enough. I have days when i have the odd flutter and then days when my heart feels out of rhythm for longer periods of time. Although my EP says that this is a good time to have an ablation so that it doesnt progress and i can live my life free of AF. Wishing you a healthy 2017.

Rellim296 profile image
Rellim296

And all good wishes to you too.

What worries us all is that we might be worse off afterwards. That's really the only thing to be scared about. It's unlikely to be particularly unpleasant, and you might not remember much of it anyway. Hold onto the fact that most things that might go awry will be quickly sorted and either you won't be aware of the problem or perhaps you'd have an extra day or two in hospital. The risk of a something really going wrong is there but it is tiny.

Any procedure has risks and every day lots of people get up and think it's going to be a normal day and it isn't. We all live with this and think nothing of it.

There was a discussion about ablation a few days ago, and interestingly, of the many who responded, those who were enthusiastic about ablation had all had one - or more. The doubters were mostly people who hadn't had one.

Rellim296 profile image
Rellim296 in reply toRellim296

PS - Since writing this, we have been out in the car. We live on a single track lane and met our neighbour heading out as we were returning. We chatted in a passing place for a few moments. Setting off again, round the corner ahead was a fallen branch completely blocking the road. Not a big branch, but big enough to need two people to move it. It could have fallen on either car and we both missed it by a minute or so. I don't think it would have been fatal, but I do feel slightly sobered.

rosie321 profile image
rosie321 in reply toRellim296

Wow, I am glad that no one was hurt and that you are safe. Yes i agree that we all live with risks and things can change in a minute, but some things are out of our control where others are a choice. I feel with ablation that i may be putting myself at risk, but on the other hand there are risks if i do not have it. That is the dilemma.

Rellim296 profile image
Rellim296 in reply torosie321

To an extent, we can trust in our EP's judgement, as jennydog says and certainly AF is easier to treat when it is not too entrenched. It is perhaps less difficult for those of us who are a little older to take risks. I certainly feel I have already had more years than I had hoped for and would not feel short changed if I came to a sudden end. Those with decades ahead of them could feel very differently.

rosie321 profile image
rosie321 in reply toRellim296

Thank you, I will read the discussion from a few days ago.

Well, all I can tell you is that my ablation, done in my mid-50's (13 years ago), worked great.

I was scared too and refused to have it done for 2 years, during whch time I stayed on drugs which were working well but with side-effects. So eventually I agreed to my EP's recommendation to have an ablation done. They did it under sedation and I'm not just saying this, it really was a doddle. Had to take it easy for a week or so afterwards, but no more AF for 8 years. I couldn't feel my heart afterwards for years, it was soooo peaceful. And I came off all drugs except anticogulants which I'm on for life I guess.

My AF came back a little after 8 years, so had another ablation (under GA this time) to nip it in the bud, but they had to abort the procedure because my ticker wouldn't play up. So back on drugs but no side-effects this time. Hope to be offered a 3rd ablation if offered which I'll take up without much though.

Have a good one.

Koll

rosie321 profile image
rosie321 in reply to

Thank you for your reassurance.

Vony profile image
Vony

Hi rosie321...I completely understand your fears about ablation. I have seen many times on this forum that root canal is worse than ablation....Well, I don't know what dentist people go to and I myself have had root canal 4 times but I do NOT think ablation is easier than root canal. But what I do have to offer is that prior to ablation I was so scared I was almost delirious with fear and anxiety. And it was NOTHING to be scared of. It was completely fine. The second I went into the cath lab, I was blown away by how high tech everything was and what expert hands I was in. And I mean I was PETRIFIED. I have certainly never had fear like that going for root canal!!!! plus root canal is short and ablation is looong!!!! (mine was 5 hours or so). The IV sedation (not general anaesthetic) was gorgeous lol and the pain relief was 100% effective. As for the risks...there are risks in EVERYTHING we do....but they are minimal ...even negligible. If you do decide to go for this, try and focus on the amazing positive effect this could have on your quality of life. Your EP would not give it a go if he/she did not think it could help significantly. Mine did not work. I was offered a second ablation but told that my EP study showed complex arrythmias and it would probably not work...so I decided not to try a second time...but I do NOT regret for a second trying it the first time as it helped us learn more about my heart and also helped me know I had at least had the chance to improve. If the fear is too much for you to deal with alone, talk to your EP or even your GP about your feelings. But the actual procedure in my experience was COMPLETELY FINE ...and it was not smooth...(i fainted after getting up, bashed my head offf the corner screw of a radiator and ended up in coronary care for 2 weeks after) but still don't regret it and would still do it again if I had to decide again. Best wishes...I fell your pain in the run up to it but you will be FINE and hopefully/likely have a much better quality of life. Christmas hugs:) keep us posted xxxxxxx

