Back in AF after two days

[Cazzab52]

I amsorry if this has all been discussed before, but I am a newbie. I had a stroke in May 2015 due to my heart being in AF. I had a cardioversion last Friday, which did the trick. Sadly my heart went back into AF on Monday I have follow up appointment in six weeks and the hospital say to wait for that, which seems crazy. From what I have read on here seems like an abrasion will probably be next. Are there any other treatments about? Any info or advice gratefully received.

[DavDug]

Steady there Cazzab52,

All is not lost. You have not said how long you have been in AF, at what stage of AF you are and for how long, what drugs you are on and for how long and whether you are on an anti-coagulant?

It would seem strange to wait another 6 weeks but you could drop back into sinus rhythm before this next appointment.

Believe me, I can understand your impatience but one thing that you need with AF is patience. The heart has to settle after the ablation treatment which is very arduous. What you now need is rest. I do physical work, am self employed and have this time allowed at least 3 weeks taking things easy.

It took me 7 years to get onto the Cath. Lab. table in Leeds but I now hope things will move quicker. In my case there was a period between the 1st and 2nd Ablation of 6 months. The first lasted two weeks in sinus rhythm. To say the least I was disappointed. There was a change of drugs, a couple of trips to A and E and the wait for the next appointment.

I remain in sinus rhythm from my second Ablation carried out on the 16th September, just. The Calcium Channel Blocker (Diltiazem) was stopped at that time and I shall be begging for the Beta Blocker to be stopped in a few days time leaving me with the Dabigatran (anticoagulant). Being in sinus rhythm and off the Diltiazem is fantastic!

Keep safe

Dave.

[Hidden in reply to DavDug]

Dave

Cassie has said she had cardioversion not an ablation.

[Hidden]

Hope you are at least on anticoagulant.

[Tobw in reply to Hidden]

I would say this is the most important single thing for someone in your position. Given your history, I can't believe that this is not so, but insist that you be put on an anticoagulant if it hasn't happened yet.

[Hidden]

Hi Cazza, It's hard I know, I've had 2 Ablations and 4 Cardioversions in 18 months, my last Cardioversion was 4 weeks ago and I'm still free from AFIB. It's so disappointing when you pin everything on this one day, this one treatment and then suddenly you're back to square one. One thing I've learnt is patience, patience and more patience. Try to keep calm and try to lead as normal a life as possible within the confines of AFib, again not easy. There is no quick fix to AFib, unfortunately, read all you can, this way you'll have a better understanding of what's happening and why and also you'll be better equipped to deal with it. This forum is one of the best things I ever did, you're not alone, there are many of us and all with a different story to tell. My doctor has started lowering the dose of Atenolol (horrible drug) and hopefully I'll be left with just my anticoagulant, onwards and upwards Cazza!

Stay well

Avril

[Cazzab52 in reply to Hidden]

2 ablation a and 4 cardioversions. You are really patient! Well done you! X

[CDreamer]

Hi Cazz and welcome.

So sorry you had a stroke, were you aware you had AF? If so were you prescribed anticoagulants? Are you on taking them now? This is the most important factor with your history.

Secondly - cardio versions ar seldom long lasting but hey do prove that you can cardio erred so that is really good news. The ablation procedure is one performed by an EP - elctrophysiologist - have you been referred one?

Are you happy with the treatments recommended for you? Have you visited the AFA site and read the literature that is available through downloads? A lot of information and there is a patient day coming up in Birmingham. I learned far more from this forum, the fantastically helpful AFA and the patient day I attended than from any information given by any medics.

I had 2 ablations in Nov2013 & Mar2014 and have been AF free since the 2nd. There are drug treatments which work for some people but only a specialist EP can advise competently - in my opinion.

Ask any questions, this is a very supportive environment and there is always someone around if you want to have a moan or are concerned or just want to know something.

Take care & best wishes CD

[PeterWh in reply to CDreamer]

There are also cases where drug treatments do not work.

[Cazzab52 in reply to CDreamer]

A thanks for your response! I am sure my main problem is that I want everything sorted yesterday and find the waiting list s lengthy and I feel I am watching my life fly past while I am waiting. I am not too educated in the AF field, but am getting there. I need to spend more time doing some research. I just get so very very tired. I am unsure how much of my fatigue is from the stroke and how much is down to the AF. It seems quite a few people have had successful second ablasions. Thanks for your support everyone!

