AF sufferer

[Adyjc13]

Hi everyone,

Not posted for quite some time now but do read the posts and replies.

I was diagnosed with permanent AF at 46, I'm 50 next. I only got to see a cardiologist about two months ago after been cardio verted two years ago, I jumped out again last September.

I don't get any symptoms apart from the mental effect which is the big battle.

Anyway, after seeing the cardiologist he has said that they are going to take no further action and leave me in AF and to live with it.

Not too happy about this if im honest

When I asked why, he said that if they cardio verted me I would, just most likely jump out again, and because my quality of life (I swim and walk the dogs with no adverse effects) is good he didn't want to do an ablation as it wouldn't improve my quality of life that much??????

I take 3.5 bisoporol and no anticoagulants.

I would like to know people's thoughts on this and from anybody in a similar situation.

Hope the above made sense.

Thanks for reading

Adrian.

[CDreamer]

Hi Adrian - From my understanding, all treatment for AF is for QOL - quality of life - not to 'save' lives therefore I think many doctors make a judgement based on your QOL - which probably sounds good to them in comparison to other people who are more symptomatic.

Add in the very real financial restraints happening currently in the NHS and they obviously think you are not a priority for treatment in other words - sounds like a fobb off to me.

You say you were treated by a cardiologist? Was that person a specialist EP who performed successful ablations? as I was told I wouldn't be a candidate and that it was 'a very invasive procedure with quite high risks of damaging the heart' which of course is true but the statistical chances of that happening against the chances of success were stacked in favor of ablation - I found out later he doesn't really 'do' ablations and there were no facilities at the hospital to perform them. Luckily I had a very supportive GP who got quite angry on my behalf and supported me to find an EP who would offer ablation as he felt very strongly inward a good candidate, thankfully he was correct.

Can you go ask for a second opinion from an (or another) EP as from my understanding, if you have had one successful cardioversions then you have a possibility that an ablation would be helpful.

You are young to have to live with AF for the rest of your life. Would it be worth seeing an EP privately for a second opinion consultation? Cost circa £100-250. What I found was the story sometimes changes when you see consultant privately - shouldn't be of course but we have to live in the 'real' world, not an idealized one.

I wouldn't be happy with this decision either. I wasted far too many years with AF before I had ablation and I was very symptomatic. However I had to go privately, luckily I had health insurance from my company, to have one and from what I understand now, NHS availability is becoming more restricted.

Good luck and let us know how you get on. CD

Ps why not ring the AFA and ask their opinion on what action you might take next?

[Adyjc13 in reply to CDreamer]

Thanks for replying

I seem to have this feeling at the back of my mind that it's all about cost.

When I was sat with the consultant it was on the tip of my tongue to ask him what he would do if in my position, rolls reversed. But I didn't, I think I would have got the politicians answer!!!!!!

My first cardio version lasted 18 months, I thought they might do another, I was wrong. Been told it is pointless is not an answer really

I have a friend that had a second cv and he has been in rhythm nearly five years.

I will make the call and will probably pay to see a consultant, that was on my list to do.

Thanks again.

[reedman in reply to CDreamer]

Hi Adrian, I've been in the same boat for about 5 years now. Once I had mentally adjusted to the fact of my condition I have learnt to live with it. 2 unsuccesful electrocardioversions (only 2/3 days of NSR) and the reverted to AF. Medical opinion ablation not likely to be particuarly advantageous since QOL is pretty good. Like you I am asymtomatic. I'm 74 shortly, I still work running a small electrical business, I have just completed (well almost) a small extension to our house and I run and play in a jazz band. I found that the bisoprolol made me extremely lethargic and with GP approval I have dropped that. But and it is a BIG BUT I really think you ought to talk to your GP about anticoagulation for stroke prevention and therefore peace of mind. My experience is that, apart from a daily dose of Warfarin, the fact that my ticker has decided to beat irregularly leaves me unaffected by my persistent/permanent AF. Incidentally, I also lost a bit of weight which probably helps a little. I hope that you might find my experience helpful.

[BobD Volunteer]

I totally agree with everything CDreamer has suggested Adrian. That said, one of the foremost EPs in UK, Prof Richard Schilling recently clearly stated in a lecture that any treatment for AF was for improved quality of life once stroke risk had been addresses. There is no current evidence that ablation improves life expectancy as in any case we know that AF is not life threatening.

Provided that your heart rate is well controlled when in AF and that you have no other health issues your case will most likely be judged on QOL. I agree that a second opinion may well be worthwhile , however, as from my understanding your AF is NOT permanent but persistent since you were able to be cardioverted so ablation may possibly be an option . Whether our national health service would provide that in your case or if a private procedure would be required is the big question.

[PeterWh]

Adrian. I agree with CD Dreamer.

I would definitely check out whether or not the cardiologist you saw is an EP or not. Look at his CV and also list of heart rythym specialists on AFA website and filter by ablations category. If he isn't then use same list to find our EPs and look at their CVs. Be prepared to travel. FYI over 40% of the ablations are done in London. Personally if you can afford it I would strongly advise you to go privately because you will get a longer appointment. I would definitely go and see one of the top people.

