AF Association
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AF

After reading several comments here, I've realised how little I understand about AF. Not one doctor has ever explained this condition to me, in fact, I only learned that I've got it, when my cardiologist mentioned it in conversation last year, and I've had it for four years! It makes me all the more determined to ask for an EP referral.

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The main thing is to be anti-coagulated where appropriate- hope this has been discussed?

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Yes, rosy, I'm on warfarin, but was only put on it 4 weeks ago...after 4 years without it ever being prescribed!

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That's my biggest 'beef' with the NHS.......thye just tell you you have got it and leave you to get on with it............we need a campaign for information to be given at diagnosis!

Leaflets/links etc..........I wasn't told a thing....hurrah for this web site!!

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Completely agree, as will many a cardiologist and EP.

Because of this, my own experience, I recently helped organize a Cardiac Support Group through my Patient Participation Group and last Friday we held our first meeting. Lack of follow up, information and support was the biggest gripe. We had our local EP give a talk and he said that as magnificent as the NHS is (was?) things are getting a whole lot tighter. Less time, more patients, fewer resources.

What is needed is therefore not going to be supplied by the NHS so no use looking in that direction. I have had a lot from the NHS so decided to try give something back to the community. We had 40 people to our first meeting and 20 have signed up for an on-going group. All were delighted with the talk from the EP, who is very pro-active and was very generous with his time. He is also organizing an event in the Exeter area which will be an afternoon in June/July (it's on the AFA website if you want to register interest).

Whilst I agree with what is said, I would also like to pay tribute to the people who selflessly give of their own time to help inform, educate and support, including all the people on this forum.

I rather think we are all going to have to be a little more proactive, if we are able, to help ourselves and others who may be less able.

All I can say is that the response I had from our meeting was very appreciative and the EP said for him it was time efficient as he could talk and answer so many questions at one time. I would add that this was in his own time.

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I am so sad when I see that despite all the efforts of AF- A,, the many conferences , the All Party Parliamentary Group on AF , NICE who have laid down guidelines and groups like yours CD, I still read that people are left ignorant of their condition. Whilst I agree and have always said for many years that we need to take responsibility for our treatment by learning all we can and becoming a partner with our medics rather than just a customer it does show that we still have a long way to go. Never give up!

Bob

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Agreed Bob.

I don't think I am particularly popular with the medics. I started out changing cardios, then insisted on seeing an EP (my cardio said 'not yet'), I have consulted two Alternative Practitioners and I don't bother discussing it with my GP - even though he is very good on a variety of stuff over the years.

My advice is collect as much info as possible to stay in control, let your medics and Alternative Pracs. know diplomatically that they are just part of a team, which includes yourself. My cardio gets a typed sheet of what's happened since the last consultation and what I am looking for. I push them as much as I dare in good humour without losing their cooperation and hopefully gaining some respect. I should add that I have had to go private to get timely advice but all consultations over the last 12 months have cost less than my dentist!

With this excellent forum as well, I think I have achieved a level of understanding that puts the whole issue 'back in the box' for a while.

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Agreed Bob!

By the way we had an excellent start and I have so much support from Dr Matt Lovell and the whole staff and patients of my GP surgery without whom it wouldn't have been possible.

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I will make the trip down one day!

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Dr Lovell is the EP I want to see!! I want my cardiologist to refer me to him. I found an online list of EPs and Dr Lovell was listed as working at the Royal Devon & Exeter hospital, 50miles from me.

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Good choice!

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Watch out for the Patient's Day he is organising sometime in June/July in Exeter. It will be half day.

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I wonder if this terrible situation will continue until the first person sues the NHS for large sums because they've had a major stroke thanks to a lack of interest in their condition... Awful thought.

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That has already happened.

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Oh really?? Wow. I didn't realise. And doctors are still not doing what they should? That's appalling.

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The trouble is that it all comes out of the NHS budget, which means less spent on better resourcing - if a hospital Dr and if a GP - their insurance - which means the premiums rise which means less doctors want to be GPs, which is now the case. I know it is getting quite extortionate to get professional liability insurance, think thousands per year.

Personally I would prefer to see much better monitoring and best practice initiatives. It is starting to happen, my lovely GP has taken early retirement and will be doing the job of inspecting and recommending best practice as a part time job, so sorry to see him go but no one better for the job. The practice couldn't fill his post so have employed 3 part timers.

