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Atrial Fibrillation Support

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What can I expect?

Treenol profile image
13 Replies

I was diagnosed by my GP with AF at the end of August last year and have been on the waiting list for the cardiology clinic since then. I have been taking 5mg of bisoprolol and 75mg of aspirin daily since then. The last time I saw my GP about an unrelated matter, I told him I was still waiting. He said not to to worry since I would probably be told to take the same medication anyway.

I would hope that a more expert consulatation would give me more, and better options. Or is he right?

I don't know what to expect or hope for. Any advice or thoughts please?

Thanks

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Treenol profile image
Treenol
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13 Replies
BobD profile image
BobDVolunteer

Dear Treenol, this is appalling! To start with your GP should have had you into see a cardiologist much sooner than this and trust me there are many other possible treatments.. At the moment the bisoprolol is merely keeping your heart rate down to an acceptable level during AF one hopes and why you are on aspirin is anybody's guess as unless you have another heart condition it is the wrong thing. The biggest risk for patients with AF is stroke as it makes one five times more likely to have one. Aspirin is about as useful as a chocolate fire-guard in preventing strokes in AF and if you are at risk you should be on anticoagulation such as warfarin. If you look on the main website there is a thing called CHADS2 score. which you can do for yourself and workout if you are at risk. It depends on age and some other factors.

I must also warn that cardiologists are generally plumbers and since AF is an electrical problem you ought to see an electrician. These are known as electrophysiologists and are cardiologists who specialise in rhythm problems. There is a list by area on the main website and if you do not get some satisfaction soon then I suggest that you find one near you and demand that your GP refers you.

I despair sometimes at GPs like yours but at least he has diagnosed it. Many seem to miss it altogether or in my case for ten years treated me for something completely different, It was only a house move and change of GP which discovered the truth and enabled me to have the correct treatment.

I must also urge you to look at the publications on the main website which cover just about every subject AF as knowledge is power and you need some right now,

Good luck and do ask any questions which you think of and we will all try to give you support.

Bob

Beancounter profile image
BeancounterVolunteer

Hi Treenol and welcome

I agree with everything Bob has said, you simply should not be on a waiting list that long after diagnosis it's ridiculous, ask your GP for a referral to the urgent chest pain clinic, that's usually within 7 days.

Yes there will be other options, but you need the accompanying tests to see what is happening and to understand your AF. It's a "mongrel" condition and appears in people in many different ways, and with many different types, typically you should expect a number of ECGs, probably an echogram, and maybe also a dye type cardiogram, all of which will give the consultant a better idea of what is going on to discuss with you.

You need to read lots now, knowlegde is king, and the AFA website is probably the best possible resource for this, and lastly do your own CHADS2VACS NOW you can do it on the internet here mdcalc.com/chads2-score-for...

If you score is 2 or above you need an urgent appointment with your GP for anti-coagulation (usually warfarin) If 1, you need to read and think about it and possibly still be on warfarin, and even with a score of zero read all you can so you understand the risks.

Be well and please ask us anything

Ian

fallingtopieces profile image
fallingtopieces

To wait 7 months and still not be seen by an ElectroPhysicist is not right. To have this hanging over you whilst you worry and wait with unanswered questions will not be helping your condition either.

My advice to you is do look up a couple of nearby hospitals and check to see if you have an EP cardiologist in one of them, perhaps you could then ring the hospital and ask to be put through to that consultants secretary. Speak to her(usually a her) and ask what the wait is and ask if she can do anything for you.

There is an NHS system called 'choose and book', where your GP should have been able to instantly access the appointments with your preferred consultant online for you and made you an appointment right then and there when he diagnosed you(unless things have changed very recently). I can only think that your GP wrote to the hospital instead, perhaps inferring that there was no urgency(?)with your case.

It's true to say that those who will not put up with this type of delay and feel able to push for the right treatment will get it usually. Not fair I know. Things are definitely going backwards in the last couple of years regarding the NHS.

I know I've said this on here before, but when I was given a 6 week wait to see an EP consultant, I looked him up online, Found he worked privately too(they all do),rang the hospital, asked what he charged and booked a private appointment with him for the following week( mainly because I was due to go on a holiday in 2 weeks to a remote location and too afraid to go not knowing how serious or not things were). That cost me £200 plus £80 for an ECG. Then I was back on NHS appointments with the same consultant. I do know that not everyone can afford to do that but for me and my peace of mind it was worth it at the time.

