Hi Have just joined and am anxious to find out what other members think of my current dilemma, any advice welcome thank you.

[Chris7]

I have had AF for many years, treated intermittently for years but now take Flecainide on a regular basis. My AF seems to occur cyclically, for months it can be ok and then I get continuous bouts. At the moment it is controlled. I also have a kidney transplant. I was referred to a cardiologist during one of the more active bouts and he in turn referred me to an electrophsiologist to see if a pacemaker might help. This guy suggested an ablation but after much thought and things going wrong in every direction I decided that this was not for me at this time. The surgeon has now suggested that I stop the flecainide as they have no evidence of my AF at this hospital and it does not seem to be available at the hospital where I was originally diagnosed. I have done 24hr ECG in the past with nothing showing...it is paroxysmal so comes and goes randomly.....I think stopping this drug is an irresponsible thing to do JUST to get an ECG showing AF....am I right to be concerned?

[Beancounter]

Hi Chris

Flecainide is a rhythm control drug, and it does seem a little strange to stop the drug solely to confirm a diagnosis, why don't they fit you with a halter monitor for a week and record the ECGs?.

The ablation decision is harder, it really depends on how it effects your lifestyle currently, and what symptoms you are getting, the dilemma is that the earlier the ablation the more chance of success, but of course ablation is a fairly major procedure.

I am presuming you are on warfarin or similar, because of course you should be with AF, and that's the most important drug you can take right now, the risk is stroke, not AF.

And there is a specialist AF forum, which might help

healthunlocked.com/afassoci...

Good luck

Ian

[Chris7 in reply to Beancounter]

Thanks Ian, yes am currently on apaxiban which was specifically for the ablation and am now being told to go back to aspirin, which is fine......thank you for the link much appreciated. The surgeon is not best pleased that I have cancelled the procedure but am concerned that these things should have been sorted before any mention of an ablation and yes a 24 ECG would make more sense. Am going to see my GP to discuss things with her but thank you for your reply xx

[Beancounter]

NO going back to Aspirin is not fine, The real risks from AF are stroke, and aspirin does not prevent AF strokes, which are the major cause of strokes in this country and also the most serious forms of stroke.

Depending on your CHADS2VACS scores (Google it and DO IT) you must stay on some form of anti-coagulant with a diagnosis of A Fib, and not aspirin, if the GP does not believe you, and many don't then ring the AFA and they will give you all the links.

Go to the other forum and talk about your ablation worries as well, I've never had one but many there have and will be able to give first hand advice

Ian

[Chris7]

Thank you bean

counter.....have stayed on the apixiban anyway at the moment, apt booked with GP who is very good, just this particular consultant I am having trouble with! Have already posted on another forum as well so will see what they think...thank you for your reply xxx

[ted21]

I have been taking Flecainide for 4-5 years 100mg twice daily and vary between episodes of AF some times its 12 months other tomes a couple of weeks. It only shows up on the E C Gs at he time and not on the specialists or on the doctors. It seems as if something triggers it off I don't know what it is but is usually precede by passing lots of water. I am very happy with the Flecainide as i used to get AF frequently before I was taking it and I would be very worried about it if taken off it and would seek for advice and get a second independent opinion.

ted21

[Chris7 in reply to ted21]

Hi Ted, thanks so much for your reply, my situation sounds very similar to yours!! I feel well controlled most of the time on the flecainide and haven't had a proper "attack" for some months now, obviously I want to keep it that way!! I am seeing my gp on monday and will certainly get a second opinion if needed, I am not going back to that particular consultant!!

[ted21]

Hi Chris,

good idea going to the GP and a different specialist. I found one good way to get your bouts of AF on a ECG is to call out the Paramedics on 111 or 999 who respond rapidly and give you a ECG at home and also one at the A & E

so that is two E C Gs and blood tests showing up on your record. If you are not kept in for treatment etc keep your copy of the paramedics ECG and show to your GP and specialist ASAP which should bring some response and better your treatment

Good Luck, Ted

[Chris7 in reply to ted21]

aaah thanks Ted, good ideas there....have been to gp who has passed the buck, as I knew they would, onto the renal unit...as everything is settled at the moment I will wait and see them..forgot to ask about the apaxiban though......

[Shelby]

Hi Chris,

I can understand your worry about the ablation procedure because I am currently deciding to have one myself. I do know that you have had other health problems, and I have to consider other problems too.

I actually went in for ablation several years ago but unfortunately they didn't have the technology to locate my condition (I do not have AF but VT). They managed to do a reading of my heart (EPS) but then my local hospital lost the results!

It is a worry and only you know how you feel, if you are concerned about what a medical professional advises then try to get a second opinion. I have discussed ablation with people but ultimately I know it will be my decision.

Shelby

[Chris7 in reply to Shelby]

Hi Shelby, thanks so much for your reply, I feel for you trying to decide what to do, it's never easy is it! How awful that they lost your results after going through the procedure. At the moment my heart is absolutely fine, no AF or anything actually which is really odd, so I am very glad that I decided not to have the procedure...it's been very nice to have the support of people like yourself on here. I am waiting to see the renal people now in April and will discuss it with them. Good Luck, hope it all goes well for you what ever you decide xx