I really would hate to see us go the way of USA although it looks like we are headed that way!

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It looks like a nightmare... Quite frightening. Best of luck to your GP in his new job, it sounds like your area is going to get the benefit of some wisdom at least.

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Like you Margar17 I also am on a steep learning curve re AF. This is on behalf on my husband who wouldn't bother to find out but just take the medicine and do as the dr ordered - no questions asked. Dr. knows best etc. My own feeling is that knowledge is power. Not that he is on any meds yet, seems the dr is 'looking into it' and will get back to him in a fortnight - eh? what do I make of that? It may be something to do with the fact that he has terminal cancer of the bile duct, although for now [fingers xed] that is not giving any problems. But that was picked up due to faulty liver function tests and I think some of the anti coagulants are not to be given when there is a liver problem. Not sure about that, perhaps someone could enlighten me?

So many of the acronyms used here mean little to me, EP for example - what is that please? PAP is another acronym I've seen here and no idea what it stands for.

My husband had AF on discharge from hospital 2 years ago [unrelated problem] and the GP raised the issue on a subsequent visit and took time to explain it then sent him to a cardiologist who did an ecg which was fine, so nothing more was done. He meanwhile had no idea there was anything wrong until I noticed it on a blood pressure reading, that I did myself. He has very low BP by the way.

So any helpful hints and tips and other info are most welcome. Thank goodness for Google and this site too of course.

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Hello, Gardengnome. Its very alarming, isnt it, that not enough information is given to patients about their conditions. Thank heavens for the internet! All that I've learned, so far, is from this site. I'm so thankful for it and all the kind helpful people here. EP is for electrophysiologist, a specialist in AF. I dont yet know all the acronyms in use here, but I expect someone will enlighten us! Meanwhile, keep watching on this site and hope all goes well for you and your husband.

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I am sorry for the acronyms PAF = Paroximal Atrial Fibrillation, PIP = Pill in the Pocket, means you only take meds at onset of episode.

Somewhere there is a post with a list of all the acronyms, I think it is a 'Pinned' post.

I would suggest you go to CAREAF.org and read/download the pack the AFA have prepared and ask your husbands to read. I found it wasn't until I asked the questions I didn't know to ask I got anywhere.

Ask away for anything you want to know, someone will reply, it's a fab forum and got me through, now no more AF and no meds after an ablation. Many of us find that we know more than a lot of the GPs as unless they have a special interest there is so much information that just wasn't available when they did their training. And some cardiologists are not much better, hence important to see an EP who is the specialist. Best wishes CD

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Thank you CDreamer, this is all so informative and helpful.

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ThanksMargar17 for the info re. EP. I did forget to say that my husband had another ecg recently after I mentioned to the dr [who is a friend incidently] about the irregular heart beat symbol consistently showing up on the BP monitor and I assume this confirmed the AF. Hence she 'is looking into it'. No doubt she will be in touch soon.

One thing I've learnt here is that AF can come and go and won't show up on an ecg unless one is having an episode at the time. At least I think that is what I understand!

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Yes, that's right... it's luck if they catch an episode on an ecg

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The CAREAF website is very explanatory although I will need to read it through several times to take it all on board I think.

Last June my husband took himself off to the dr, well the nurse actually, as he had the feeling something 'wasn't quite right' in the chest and he asked himself for an ecg. They gave him a full blood count too. Presumably all was well at that time because AF wasn't mentioned, although there was a query re a thyroid problem, not sure if that was relevant or not. The nurse was cross and said it's the dr who orders ecg's not the patient! But looking back I wonder if it was indeed an episode of AF that caused him to go to the GP in the first place. He has been very tired and weak since then and I read that tiredness is a common symptom. I

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There doesn't seem to be any logical routine in treating Afib and keeping a check up on patients and the medication they are on and how they react to it. Without forums like this I too would be in the dark, as the alternative is trying to see the GP to see if I am tired, exhausted due to Afib is my IBS worse because of it, is my acid reflux worse because of it and the medication. I'm on Apixaban but the GP never suggested to carry an information card re this medication in case of an accident - this I got from a website.

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