Have a look at the 'Choose and Book' website, be strong, tell your GP you want an Electrophysicist and insist he makes your appointment.

Good luck.

CDreamer profile image
CDreamer

I agree with everything said above. I just went along with what a referral through my doctor to local cardiology dept, didn't see an EP and didn't get the advice, options or meds etc that I should have. After 8 years I fell upon this site accidentally and found out how important it is to see an EP and booked an appointment with someone from the AFA site the next day.

Your doctor sounds as if he needs a bit of a gentle kick up the rear to get him moving to help you... Just saying, I agree with everything that's been said, I was on aspirin at first but reading up on it, I realised it was no use for AF and luckily my doctor agreed to put me on warfarin...

pip_pip profile image
pip_pip

I never saw an ep for yeas but I did see a cardiologist the same day I was diagnosed. My gp sent me straight to the hospital with cover letter.

I suggest you go to or contact the cardiology dept for details of your referral. Better to go there. The GP won't do it for you. Once referred, that's it.

Once the ball is rolling you'll be fine.

Pip

mumknowsbest profile image
mumknowsbestVolunteer

Just to say I agree with every thing that has been said and that the NICE recommendations for AF due for publication in due should improve this situation in the future. No help to you, but hope for many others

eileen

How does your GP know the EP will give you the same drugs? Mine certainly gets it 100% wrong. They routinely prescribe beta-blockers for arrhythmias but it is completely the wrong drug for me. I need rhythm control drugs which a GP I believe is not even allowed to prescribe.

Insist on seeing an EP. If you can afford it, maybe go for a private consultation first off (£100-300)? That's what I did as I got fed up with waiting and being told everything was fine, and it wasn't, and that was without a diagnosis!

PS. First they'll do is probably fit a halter monitor to you for a day or a week to record what's happening, then look at the recording and do a proper diagnosis. Then take it from there according to what they find. Appropriate drugs, ablation, anti-coags, or nothing.

Good luck

Koll

jondeanp profile image
jondeanp

I was suspected of having AF by my GP in mid December. He phoned the hospital and i was in a bed with ECG leads attached to me within the hour

I was given medication and sent home the same evening thankfully. I'm currently on my 4th week of warfarin awaiting a cardioversion

I think your situation certainly requires a little more urgency than you have received so far

weezergeezer profile image
weezergeezer

Treenol,

I had a similar experience, I believe there is a system in place within the NHS which is to give 75mg of aspirin along with some other medication and just wait a see how it develops, I placed trust in my doctor, it was a mistake, by reading posts on this website I realised there were other options and choices available, I became more aware and better educated in Afib , it gave me the confidence to go back to my GP

my Afib had become unbearable (2 –3-4 times a week) I revisited my GP and was moved up the list and actually got to see a cardiologist, an EP, and finally an ablation after some two and a half years of first being diagnosed, now with hindsight I’d do it all different of course, I wouldn’t wait, I’d push more for treatment not just medication.....good luck

dedeottie profile image
dedeottie

After a nightmare 10 years withundiagnosed and untreated A.F. I had 3 T.I.As. I was then put on an 8 month waiting list to see a cardiologist. Despite much complaining from myself, nothing would hurry the process so I looked up the most highly regarded E.P. in Cardiff and booked a private appointment with him. It was the best thing I have ever done. I paid £280 for a long consultation and e.c.g. and came away with some medication which has stopped the A.F. from happening. I can't believe how much better I feel and am cross to think that I had to wait so long for help. The E.P. said if the meds stop working he will do an ablation so I have a game plan and am happy with that. Do press for an E.P. appointment or pay to go privately. If it was your car you probably wouldn't hesitate,that's how I think of it. Good luck.x

Treenol profile image
Treenol

Thanks a lot for all the replies. It gives me confidence to give things a hefty push as well as the nudge to myself to swot up as much as I can.

Just a little extra information brought up by your responses: I am a 60 year old male. The AF is continuous with a reduced rate from the beta blocker.

Thanks again

downbarns profile image
downbarns

I agree with all that has been said . Back in September last year my AF went from being irregular ie it would come and go to being with me all the time .I went to a&e and from there things started moving. I had an ablation on 5th Feb. I was on beta blockers and warfarin before my ablation and so far touch wood all seems to be fine. I hope you get sorted soon .

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