rosie321 profile image
rosie321 in reply toVony

Thank you Vony, I have seen my EP twice with a list of questions....it was like an interview for him, but luckily he was very patient and answered them all. Your procedure does not sound like a hugely positive experience, particularly that you fainted and ended up in coronary care for 2 weeks! I think my indecision is that, at present, my quality of life is not affected that much. The bisoprolol makes me feel tired and i can feel my heart skipping beats, but i can live with that. The worry is that it may get worse and then not be so easy to rectify.

Christmas hugs to you too and yes I will keep you posted. xxx

Buffafly profile image
Buffafly

You are not looking for a reason, you are looking for an excuse! You have already decided for whatever reason to agree with your EP that this is the best thing for you but all the logic, statistics, success stories and encouragement in the world are not going to stop you feeling frightened, I know, I've been there! All I can say is to quote, 'Feel the fear and do it anyway'. Best wishes for a Merry (even if trembly) Christmas!

rosie321 profile image
rosie321 in reply toBuffafly

Thank you, yes a reason or an excuse will do !!! Any good ones I can use???

Jomama profile image
Jomama

I am in the same place as you are. Not so quite as young at 60, but still look good and feel good for my age. My afib started in September and I'm only on a calcium channel blocker to control rate. My afib is getting worse although I think it's pretty mild compared to most. I usually have it at night after a meal and I don't always go into full blown afib. Sometimes it's just flutter or a few misses or hard beats. I don't want to go on antiarrhythmic drugs as my heart rate is pretty slow enough and my EP thinks that it will make me feel pretty bad. I just saw my EP today and have decided on an ablation. I'm scared out of my wits but I don't want to be on medication the rest of my life and I don't want to deal with the anxiety and the discomfort that I get when I go through a fib. I too feel the same exact way that you do. When I'm feeling fine and days go by where I don't have any a fib I feel like maybe it's overkill to get an ablation; to do something so invasive. But then when I get afib it's just awful and I think that I really don't want to deal with this any longer. I just want to get it done and I want to move on with my life. I want to be able to have a cup of caffeinated coffee or a piece of chocolate and not worry that I'll go into afib. I've been told by my doc that it will only get worse and it's better to get it earlier before it gets bad. At this point he feels that the success rate will be greater if we don't wait till we go down the road of antiarrhythmics and years pass by and the heart has been dealing with a fib for years and years. So I am biting the bullet and I have made the decision to do it. Like I said I'm scared out of my wits but I think once it's done I will be much happier. I'm hoping it will be a success of course and I think it will be worth a shot. I'm feeling positive that it will help me. I asked my doc what he would do if he were in my shoes and he said he'd do the ablation. He can tell that I just want to move on with my life without this burden of afib. I know two young women who had it and said it was the best decision they ever made. I'm trying my best to fight the fear and not let it control my decision. Good luck with yours I hope you come to one that works for you. I'm here to commiserate if you need me!!

rosie321 profile image
rosie321 in reply toJomama

Hi Romana, I could have written your post myself, we sound like we are in the same position, not sure if it is overkill to have an ablation and if our AF is bad enough. To add to that I have been vegetarian since age 7 and now, like you, i also cant have caffeine, chocolate or alcohol! I have seen my EP twice and each time his advice has been the same, to catch it while i am young, "fit" and it is not persistent. I am now on anticoagulants in preparation for an ablation at the beginning of 2017 and it seems regardless of what anyone says to me....I am scared. This forum has helped me no end and i am very grateful to have reassurance from those in the same boat. When are you having your ablation?