[CDreamer]

Ok my keyboard is not working very well.... Hope you can guess the missing letters........

[Cazzab52 in reply to CDreamer]

Looks like my typing since my stroke!

[Eliza2]

Hope you are recovering from your stroke. Did you know you had afib when you had it? It is a long road of patience, fear and anxiety with this afib. I have little patience and lots of fear. I try to not allow it to consume me....its not easy. Big hug to you.

[Cazzab52 in reply to Eliza2]

Thanks for taking the time to reply. Have added a post.

[Cazzab52]

Thank you all so much for taking the time to read and then respond to my post. This site was recommended to me by a friend with AF, and I am extremely grateful she told me about it. I don't feel quite so alone now and it helps that there are others seemingly happy to give advice, as they are further down this very long road than I am.

In response to your questions, I was put on warfarin and bisoprolol as soon as I had my stroke in May. My inr levels were not improving quick enough so in June they put me on rivaroxaban . Before my stroke I did not know my heart was in AF, but on reflection I had been breathless and suffered from fatigue for some time before. I mentioned this to a number of GPs but they only ever checked my bloods, not my heart, even though it was known I had a heart murmur and a family history of heart disease. So they only found out when I had the stroke! One of you asked what stage of AF I was in, I don't understand this sorry! I was interested to know that my heart could possibly drop back into sinus rhythm before my follow up appointment. I didn't know this could happen. I have never been told to rest but then I have not been told to not rest, what's your advice? I have been on the AFA site and done some reading, but unfortunately since my stroke, I struggle to digest too much information, so perhaps I need to go back and read again and make notes, as I have done in reading your responses. Thanks again everyone, and thank for passing on your experiences!

[PeterWh in reply to Cazzab52]

Get the AFA to send you some of the publications. For many things written on paper is an easier way to take in info and you can also highlight key things (get some highlighters) and make notes.

From what you have said I am guessing that you are in persistent AF. That was the same in my case and I only knew it once formally diagnosed. However I was lucky enough not to have had a stroke. Again easy to understand symptoms with the benefit of hindsight. As reassurance after my cardioversion I laated less than a day in sinus rhythm. The key from a medical point of view is that it shows that you can be returned to sinus rhythm. I had an ablation at the end of March but only lasted less than 72 hours in sinus rhythm. Before deciding on the ablation route I had asked my consultant EP what the chances of success were. He told me first time 0% (zero %) and that it would take two or quite possibly three ablations. I have no regrets having the first and awaiting the second.

[Cazzab52 in reply to PeterWh]

Yes Peter I am in persistent AF. You are lucky to have been diagnosed before having a stroke. At 56 it was the last thing I expected!

[PeterWh in reply to Cazzab52]

Yes - I was only just 60 at the time. Suspect now that I was in persistent AF for at least a year and could have been 3 or 4 years - getting progressively but slowly worse.

[Eliza2]

I have never heard that chances of a successful ablation for the first one was 0%!!!! Many people have written in and none have said this. My EP said 60 to 70% chance. Where it's done and by whom also play a part in the odds. Saying zero percent works is unfounded and reading that upsetting to many.

[PeterWh in reply to Eliza2]

I am lucky in that my work background and experience means that I have a very acute knowledge and preciseness regarding the use of English and so I asked exactly the right question and also it is possible that he felt that he could be 100% open with me whereas with others he wouldn't be!! However whilst my consultant is one who is quite prepared to be open, I know of / have heard of consultants who are not willing to be 100% open. I wanted to get to the true point - me and my case and my EP was very helpful and obliged!!! I feel that even though this posting is long winded it is very worthwhile reading (carefully).

Also I am good at collecting knowledge and information. I will write two scenarios and hope that you pick up the real subtleties.

I was and am in persistent AF. I had had a DCCV and reverted to AF within 24 hours. Consultant told me the only realistic option is an ablation - drugs won't work.

I ask my EP "what are the chances of success for an ablation". The EP then goes on to give the statistics about ablation success first time. However this will probably (almost 100% certainly) be based on generalities and "national" and "study" statistics (because I have asked a GENERAL question). These results may have combined the statistics for those in paroxysmal AF and those in persistent AF. I can't remember the exact number but I believe that the success rate first time for Paroxysmal AF is four or so times higher than for persistent AF.

