Follow to my aborted ablation

[dedeottie]

Today I had the follow up meeting with my E.P.

You may remember that he had to stop the procedure as he felt he had pierced the aorta and today we were meeting to discuss the way forward. My husband and son are very relieved to hear that he is not offering a repeat ablation . He wants me to stay on my current dose of flecanide (300mg a day ) which is currently keeping the A.F. well controlled. If it stops working, then it will be time to consider other options. However

he says he has patients who have been on flecanide successfully for decades!

He has scheduled me in for a stress exercise test and then one every 2 years to check that I havent developed any heart disease which would mean I would have to stop taking it.

I asked what other options there would be and he said he was hopeful that by that time there would be new drugs to try but failing that it would be time to go down the pacemaker route.

So, there it is. I guess I knew that was going to be the likely outcome but still I cant help feeling a bit deflated as I am back where I started. Still on the flecanide with all the bearable but irritating side effects.

Possitives are:

He is leaving me on the apixaban .....watch out spinach and cranberries .

I will have a regular check on heart disease

I can forget the word ablation, no more sitting on ablation waiting lists, and move on with the rest of my life.

My husband and son are happy that they dont have to worry about me.

I am sad that this has affected them so badly especially as they have both had a couple of episodes of A.F. and my experiences may influence their future decisions. X

[Finvola]

Thank you for the update on what must have been a difficult few weeks and well done for seeing so many positive aspects and planning a way forward. Your EP sounds like a sensible professional who has obviously thought through your course of treatment. A good physician to have on your side.

I have latched on to the idea of Flec for decades, which is my hope too. I know what you mean about your family being happier - mine shy away from the thought of ablation.

Very best wishes for the future - you have one fewer unknown quantity to worry about. xx

[jennydog]

Finvola's post says it all.

The flecainide information is very welcome for me.

Very best wishes.

[CDreamer]

Thanks for the update, I was wondering how you were feeling about that news? I can understand how your family feel but they don't have to experience AF and the drug's side effects. It is good they will continue to monitor you.

If it had been me, I would have been disappointed, more than a bit angry with the EP and feeling as though someone had just moved the sweetie jar out of my reach! But we are all different, I do hope if you have any of these feelings you are able to express and process them.

I guess I would have accepted and adjusted to it in time. I am sorry this isn't for you and do hope that Flecainide continues to work for you. As you say at least you can put that aside now and get on with other things.

Best wishes CD

[dedeottie]

Good morning CDreamer. Yes you are right I do have all of those feelings especially at this time of the day when I am usually the only one awake! If the E.P. had shown any inclination to want to attempt it again I think I would have been tempted to go for it but as he thinks it is my aortic conformation coupled with scar tissue, that is the problem, I wouldnt want to risk it anyway but I do feel the cookie jar has been moved!

Luckily, we do rant openly about things in our family so my frustration has not been kept under wraps .....a few pans have been thrown in the process.

However, I am glad to put all the waiting and uncertainty behind me and to mentally move on.

You are very perceptive CDreamer x

[cbsrbpm in reply to dedeottie]

Good to hear from you, I was going to private message you to see how you were getting on. I think we all like to look on ablation as a cure when that is not always the case unfortunately. With some it has been very successful with others not so. I am glad you have a sensible EP not one of those with a gung Ho attitude who thinks one size fits all. I was on Flecainide for 13 years with no noticeable side effects and would have been happy to stay on it if it hadn't stopped working for me when I went into persistent AF. Keep that positive attitude and remember cookies sometimes don't taste as good as they look 😏

Brenda x

[Tessybear]

It is good that you now know. I really believe that knowledge and acceptance is key. It has been a difficult journey for you and your family. Hopefully now you can relax and get on with your life. I wish you well.

[dedeottie]

Thank you Tessybear x

[ruskin10 in reply to dedeottie]

Good morning, I am just at the beginning of my Flecainide journey, getting used to the side effects and the thought of the nasty chemicals in my body, but encouraged that your AF is under control. Hope I feel the same in the months to come. Best wishes.

