AF Association
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Constant AF and not good ablation candidate

I'm new here. I am a 62-year-old female and new to my diagnosis of AF and heart failure which was devastating when I first heard those words -- now I am trying to learn how to live and maintain. I’ve read many posts of people who are worried about AF episodes, yet I am in AF all the time. I have no symptoms to date (my drs. are always asking me about shortness of breath, dizziness, etc., but I have none of that and never have. I was diagnosed inadvertently when I went to my dr. for an appt. and my heart was 130). I've had a failed cardioversion last month and now I've been told I'm not a good candidate for an ablation which really upset me – I was told by EP that I have severe myocardiopathy. I'd like to hear from others who have been told they are not good ablation candidates. I really feel fine which is the weird part but I do know I’m in constant AF. I wonder if there are others like me. I'm on Pradaxa, Bisopropol (10 mg), and Lisinopril (5 but upping to 7.5). I need to lose weight as I am 35 BMI.

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Hi mbheart

Welcome. Loads of info top right and a wealth of experience from members.

Has your EP ruled out any sort of intervention other than ablation? Mine said I might need a so-called pace and ablate strategy if my 3rd ablation did not help. I believe that is designed to reduce the ventricular response to AF.

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I had a phone consultation with an EP last week and here's what she wrote:

"1. Due to severe cardiomyopathy and severe left atrial size, the efficacy of the ablation would be extremely low. Hence, I wouldn't recommend it for you.

2. Discuss with your dr. about starting you on medication called amiodarone and repeat cardioversion.

3. If your cardiomyopathy is due to AF with rapid heart rate, if you could get back into normal rhythm, your heart function could improve."

She wrote this but actually on the phone, she told me that if I took amiodarone for a few months, we could revisit the ablation procedure option. But she didn't write that. So I'm very upset -- does this mean my heart is just going to deteriorate? I don't have faith that a cardioversion will work. And I've heard bad things about amiodarone. Any thoughts? And why do I not have any symptoms? (Yes, I can tell I have a flutter, but no swelling, no breathlessness, etc. Thanks.

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It never hurts to get a second opinion ever and are you sure the rapid heart beat is not because of the myopathy??

I have left ventricular hypertrophy and when i was ablated they left that area alone although there were a few morphosis coming from that region..

There is also some areas of the heart that cannot be ablated i am no doctor and your case sounds awful anyway good luck with it all...

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I need to talk to my cardiologist as this is all new to me. Thx

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Amiodarone increases the likelihood that a cardioversion will work and if it does it shows that you can be in NSR and that means an ablation may be successful and a successful ablation may result in an improvement in your cardiomyopathy. I think that is the line of reasoning.

I have no idea why you don't have symptoms except you may have been very fit!

It seems it is up to you whether you choose to try the suggestions or not, hopefully a discussion with your GP will help.

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Hello Buffaly, Perfect - your response actually reaffirms what I thought. I definitely was not fit so that is why it is weird to me. But hey, so glad I have not had symptoms - if I had though, I'm sure I would have had this diagnosed sooner. But yes, I will be talking to my cardiologist soon.

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The doctor didn't tell you that you could have had your heart accidentally perforated during the procedure. A large atria means that it is dilated and the walls are very thin, very vulnerable to the ablation catheter.

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My EP told me that a cardioversion would not work because of the enlarged size of my right atrium but if I had an ablation it should reduce the atrium size and allow me to have a cardioversion. The next time he said that as I am basically asymptomatic with my permanent AF the dangers of the ablation were best avoided and asked why did I want to be in NSR anyway????

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Under the circumstances, being on permanent asymtomatic AF is practically better than to risk a serious complication from an ablation. Your EP was right in telling you that stopping the AF, would help to slow down the process that is enlarging the atria, but it won’t make the atria normal again. Frequently we have to settle with the second best medical solution. We all wish to be young again and have perfect health, but we have to accept the fact that our bodies deteriorate normally with age, and if we want to live long, we have to accept our lesser than perfect bodies.

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My situation is similar though no cardiomyopathy but I do have a very dilated left atrium and ejection fraction of 40-45%. I began coreg to control my heart rate which is working and amiodarone in October. He says my heart should improve if I can keep the heart rate controlled. Until we get my ejection fraction back up I cannot have an ablation. I've had 3 since 2010.

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Hi!

Your situation is not so bad as it may seem at first look. Being without symptoms means that your heart, even being in AF all the time, still supplies your body with enough oxygen and sugar. If you want to improve your condition further, the best and "easiest" thing to do is to reduce your weight. Do it at any cost, and you do not need an ablation. With permanent AF, you can live up to 100 years...

Hugs!