Just because you are ok now does not mean that it will stay that way. Prior to Sep 14 I was in persistent AF without realising it because only very mildly symptomatic and those I put down to other things. Had a minor eye operation under general anaesthetic and AF was identified whilst I was under and GA made things worse. Had one ablation Mar 15 which provided a number of improvements even though I went back into persistent AF less than 72 hours later (as predicted though EP had hoped I would last a few weeks in NSR). However I am significantly worse now than Sep 14. AF can deteoriate.

One aspect that an EP will consider is the fact that the longer you are left in AF the harder it is to correct and return you to NSR. Therefore if in the future it gets worse and you are symptomatic there may not be an option of an ablation. The fact that you are almost 50 could give you points so to speak because you are young.

Also be aware that once you have AF certain operations and procedures won't be undertaken on you and for those in persistent AF the list of restrictions is longer. That could make a difference especially if there are hereditary conditions or proneness to operations or procedures or you are anticipating one.

I would also ask about Anticoagulation for now and in the future. I suspect likelihood is no at the moment but it needs to be a formal assessment.

[Goldfish_ in reply to PeterWh]

Agree with the others

You can calculate your risk score for anticoagulation

mdcalc.com/cha2ds2-vasc-sco...

but I suspect you will come out as low risk, not for anticoag as you are young and have no other risk factors from the history you gave

[Adyjc13 in reply to PeterWh]

Thanks for replying.

Iam low on scale for stroke risk, my blood pressure is usually spot on, blood sugars good.

I was told, because I'm not symptomatic and unless I wasn't listening properly that I probably wouldn't get any major increases in symptoms???????? Go figure.

[PeterWh in reply to Adyjc13]

Probably wouldn't but could possibly!!!!

Was it an EP who said that?

I would certainly go and see one of the top EPs.

[PeterWh in reply to Adyjc13]

They are Google now but you will need to monitor regularly sat at least quarterly but ideally monthly.

[RobertELee in reply to Adyjc13]

I would say 'probably' rather than 'possibly'. AF is a progressive condition Adrian - over time episodes will become more frequent and last longer. You are only 50. Give it another 10 years and not only will your quality of life likely to be suffering but it might then also be too late for an ablation. And you'll still be comparatively young.

With NHS treatments becoming increasingly competitive perhaps it's time you stopped saying that you don't get any symptoms. And those who say such a comment lacks integrity, are probably speaking from the back of an NHS queue! When did life become fair......

[CDreamer in reply to RobertELee]

RobertELee - regrettably I have come to the same conclusion but wish it was not so.

[dedeottie in reply to PeterWh]

I would be interested in knowing which operations would not be considered for those of us in A.F. controlled or otherwise. I know that Bob says he would not have been able to have his cancer op if he hadnt had a successful ablation. Is it the anaesthetic that is the problem and if so, why are some ablations done under G.A. since it is usually a fairly lengthy procedure.x

[PeterWh in reply to dedeottie]

I don't know an exhaustive list and I suspect that in some situations it varies by hospital and by consultant. As you say BobD's prostrate (and also some ither cancer ones), varicose veins, some eye ones, certain steroid type injections. It can be one or more of a number of reasons such as a GA, medicines, interactions, not wanting to stop Anticoagulation (this is a more recent phenomenon), various minor procedures.

I was told by vascular consultant that current thinking is that once you are in AF or have been then if a GA is required then it is only used for operations that are regarded as life saving (including heart procedures) or when absolutely essential for QoL.

[dedeottie in reply to PeterWh]

Thanks Peter, that all makes sense I suppose .Thank God for spinal blocks is all I can say!!! X

[PeterWh in reply to PeterWh]

I should have also said that if it was me getting it at your age I would definitely go on an anticoagulant because I have seen the devastating effect of a stroke on a number of people including one early 40s and two in 50s.

[Adyjc13 in reply to PeterWh]

I don't understand Why they haven't then.

If you ask questions they alway seem to answer in a roundabout way, Or is that just me????

They say I'm at lower risk, no blood pressure etc

They also said the risk of a bleed is greater than a stroke??

[PeterWh in reply to Adyjc13]

No often they do talk in a roundabout way. One of the big problems is that they are trying to cover themselves from being sued. Another is that EPs and also catheter ablations are very new in medical terms. EPs are a pretty rare bunch of specialists. Other complications are the fact that the physical aspects of the heart and patients responses to treatments vary considerably.

When ablations were being discussed with my EP I said to him that I wanted him to be open and honest with me as to the number of procedures and chances of success in MY case (stressing specifically). He told me that In my case he felt that it would take two or possibly three attempts. Therefore 0% chance first time.

[pip_pip]

RobertELee - Absolutely. !

[Cclegg]

At the very least you should be on anticoagulant it's so dangerous not to be.....hope you get sorted soon....very best wishes.

[Jennifer53]

I have to agree with @reedman. I am 54 with life long AF. Mine was discovered when I had a stroke at 51. I have not been offered any treatment other than anti coag. My QOF is good. I work, am back at college. Suffered severe depression after my stroke. Had a lot of talk therapy and still have to work at keeping my mind strong. What Im saying is, please talk to your doc about anti coagulation. It is a small price to pay for peace of mind

[captainKFF]

Hello Adrian, What is your heart rate during Afib, is it lowered by medication? hope you feel better.