Jomama profile image
Jomama in reply torosie321

The office will be calling me on Tuesday to schedule for sometime in February. I'm scared yet excited that I've made the decision and hope that it will fix this problem and I can move on. I am on anti-coagulants and the doc said that after six months if I don't have any afib (I will be monitored with this new kind of monitor through my smartphone) that I may be able to stop them. I do hope so...I just want to not be centered around this condition anymore and I want to be free to have the occasion glass of wine with dinner out or a taste of that yummy looking chocolate! Timing is not the best for me as I'm super busy at work starting in February but my health is more important and I want to get this done sooner than later. I could always do some work from home during recovery if I'm up to it. Doc says I'll be in hospital overnight and then I should rest at home for about a week. He said it's not that I won't physically be able to do things but that I will probably be a bit worn out from it (after all its general anesthesia and its about a four hour job) and he said it's a combination of he physical and the mental recovery combined. I really don't care as I think it'll be worth it! It sounds like you are leaning towards an ablation now. Have you scheduled yours yet?

rosie321 profile image
rosie321 in reply toJomama

I have been told it will be after being on anticoagulants for 3 months which will make it around March time. I have been booked for a pre assessment on 3rd January, but have no date for ablation.

Jomama profile image
Jomama in reply torosie321

I've been on anti-coagulants since I've been diagnosed last May, so I'm good to go. I will keep you informed of my situation. I think we are making the right decision! Happy holidays to you!

Jomama profile image
Jomama

Oh I forgot to mention that my main concern is that the procedure might make my afib worse. That is very worrisome for me as it's not so horrible because I don't get it that often and I'd hate to make it worse than it is already. Doc allayed my fears that only a tiny percentage of people who get the ablation develop other or more frequent symptoms of flutter, but that would be fixed with a second procedure. Bit the takeaway was that in most cases the afib is much improved or even "cured" although they don't like to use that term.

BobD profile image
BobDVolunteer

Just a few final thoughts from me before Christmas.

I have said many times that we are only told about the risks involved with ablation so that we or our relatives can't sue the doctors in the unlikely event that anything went wrong. Years ago this would not have been the case and you would probably have agreed to a procedure that your doctor told you would help you.

The unknown is always scary but most people don't not go out in case they get run over by a bus. We rationalise our fears. When I was first offered ablation in 2004 there was little data about results and the risks scared me silly but as expected and predicted my AF got worse and after six months I was begging them to do it. Mine was a long and difficult journey and who could have predicted that two years after my final successful ablation I would find I had cancer. My surgeon agreed that he would have been very reluctant to carry out a four and a half hour operation to remove it had I still been in AF. I firmly believe that I am still here today thanks to my ablation.

None of our futures are guaranteed - -just ask any Christmas shopper in Berlin-- but surely we owe it to ourselves and our families to think positively and strive for a better life by whatever means available to us.

That said and again I have said this many times, the right answer is what is right for you at this time BUT whatever you choose never look back and regret it.

Merry Christmas.

Bob

rosie321 profile image
rosie321 in reply toBobD

Hi Bob, I agree that you never know what is round the corner and hearing about your cancer has made me realise that the best way forward is to treat the AF. I hope that you are now well, I know what a truly awful disease it is. I have 2 dads, my biological father had a severe stroke this year (he didnt know he had AF....luckily i now know I have it) and the dad that bought me up has had cancer for the last 3 years and still fighting the fight. I wish you good health and an ablation it is for me.

Merry Christmas and a very healthy new year.

BobD profile image
BobDVolunteer in reply torosie321

I'm good thanks Rosie. Five years now and blood tests show no sign. To be honest I still worry about AF coming back more than that!

Beta44 profile image
Beta44

Ablation is becoming quite a broad subject. I had cryoablation and it took less than two hours and was a breeze, also entirely successful. Was I unusual, no, so far as I could determine from the staff they are mostly routine and successful. I think that some on this site have complex situations that take hours to fix. I suspect that many of the routine cases never make it to this site and most of those that do disappear after their ablation. I was naturally scared at the time but would have another tomorrow in the unlikely event of needing it.

Peter

rosie321 profile image
rosie321 in reply toBeta44

Thank you Peter, it is really good to hear that.

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