My brother told me a nurse has just d... - Atrial Fibrillati...

Atrial Fibrillation Support

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My brother told me a nurse has just diagnosed AF!

secondtry profile image
12 Replies

My email to him follows, thought it might help others in a similar position:

'From the beginning use it as a driver to improve overall health to avoid future issues.

Good news that you are now aware of it, also that it does not stop you doing things (like it did me)

Lifestyle changes will be very important (drjohnday.com/the-promise-o..., unrecognised stress has more impact when we get older eg concerns over business & wife's health & needs to be countered.

My theory is AF is rarely caused by one issue but rather a number of factors that accumulate until AF is triggered; maybe easier if you think about the analogy of a glass that fills up with unsustainable life choices until it overflows.

Initially, the tests are necessary to confirm hopefully that you have Lone AF (ie no contributory comorbidities); I was encouraged by this particularly that arteries were clear, given my cholesterol level of 7. You may have Paroxysmal AF (ie from time to time) or Permanent AF (ie all the time but not necessarily worse).

You need to find a cardiologist that you have confidence in; Health Unlocked members frequently ask for recommendations in different areas. He/She will then very likely suggest drugs or refer you to an EP to discuss ablation.

You may also wish to consider an Alternative Practitioner; I consulted one regularly after diagnosis and have recently listened to another that impressed.

Drugs are important, be aware there is a wide variance in not only what different cardiologists favour but also what works best with each patient.

Anticoagulants will very likely be suggested; the old tried and tested warfarin is derived from clover and although a bit of a faff (visiting blood test clinics) to get the right level, it is still preferred by some. Due to convenience and NHS savings, it is likely the new ACs will be prescribed, which are just taken daily with no need for blood tests. My cardiologist took me off Rivaroxaban (research in USA not favourable) and would only give Edoxaban as cheaper than others; I haven't started them yet. Apixaban though seems to be a clear favourite on the Forum mentioned above. Not sure exactly of your rights but you may be able to insist on your preference and these days in general you have to challenge with diplomacy all decisions from medics.

Lastly, I have found there is no right or wrong way to deal with it and ‘your solution’ will very likely come from various directions eg for me, i turned down the invitation of an ablation and I used Flecainide to buy me time for Lifestyle changes, then those two improved me unexpectedly so much that I haven't changed any of them.'

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secondtry
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12 Replies
CDreamer profile image
CDreamer

Excellent advice.

I think your brother and other recently diagnosed forum members will find your post very helpful but with one or two exceptions revolving anticoagulants.

Although regular blood tests are not required to monitor DOAC’s, blood tests to check the kidney function are required before they are prescribed and these must be repeated certainly annually, preferably bi-annually and in some cases, every 3 months.

The more concerning comment you make is that you don’t take anticoagulants yet, because this could imply that in your opinion, they are not necessary or important. If an AF patient has a CHADs of 1, they should consider taking an anticoagulant. If it is higher than 1 then they are advised and should be prescribed an anticoagulant to significantly reduce the risk of having a life changing stroke. As has been said many times on this forum and elsewhere, there is no 10 minute warning, if you have a stroke, the chances are life will never be the same for the patient or for their families who will need to support them, assuming that is, they survive…..

secondtry profile image
secondtry in reply to

I agree Flapjack ACs are important for the majority.

However, in using this mantra, we must not persuade those few individuals where it will be best not to go on them (reasons will be advised by medics) and also in this age of mandates not to take away the choice of the individual when the decision to go on or not is borderline and of course after establishing this fully with the medics as I have done and will continue to do on my annual consultation with my cardiologist.

in reply to secondtry

Interesting reply but when you are seeking to help recently diagnosed folk, you need to bear in mind they don’t have the knowledge or experience that others might have. You need to also bear in mind the scary number of people that are diagnosed with AF because they have had a stroke. Hopefully you would agree that no non medically trained individuals should try and influence anybody on what medication they should or shouldn’t take. Fortunately, the NICE guidelines which most, if not all UK medics follow, clearly define the procedure for diagnosing AF and that includes an assessment regarding the need for anticoagulation.