I say to my EP (and this is approximately what I did say) "I have read up on AF on the AFA website as recommended by you and other studies (and read presentations from key consultants including your hospitals) and I want you to be 100% open and honest with me. What are the chances of success in MY (ie personal not general) case for ablation first time round and subsequent times [especially as I am already in persistent AF] and for how long would I stay in sinus rhythm.

That is a very specific question specifically directed at my case. This is when he said no chance of success in YOUR (ie my) CASE first time. He said that he could not predict how long I would stay in sinus rhythm for but maximum was weeks. His HOPE (or liked to think - I am not sure exactly what he said) was that I would last 6 weeks so that he could see the effect of not being in AF had on my leaking heart valves (moderate to severe leakage in the tricuspid valve and minor leakage in mitral valve) - 6 weeks was the minimum stabilisation time. He arranged for my ablation follow up appointment to be at 6 weeks rather than the normal 3 months (so you can see he didn't expect it to last in MY CASE)!!!. However I lasted less than 72 hours in sinus rhythm before reverting to persistent AF (and where I remain 6 months later). All verified on my AliveCor.

I certainly hope that no one is discouraged by my case or statements - quite the opposite. I have stated it a few times to give encouragement to people either to have the ablation in the first place or ones who have had an ablation and reverted to AF (someone on here reverted to AF only two days later so beat my less than 72 hours!!!).

Even if you know it is going to fail the first time if you don't start with the first one there is NEVER any chance of success in the long term!!!

It is like getting into a car. Statistically every driver will have a number of accidents in their lifetime (I cannot recall the exact number and don't have the inclination to find out!!). However if you sit in your car in your drive you will never have an accident - however you will never get anywhere either!!!

Hope that this helps.

[PeterWh in reply to PeterWh]

I missed making a few points. I have severe persistent AF.

I am under one of the leading hospitals and a very good senior EP consultant and I very much respect him. I was in the cath lab for 6.5 hours for my ablation so you can see that I was not one of the shorties!!! I was awake for part of the procedure and when he came to do one of the veins his comment was "gosh this one is a hive of activity!!! I am not worried that I reverted to AF less than 72 hours later. For ME I was happier knowing in advance that there was no chance of success rather than being told 70% and then failing (which it still would have). Also as I had read up on things as soon as he had said that he would see me in 6 weeks I would have twigged that something was amiss in MY CASE because I had read up about 3 months being the normal follow up time!!! I would then have asked why.

If you are in paroxysmal AF the chances of success are higher on all times. The longer someone has been in persistent AF the chances of success first and subsequent times are lower. It is suspected that I have been in persistent AF for a number of years but not overly symptomatic but gradually deteriorating but keeping going!!! With hindsight I can see the symptoms and identify a couple of the step changes but that is to no avail now. Most of the typical causes did not apply (I was not really over weight, drank a little but under NHS guidelines, no salt, no sugar, ate fruit, etc). The only one was really adrenaline and in any event I could have been one of those who had a predisposition for AF.

[PeterWh in reply to PeterWh]

Also in some aspects my situation is better now even though I went back into AF so quickly than before the ablation (eg I don't suffer any where near as much from diarrhoea as I did before, etc).

[CDreamer in reply to PeterWh]

Thank you for your clarification. I do think it easy for people to misread or misunderstand. I agree with you regarding the use of precise language and questioning - i learned early on that you need to know the questions to ask in order to get the information that applies to you.

I find that often people who are anxious, upset or emotional often easily misunderstand or distort what is said to fit their own internal response - I know I can! AF does seem to engender a high anxiety factor.

Just to be absolutely clear - if I might summarize -

If I understood you correctly you are speaking from hindsight - you are saying your particular set of circumstances because of long term persistent AF with leaking valves, meant that you were aware that there was zero chances of a successful ablation of the AF at the first ablation.

That your EP was up front about this with you and that you knew that other statistics quoted elsewhere were general population stats and gathered from those with paroximal AF with no additional factors.

that you would (did) take the hope of the ablation, rather than not, and glad you did because although you still have persistent AF you are not quite as symptomatic.

[Cazzab52]

A rife update: my husband spoke to my EP's PA and he has put me on the waiting lists for another cardio version and a cardio ablation. Hopefully get the dates next week. Fingers crossed!

[Cazzab52]

*brief update! Sorry!