Turning 65: 64 and 365 days no need for... - AF Association

AF Association
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Turning 65

64 and 365 days no need for anticoagulants next day at 65 I need to be on them. Need convincing that benefits outweigh the risks. I have PAF controlled by flecanide and bisoprolol. Touch wood never had an incident in two and a half years so as I say need some convincing.

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Simples,

Accept that benefits minimise the risk, or take the risk and probably have a stroke! As I say, simples.

Remember this, 65 now, 66, 68 70 and so on and the risks worsen.

Ultimately, your call ...do as you wish ....🙂

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Your choice but I think you must underestimate the risk of stroke and if you survive how seriously it may affect you and over estimate the risk of anticoagulation. In fifteen years still playing with race cars and sharp things I have never had a serious bleed. Been on anticoagulation since age 58 by choice.

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May I just ask how long have you been a doctor?

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Perhaps you should be more polite when you respond to someone's question

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Actually I was referring to Highbury response. Regarding "How long have you been a Dr?"I felt that remark was unappreciative and disrespectful of others opinions!! If you don't want to hear others opinions than he shouldn't ask for them.

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I agree!!

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Bob is a very valuable contributor to this forum, and has never claimed to be a doctor.

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Just to set the record straight, highbury44 comments re Doctor were directed at me and not BobD.......

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Then he should be more polite when he responded to the question

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I saw no rudeness in BobD's reply nor did I see any indication that he was dispensing medical advice.

I have always learned from his posts, never felt any rudeness.

We are all entitled to interpret posts including presentation in our own way. But I believe we can be far kinder by stating admonishments and criticisms via PM's (private messages) rather than publicly - perhaps causing embarrassment.

Isn't this how we want to be treated when someone feels the need to correct us?

Just my opinion.

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My message wasn't referred to Bob but to flapjack who subsequently removed his comment

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I’m 54 and on anticoagulants and probably will be for life. When doctors found a blood clot in my heart when they were about to do an ablation that made the prospect of a stroke very real.

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I was heartily glad that I was finally listened to at age 57 . I was diagnosed with AF at age 53, officially.

As my mum died from an AF stroke,as did my Nanna,also Grandad on dad's side..none anticoagulated..I was concerned .I am female,which gives,me a score of 1. I have hypertension,score 2.

I was seen by the cholesterol clinic,who strongly advised my GP that I ought to be on anticoagulant s,again persuaded otherwise by him. then had a TIA, 2 months later.

Hospital insisted I went on NOAC,which I 100% agreed with.

My response is.....take the advice and the medication. Strokes are terrible things,can be a living death,as I have seen.

No brainer for me!

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I thought anticoagulation sounded very scary and refused it initially and then agreed with great reluctance and felt extremely moribund. I have completely failed to expire like I thought I might and have had no problems, haemorrhages, bleeds, trips to A & E or big dramas. It's been plain sailing. If you have an injury - and I have several swift encounters with the ground and one with a canal bridge - you find blood doesn't flow as liberally as you thought it might. It just takes a little longer to settle down.

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You say you have been incident free for a couple of years, unfortunately the way AF works, you really cant tell if you are having AF through the night when you are asleep. Some people don't even feel anything when they are awake which puts you at serious risk of stroke. Think about this, how many serious bleeds have you had in your lifetime? Probably none. Have a stroke and your life can be over as you know it now. You could be lying unable to do anything for yourself for the rest of your life. I am on riveroxiban now for 5 years and would'nt risk stroke. I have just read somewhere that they now have an antidote for Riveroxiban and one other anticoagulant. Good luck with your decision.

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Absolutely right, I had a seven day monitor which picked up frequent PAF but I never noticed a thing! Apixaban is the other anticoagulant, I prefer it to Rivaroxaban myself.

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But how long did the episodes last.If they are just a few minutes that won't cause clotting

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That's not quite how AF related strokes work as I understand it. I wasn't told how long they lasted, I assume I was asleep at the time.

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So how do the af strokes work?

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Maybe this has some answers

ncbi.nlm.nih.gov/pmc/articl...

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Thanks, getting well above my ability to explain 🙄

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I suppose the line for anti coagulation has to start somewhere and at around 65 stroke risk worsens for all of us with AF. Like you, I’ve had no AF in years thanks to Flecainide but I only have to think of people I know who have had a stroke to be more afraid of ending up helpless than fearing the effects of Apixaban.

The absence of AF episodes does not minimize the stroke risk - that is indicated by our individual CHADSVASC score which never goes down, only up.

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Given the risk why would you not try and reduce it ?

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Been on anticoagulant rivaroxaban now for over 2 years now, had very bad AF had an ablation in May and will be on them for the rest of my life, these new anticoagulant's are so easy to take, no trips to the doc's all the time to check levels, once a year I have my blood checked.

Have not had a problem with this anticoagulant at all.

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I, too, was anti coagulation, primarily because even on low-dose aspirin (some years ago now, when it was 'fashionable') I looked like a battered wife, with bruising visible particularly on my lower arms (I have PAT, Paroxysmal Atrial Tachycardia and take Flecainide) .