I’m only expressing a personal view and in no way trying to detract from your post

mjames1 profile image
mjames1 in reply to secondtry

Well said! But I might substitute "many" for "majority" although statistical data could persuade me otherwise.

But in general, mantras and mandates should not supersede the advise from your doctor and above all your personal choice.

I stayed off NOAC thinners with CHADS score of 2 after my cardiologist put my chance of a stroke on and off thinners on a chalk board. Yes, the chance was much less percentage wise on NOACs but the OVERALL chance of stroke was quite low, a data point often skipped in these discussions here and elsewhere.

Being active in motorsports at the time and the fact that my afib episodes were few and far between plus that I always knew I was in afib through home monitoring (Kardia) we decided together that I would only use NOACs at the onset of an afib episode and for a few weeks after but not every day. It's sometimes called thinners on demand and to be clear is not a substitute for every day thinners when indicated.

I am in no way against Warafin or NOACs and in fact am now on daily Eliquis as my afib episodes started to become more frequent and longer.

But I can't say it better than 'Secondtry" who stated previously: "in this age of mandates not to take away the choice of the individual when the decision to go on or not is borderline and of course after establishing this fully with the medics as I have done and will continue to do on my annual consultation with my cardiologist."

Jim

Ppiman profile image
Ppiman

Added to what you say, a problem with AF is that it is, essentially, an anatomical ("plumbing") change in the sense that the conducting cells have become arrhythmogenic. And they can't change back since, once damaged, heart cells aren't able to be replaced. There are no stem cells of that kind in the heart.

What starts (or, indeed, stops) an episode of AF (i.e. a "trigger", where one can be found or if such a thing exists) is a separate thing from what has damaged those conducting cells, I should think.

Steve

secondtry profile image
secondtry in reply to Ppiman

That's interesting Steve. You clearly know your science and I have no such abilities! I guess that's why people say there is no 'cure' for AF.

However, my approach is to reduce the incidence and give the body time to do the best that it can whilst I focus on lifestyle changes to help. I have read personal stories when the body has healed itself against all the odds and I have also had personal experience with a DVT. I got the blood clot in my leg (due to silly 5 hr car drive without a break) and despite two GP visits it was not diagnosed until too late to bust; consultant's view of the future was not good (ulcers etc) but 20 yrs on and with extra care I have had no problems.

PS Remaining a die hard optimist this popped up re a new ablation procedure on my feed today youtube.com/watch?v=lC_FvU1...

Figbar profile image
Figbar in reply to secondtry

Thank you for this pulsed field ablation video.

Ppiman profile image
Ppiman in reply to Figbar

I’ve always been an optimist, and still have that outlook but this last few years have made that harder all round.

My interest in the scientific side comes from spending years in the medical industry. A little knowledge can be a dangerous thing though, anxiety wise at least!

Your post and ideas are all very useful - thank you again for posting. I haven’t heard anything negative about rivaroxaban, however, and it has the benefit of having a once daily dosage. Could you point me to this study, please?

Steve

secondtry profile image
secondtry in reply to Ppiman

Re Rivaoxaban, my cardiologist didn't quote the study just said the research from the USA was not positive...maybe just for my case.

I agree anxiety is an on-going issue, again I keep it in check by throwing everything at it e.g. minimise work & personal stress, exercise, Nature walks, Mindfullness, prayer and a new hobby or two; not forgetting diet as a happy tum sends a calming message to the brain via our old friend the Vagus Nerve.

Ppiman profile image
Ppiman in reply to secondtry

Rivaroxaban is the preferred drug in the UK, so far as I can tell, although there's no pressure to prescribe one over another; interestingly, in the US, metoprolol replaces bisoprolol, too, it seems.

Steve

Singwell profile image
Singwell

It's a really great email. Thanks for sharing as it'll be so relevant to newbies though John's comment about anticoagulants also must be born in mind.

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