Does PAF permanently damage your heart?

[Hilarie]

I am due to have a second ablation on 12 March and am pretty scared about this as there were complications during the first ablation. (I've mentioned them in previous posts so won't bang on about them now.) I am now in AF about once or twice a week for 12 - 24 hours and feel awful and completely lacking in any energy and very low but when in SR I feel absolutely fine. I also had two stents fitted in 2013 so have coronary artery disease. I am tempted to just live with the PAF. It took me about 15 years to summon up enough courage to have the first ablation and during this period I took every type of medication available to try to stop the AF - none of them helped.

Does anyone know if PAF can permanently damage your heart if you don't go down the ablation route? I am on warfarin.

[BobD Volunteer]

It can cause cardiomyopathy and enlarged (dilated) atrium but both should be reversable if the AF is stopped I believe. That is long term of course. If an ablation will stop it so much the better if drugs fail to.

Bob

[Marion62 in reply to BobD]

Bob,

I am in permanent AF and have a mildly dilated atrium - how would I know when I should be concerned about this getting worse?

Procedures have never been offered or discussed because I am asymptomatic. Rate control drugs prescribed (and warfarin)

Any advice appreciated.

Thanks

[BobD Volunteer in reply to Marion62]

Really sorry but I don;t know that answer to that. One would hope that you have regular checkups to keep an eye on things. Maybe Beancounter knows more since he is in the same boat.

[Marion62 in reply to BobD]

Thanks Bob

Ian (Beancounter) and I are very similar but he is very fortunate to be under hospital care.

That's the big difference. I know him from the London nosh and natters.

My "check up" consists of my GP taking my pulse and BP once a year. Totally inadequate in my view .

I have searched the AF guidelines for GP care but cannot seem to find any information. Will keep looking.

Marion

[BobD Volunteer in reply to Marion62]

CAREAF is a good source of info and you could try NICE for guidelines.

[Beancounter Volunteer in reply to Marion62]

Hi Marion

I know of course about your challenges with the GP etc, but I am wondering out loud if perhaps the AFA helpline might advise you on your rights with regard to seeing, and being under the care of an EP. I must admit to not knowing, and it was one of the questions I asked the "experts" to give us an answer on.

In my opinion GP care is never sufficient for anyone with persistent AF symptomatic or not.

Be well

Ian

[Hilarie in reply to Marion62]

Hi Marion

You mentioned London nosh and natters - is that a support group or an ad hoc group? I went to a talk at Epsom hospital organised by the Surrey ASM and it was great and very good to meet people in a similar predicament but it was a trek from South East London! I would love to find something more local

Hilarie

[Hilarie in reply to BobD]

Thanks Bob. You are a fantastic source of information and support to us all.

[AnticoagulateNow]

Marion, the NHS Patient Choices website (nhs.uk/choiceintheNHS/Yourc... says this:

'If you need to go to hospital to see a specialist, you have the right to choose which hospital you're referred to by your GP.

This legal right lets you choose from any hospital offering a suitable treatment that meets NHS standards and costs.

You also have the right to choose which consultant-led team, or clinically appropriate team led by a named healthcare professional, will be in charge of your treatment for your first appointment at the hospital. You will be seen by the consultant or by a doctor who works with the consultant in their team.'

Your rights. Marion. to go where you like and see your preferred consultant (EP hopefully) are clear. The only stumbling block as I see it is the phase "If you need to go to hospital to see a specialist....." It sounds as though that decision rightly rests with your GP. Mind you it would be a very brave - no, I mean foolish - GP who prevented a diagnosed AF sufferer access to a specialist.

But you say that you are on rate control drugs and warfarin (good for you) and you know you have a mildly dilated atrium. Surely you have seen a consultant in the past. I can't imagine your GP did that without referral to a consultant. I wonder if you simply need to 'ask' your GP for another referral. Sadly, if you don't ask, you often don't get.

[Marion62 in reply to AnticoagulateNow]

Thanks for your reply - I had a consultation with an EP after I had repeatedly asked my GP for over 7 months to allow me to have an echo. The EP discharged me after one visit and refused to allow me to remain under hospital care. The EP said I didn't need an echo but did relent as I was so worried. The results went straight back to my GP. That was around 18 months ago and I haven't seen a consultant since.

[AnticoagulateNow in reply to Marion62]

You are not being looked after Marion. Time to get 'bolshy' methinks.....

[Hidden]

Have you been tried on different drugs? I've had to go through 4-5 different types to get the right one. Not many people seem to mention this and give the impression (to me at least) that they've only taken one or two. Maybe it's taken for granted, if so, sorry.

Koll

[Hidden]

Hi, you may find this helpful, it has about management further down the page but its all worth reading. If you want to have something listed and ask the Dr he will find it hard to refuse when it is recommended on the nhs site.

patient.co.uk/doctor/atrial...

Carole

[Marion62 in reply to Hidden]

Thanks for the link Carole - interesting reading