Baraba

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Thanks Baraba. Definitely weight loss is my goal and more brisk walking. I do believe that will help me, and my primary cardiologist believes over time I will improve. I was disappointed in not being a candidate for ablation but I do understand the reasoning. And for sure, weight loss is my current goal. Hugs to you too.

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Me too!good luck,its one thing I should be able to influence!

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An ablation is not a guaranteed cure anyway. When you face a less than a happy situation, is better not to think about what you are missing, but recognize all the worst situations that have avoided you, and be thankful.

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mbheart

Following your second post, I feel that you have a complex situation which is outside the scope of this forum. None of us here know the overall picture and we are not qualified to give specific advice.

Use the site here as a resource for information, experiential opinion and support, but in my opinion, this is currently a time for you, your GP and your EP to be working closely together. I would not suggest a second opininion at this early stage, until things are very much clearer in your mind.

When we are upset and anxious, and we all are at the start, it can be a mistake to clutch at straws kindly proffered through the ether.

You have plenty of time to make a considered judgement once you have all the facts, given that you are asymptomatic. Assuming you are in the UK. I would start with your GP. If you like her and trust her, book a double appointment. If not, look for a GP you can work with.

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Hello Badger, I've gotten lots of helpful responses which is what I was hoping. This site will be so helpful. Oh, and guess what? I live in California (but don't blame me for you-know-who :-)

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Can you easily make a double appointment with your GP? I asked the receptionist if I could have an extended appointment and she said that you need to ask the doctor for that. Make an appointment to make an appointment:-)

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We’ve all got different issues and problems and I can’t offer advice but have huge empathy with you and I hope my story offers some reassurance. 18 months ago I had a stroke, the consequences have fortunately been inconvenient rather than life changing.

It turned out I had asymptotic AF (plus other asymptotic issues). The biggest and most worrying shock was the consultant telling me on the day of discharge that I had heart failure with an ejection fraction of 25 (should be 55/60). I recovered and my ejection fraction is back to normal. I lost much needed weight and got rid of the asymptotic T2 diabetes I didn’t know I had.

Be well and ask and read away xx

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Hello NickiC - this is great news and gives me hope. I I have 30ef and need to lose about 40 lbs. I know you lost weight but how else did you get your ef back to normal?

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Do you swim? That is a good weight loss exercise.

weightlossresources.co.uk/l...

My wife is 82 and swims (slowly) a 100 lengths three times a week.

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Hello, mbheart. Sorry, been off grid a couple of days coz of blasted work.

I was overweight and with a high BMI as well as the other above health issues I didn’t know I had. But always a walker and a swimmer. Walked up the highest Clwydian hill on the Wed, had the stroke on the Sat.

For about three months I cut out fats and carbs, eating lean protein, veg, berries, yoghurt, porridge. I stopped swimming but only because of the residual arm and hand disability post stroke but upped my walking.

Weight dropped off and the diabetes went away. The cardiologist told me to walk gently and steadily and this would help. But I was already doing that. My EF recovered in about three months and I’m sure it was the PAF being rate controlled, the change in diet and walking.

Now, I have more of a low carb and sugar diet and do eat fats. I don’t rule anything out. I am lucky (and very happy!) that food, caffeine and alcohol are not triggers for me but stress is.

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Thanks. I’ve lost about 15 lbs and have about 30 to go. I try to walk regularly and I’ve laid off carbs and sugar on most days. I notice that lack of sleep is bad for me. Still working on it. My heart rate is fine but I’m in constant afib but it never goes up much. I think this will be life time. I’ll see doc in 2 months. So my BNP test results were 155. Anyone else do that test?

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Hi there - I have permanent AF diagnosed in Jan 2014 (was not permanent then) and heart failure as well. I have been on medication all this time but this is now starting to fail and I cannot take the increased doses of two of the meds which may help because of side effects with increasing the doses. I have asked my Cardio and my GP to refer me to a EP over the last few years but was refused.

So a few months ago I went to a EP privately just to see what was what. I am not completely asymtomatic I would say half and half. I have never been cardioverted , never offerred. My EP told me that ablation would not be an option but pace and ablate would be.

With this you are fitted with a pacemaker and some weeks later you have a AV node ablation. The AV node is the hearts natural heartbeat this would be destroyed (I believe leave 30% of it so if anything went wrong with the pacemaker your heart would carry on long enough for you to get medical help). Once this is done the pacemaker becomes your heartbeat. So instead of having a very irregular heart rate jumping around from 80 to 120 most of the time (and freqently higher I would have a nice steady heart rate which would help my heart recover it would be under less strain and help the heart failure as well. It will not cure the AF it will still be in the background but hopefully not trouble me. He hopes I would be able to come off all my meds except for the NOAC. He did comment that he felt that the meds were adding to me feeling unwell. That I should have more energy and a better quality of life.