[paulalex1313]

I have had three ablutions since 2006 and am still taking Flecainide. The ablations helped a bit, each one ablating a different area of the heart, but as my consultant said, to his student nurse specialist who sat in on my consultation - " Ablation does not always solve the problems, but in this case, it seems that a combination of the ablations and continuing Flecainide is working, so let's leave it like that, rather than do a fourth ablation."

Since then my consultant was been promoted and no longer holds a clinic at my local speciality heart hospital and I am now seeing a colleague of his for my regular 6 monthly checks. In the past 9 months or so I started having ectopic episodes, some of which felt like bad AF attacks, when the missing heart beats were every 3 to 10 beats. Other times, when the ectopics were more spaced apart, I was unaware of them, bar feeling my pulse. My new consultant explained how a fourth ablation would work and which areas in my heart would need to be ablated to, hopefully, deal with the problem, but he suggested we try a change to my medication first, for which I was grateful. I really did not relish a fourth ablation procedure. He put my Flecainide up to 100mg twice a day, from 50mg twice a day and mostly this seems to control things. Fortunately I don't seem to have any noticeable side effects from the drug. If I do have an AF attack, which I have only experienced once in the past year, or a bad ectopic episode, which has happened several times, then I should take a further 100mg Flecainide and 25mg Motoprolol, to keep my heart from racing. This again seems to do the trick although, fortunately, I have had to take this so few times, it is difficult to judge.

So, after all that, I have concluded that to remain on Flecainide and Warfarin for ever, both of which I seem to tolerate well, is a small price to pay for keeping my AF under control and I hope you see it is the same light in your own case.

Keep taking the meds and get on with enjoying life.

[dedeottie in reply to paulalex1313]

Thank you. Actually my E.P. thinks that although the first ablation wasnt totally successful it probably has done some good which will mean that the flecanide should work for longer than it otherwise would. The second ablation was was going to to be to fill in any gaps. I am glad I tried the ablation route if only that it satisfied my need to be doing something positive about A.F. and now I have exhausted that avenue I can channel my energy into moving on.

I hope all continues to go well for you as well. X

[davythom]

Hope the Flecainide works for you if not you can always get a second opinion just to put your mind at rest. I have found EPs differ in their treatments

[dmac4646]

the attached study on Flecanaide may provide you with further reassurance regarding the longer term - it was published in 2011 and I am not aware of any contradictory studies.ncbi.nlm.nih.gov/pmc/articl...

[dedeottie in reply to dmac4646]

Thank you. I have just read the study. It is very clear and reassuring. X

[mincde in reply to dmac4646]

Reassuring indeed, although with one caveat: the review was funded by Meda Pharmaceuticals, which makes flecainide!

[Annaelizabeth]

I think we all try the best we can to make this AF something that we can cope with in our everyday lives. I think there are many for whom ablation is not the answer as there are many for whom it is. But you have the Flecanaide and warfarin, non of which would have been available 40 years ago, so the glass is half full - and you have this lovely site!!

[checkmypulse]

It's been a difficult time for you and yours. Now you have a plan and a goal to aim for lets all hope for steady progress. Keep us up to date.

[Rellim296]

Well, I don't feel you are really back where you started, dedeottie. You know now the ablation route is not open to you (and another one might not have enabled you to be significantly better off anyway) but - importantly - you have the satisfaction of having given it a go (or two). It's encouraging that the first one could well have had some benefits. As you say, there are a lot of positives to count up and a range of options ahead, all of which may be subject to improvement as time goes on. In the meantime, enjoy those cranberries.

[dedeottie]

You are right Relim. Each day I feel more positive and I have to admit I am enjoying the dietry freedom much more than expected. I definitely needed to give the ablation thing a go and now I have , I am satisfied that I could do more and so can move on with no regrets.

Did you have a good break? Good to have ypu back in the fold. X

[Rellim296 in reply to dedeottie]

Oops I missed this! I don't feel I'm moving forwards since coming home. But no trouble from AF and we had a great time and wonderful weather.

[SuziElley]

Bless you, I hope you feel better and can take all this on board. I wonder what side effects you're experiencing from the flecainide? I've just been put on it with probably longterm useI'm sure your family must be relieved and now you can certainly go back to living your life.