Feel a bit abandoned! : Just wondering... - Atrial Fibrillati...

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Feel a bit abandoned!

Lizie-Loo2013 profile image
12 Replies

Just wondering how often or necessary it is to have a hospital checkup?

Have not seen a consultant/AF professional in 18 months. I was expecting to be called for a yearly check?

Not too sure of how to go about getting an appointment, and there are several questions I would like to ask.

Also wondering - to all AF patients get appointed an arithmia nurse? Or perhaps someone contactable for information?

Many thanks. 😊

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Lizie-Loo2013 profile image
Lizie-Loo2013
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12 Replies
Zabadak profile image
Zabadak

You do tend to be left to GP. But if you ask to be referred to a consultant for a review the GP must do so.

blackcat123 profile image
blackcat123

I can only speak for myself but I have had two ablations and was given no follow up appointment for either. I asked my GP to arrange one after the first ablation as my AF was far worse. Luckily since the second one I have been a lot better but the EP said he wouldn't make a follow up appt. but just to get my GP to ring him if there were any problems! I was given the ward number to speak to a nurse if there were questions but I imagine that would have only been for the first few weeks after the ablation.

I must admit I also felt very abandoned! I can't understand why they wouldn't want to see you again to find out how things were going. If I need to see the EP again I will just go to my GP and insist!

CaroleF profile image
CaroleF

I've had one follow up appointment with a cardiologist approx. 15 months after the initial diagnosis of 'probably PAF'. At that last appointment I was told I'd be called again in a year's time. In the meantime my GP had been in touch with the consultant about the medication I'd been prescribed and changes were made in the light of his suggestions. Other than on here, I've never heard of an arrhythmia nurse; it would be great to hear that one could consult someone like that by phone directly.

So .... I think an annual review of your case by a cardiologist is a reasonable thing to expect and I'd be pushing for that with your GP if I were you, or at least asking the GP to ask the cardiologist for the information you want on your behalf.

gwyn53 profile image
gwyn53

Not seen our nurse or ever seen a consultant.

I've had AF for over two years.

Consultant never.

Good isn't it!

DAD4butler profile image
DAD4butler in reply to gwyn53

I had AF for over four yes my doctor just put me on Warfarin I have never seen a consultant and my doctor as never talked to me about it since l just thought that was all that happen and just got on with it .

jennydog profile image
jennydog

This has me a bit worried. I had an ablation at the Liverpool Heart and Chest hospital over 3 years ago. I still have mild occasional AF and know that a 2nd ablation will not be possible due to atrial fibrosis. I am recalled every year for a check up and actually have my appointment booked for July 2018.

Are they expecting trouble?

Finvola profile image
Finvola in reply to jennydog

My thoughts exactly, jennydog. For the last 3.5 years I have seen my cardiologist every six months and he describes my 200mg Flecainide as 'advanced anti-arrhythmic therapy'.

I'm so appreciative of his care but wonder what he expects to happen.

doodle68 profile image
doodle68

Hi Lizie :-) I have never seen a cardiologist, so far I have had one consultation with an arrhythmia nurse last May (7 months after my symptoms became worse) acting on behalf of a consultant who arranged an echocardiogram and prescribed my medication via a letter.

I have an appointment to attend the arrhythmia clinic again next May . It seems the clinic is yearly and when attending one year you make an appointment for the next. As I am taking Apixaban which requires a yearly blood test I am assuming that will be done at the clinic.

I think if your AF is reasonably controlled you are left to get on with it unless there is a problem then the GP can arrange a consultation with whomever deals with your case.

BobD profile image
BobDVolunteer

If you are in UK then under NICE guidelines there is no provision for annual check ups. What is laid down is that if your GP is unable to control your AF after one months then you have the right to see an arrhythmia specialist which may be an EP or an arrhythmia nurse. Too many people never get to see an electrician and have to put up with a plumber who may not be too clued up on AF.

For those wondering about arrhythmia nurses , in general they are trained to a high level (the ones I was involved with were MA level ) and usually attached to an EP department. Of course as will always be the case there are good and bad out there and I'm sure that not all are as good as the one I had for some years. They are generally introduced after ablation to assist in your recovery period but I do know of several hospitals who run nurse led rapid access clinics for new diagnosis. At these you would have a raft of blood tests, ECG and echo cardiogram and be properly assessed for anti-coagulation. Some are licensed to prescribe drugs as well.

Hope that helps.

Bob

Bagrat profile image
Bagrat

I last saw a cardiologist through NHS in 2013. GP has managed me since. Did pay to see Dr Sanjay Gupta which was very reassuring as I can get my knickers in a twist sometimes!!

Mugster profile image
Mugster

It looks like I have been lucky then or perhaps it's the Particular NHSTrust

On first being diagnosed with AF at the preop medical for a new knee last March, I was referred to an EP. He recommended a cardioversion followed by ablation if that didn't work, which it didn't. A senior arrhythmia nurse carried out the cardioversion in August and since then I have seen her twice more, once at my request and she has given me her mobile and said I can ring at any time. She has also called me at home to check how my latest medication change affected me.

I am to see the EP again in December ( an appointment he got me to arrange at my first consultation) where I will discuss another cardioversion combined with amiradone , a procedure the arrhythmia nurse has discussed with me. I am on the ablation waiting list with a probable op next May/ June

Now here I was thinking my treatment was really slow, but it looks from people's comments like I am being well looked after!

Mickent profile image
Mickent

Hi Lizie

I have had permanent Afib since 2006, I had a cardioversion in 2007 which did not work.

It was done privately through company medical health insurance. I was told that private insurance does not pay for check ups. I have asked my GP if I should be seeing a NHS cardiologist and she said no, you only need to see your GP.

For the last 10 years I have been taking Bisoprolol, Dilitaziem, Simvastin & Warfarin.

I'm 64 and have started to feel fatigued and noticed a general decline in my fitness over the last 2 years, not sure if it's the medication or the AFIB.

My heart ticks over between 80 and 100 on average and I feel tired all the time.

I drink around 2 pints of lager a a day. (my only vice, I have never smoked)

I'm thinking of paying to see an Electrophysiologist myself.

Best regards

Mike.

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