I am still awaiting results of a recent echo and a 7 day ECG monitor before we talk again. It is the final option for AF but there are many on here who have had this and are very happy with it. I am still mulling over this and I think it is probably the best way for me to go (I am 71 so hopefully a few years left in me yet). When told you have heart failure it does sound as if you are about shuffle off but I was allocated a wonderful HF practitioner and she has made a lot of difference to me, she is also well versed in AF and always been there to talk to and guide me.

Sorry for long post but I think you need to more things clarified with you medics and go from there. Good luck

Cassie

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forgot to say loosing weight will also have a good inpact as well and even gentle excercise.

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Hello Cassie, thank you for sharing. It is a shame you had to go to a private EP, but it sounds like you have a good plan. I am definitely new to this so I have to look up some terms, such as NOAC, but yes, I'm on one of those. I really like my cardiologist (I didn't like the first one and was able to switch). He takes time with me and explains things. But I haven't talked to him since the EP denied me an ablation. (Something that annoyed me was never meeting the EP but only being diagnosed by phone - and not really giving me much hope.) But again, I'll talk to my cardiologist (BTW, I don't think my GP knows much about this but I hear a lot of people talking about talking to GP.) I wish you the best and many, many more good years!! Keep me informed. Meanwhile, I walked for 1-1/2 hours today, and ate well, and plan to lose weight. Not easy but is necessary. I need to make some lifestyle changes in 2018.

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Hi, this is mainly a British forum and you don't get to see a cardiologist without your GPs say so unless you pay, then the Cardiologist refers you to an EP. Our GPs don't usually know much about AF either! Also I get the impression the EP s are mostly interested in the technology and leave talking to the Cardiologist, only my experience of course 😀

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Yes, same here -- my GP did refer me to my cardiologist, and in turn, the cardiologist referred me to the EP, so I think that is similar. And interesting perspective on technology. Thanks.

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mbheart, you say, "(Something that annoyed me was never meeting the EP but only being diagnosed by phone - and not really giving me much hope.)" A PhD in Communications would fail this EP in communication since it appears that he is using second generation material to diagnose you or incomplete material and since he conveys the cup half empty rather than half full. Do see another EP if you can. Even if a second EP were to give you the same results, hopefully he would treat you in a more professional manner. This EP sounds full of herself.

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I agree -- that's exactly how I felt (and feel). I appreciate your comments and will be following up for a second opinion.

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Hello,

My husband is in permanent afib. Just found out in November of this year. His ejection fraction was at 20% but he is not at 30%. He has been cardioverted 2 times and ablated once a week ago but is still in afib. Dr. said he will just live this way. He is 52 and feels fine. He will have a pacemaker defibrilator surgery later this month and hopefully his heart function will continue to improve. He goes to cardio rehab and has lost 20 pounds. We follow a low sodium diet as well. He is on entresto, metopropol, eliquis, and a baby aspirin.

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I was told that I wasn’t a candidate for ablation, because I was too old (almost 85) and because seven years ago I had the Cox Maze procedure that has left my left atria full of scars. Instead I was prescribed Dofetilide, an anti-arrhythmic drug that keeps my AF under some control. I don’t feel handicapped by my AF and carry a regular life. You are very fortunate in that your AF is not highly symptomatic. As long as you take Pradaxa, you are reasonably protected from suffering a stroke. You doctor might decide to put you in one of the antiarrhythmic drugs that are similar to Dofetilide..

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Couldn’t agree more. I’m rate controlled and thus far stable and have no need or desire to have meds with potentially nasty side effects or invasive procedures.

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Good to hear, tachp. I'll see what he says. Good luck to you!

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As i understand thibgs...an Ablation is to simply improve your quality of life. If you are sympton and issue free being in persistant AF why bother with an Ablation and all the risks associated with the procedure. I have had AF since 2009 and persistant AF since April 2016. My EP was willing to try an Ablation but advised and stated " why take the risk" i took his advise and up to now i don't regret my decision.

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Thanks - that makes sense and I'm starting to understand this more.

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Hello roy

My husband is 52 and is in persistent afib. He was ablated but it did not work. The EP says his ejection fraction is at 20%. How is your ejection fraction after being in afib for so long? Medications are working to keep his heart rate at 60. He feels fine.

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Hi tuttie my EF According to my EP is very acceptable whatever that means lol. To be honest i am at a stage in my AF journey where i accept I have AF and simply get on with life. I no longer chase the HOLY GRAIL that is NSR. My lifestyle is not compromised and there are much worse conditions that could effect me. I do take an anticoagulant and 1.25g Bisoporol twice daily. I hope your hubby enjoys life and doesn't allow this condition we call AF define him. Cheers Roy

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You may find this website of interest re ways you can help yourself: drjohnday.com/cure-afib/

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