For two years my cardiologist asked I take an anticoagulant and I refused but then discussed it with my daughter (a GP) who asked 'Mummy, do you want to die?'. When I answered 'no'. she said 'take the bloomin' drug and live!'.

Having had a friend of a friend have a catastrophic stroke a few months ago, I can understand that it is indeed a living death and if preventable, what is our problem?

I have been on Apixiban for four months and have had few bruises (not none but far fewer than expected) and am a bit of a klutz so have had small cuts but the bleeding has been minimal and certainly not the spurting to the ceiling that I had thought may have happened. With a plaster in my bag, I am happy to live a very happy anti-coagulated life.

Please do reconsider although it may take take something major to help you change your mind - or visit a stroke ward...

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Read this: healthunlocked.com/api/redi...

"Every 18 minutes in the UK someone has an AF related stroke"

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Hi your link doesn't mention anything about anAf related stroke every 18 mins

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highbury44 , look at the foot of their home page.

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Of course you can end up with a stroke from a bleed.My af has been more troublesome recently with daily short lived flutters so I had an appointment with my consultant and I did raised the point of anticoagulants and as I am 59 with a score of 0 and no family history of stroke so he said not to bother.However he did say that if I was that concerned about the issue of stroke your could have a pill in the pocket arrangement to use if I was in af for more than 12 hrs.At the end of the day it is your choice and if NICE guidelines state you should take it then I suppose you should.

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Ay, there's the rub. Anticoagulation is a double edged sword and may prove to have been a mistake. I think it may be a very small number of people who come to grief. As something of a non conformist, frequently in the smaller group when there's and 85 / 15% divide - or even a 99 / 1% one - I felt particularly vulnerable.

I found defying one's doctors' advice was a step too far and therefore eventually chose anticoagulation, considering a debilitating stroke to be a fate worse than a fatal bleed. I don't think one requires medical training to hold this view.

I am over the moon to have become, five and a half years on, as blasé and complacent about anticoagulation as I now am.

I have posted numerous times on this topic, especially some years ago when I was Rellim296.

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HI, I do understand fully your apprehension re taking anti coagulants. I have very infrequent episodes of A fib (that I am aware of!)., my last one being over 2 years ago. I had my first episode of AF in January 2001 at the age of 46. I started Warfarin when I was 57 on the advice of my GP, as I take blood pressure tablets. It wasn't without consulting on this forum as I was very apprehensive. 3 years ago I changed to Apixaban with no problems. I would still prefer not to take them , however the thought of having a stroke terrifies me even more. The decision is yours of course. Best wishes Kath

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Hi, I'm 59. Was diagnosed with AF at about 57. Fit, active, not over weight, low blood pressure, normal cholesterol so no anticoagulant.

In 2017 age 58 i woke up on holiday and the right side of my face felt numb, like I'd been to the dentist. Wasn't unduly worried and it wore off that night. Week later same thing. Few weeks later noticed blurring in my right eye which came and went. Also muscle twitching in my right bicep that lasted weeks.

Convinced I had a neurological issue I saw a neurologist. After a scan and checks he concluded I was having transient ischemic attacks.

I'm now on the anti coagulant Apixaban and things seem to have settled. Apart from feeling like I'm becoming a chemistry set from taking different tablets and the tedium of remembering to do so it's not so bad.

I think I was getting them because, despite being on beta blockers and even upping the dose, mine don't keep my AF under control 100% and it's those little abnormal runs that put you in danger of stroke.

PS when I was first diagnosed I wore a heart monitor for a week and only noticed Afib 9 times in that time. However the results showed I was having AF most nights in my sleep and many more times during the day without me noticing.

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Hi Bairns

Why don’t you check out York Cardiology Dr Sanjay Gupta “I have Afib but don’t want to take blood thinners “ on You Tube

If you have a low chads score 1 or less consider taking it , recommended if 2 or more

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I am also just 65 and controlled by Flecainide with no comorbidities. My personal view, which I accept is in the minority, is that the medics should offer an age range rather than 65 when you start anti coags i.e. anticoags should start between 63-67 (if no other CHADS score) dependant on individual circumstances.

I have adopted many lifestyle changes and take supplements such as Krill oil and garlic, on the negative side I have Factor V Leiden; my current intention is to look at anti-coags seriously when I reach 66.

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I was very apprehensive about starting anti coagulation 4 years ago when I was in my mid 40s. PAF was diagnosed after a holster monitor showed some runs that I'd been unaware of. I also suffer from ITP (low platelets) so the thought of taking warfarin really scarred me, and my cardiologist. They wrote to my heamatologist who felt that the risk from an AFIB related stroke far outweighed the risk of a bleed and with regular blood tests could be monitored closely. In the early days I'd rush for a blood test if I had any unexpected bruising, but I'm less likely to panic now.

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PAF controlled by flecainide and bisoprolol should attract a lower stroke risk than taking no medication at all. The issue is the balance of risk. I think the considerations below are relevant, in addition to those posted by others (above).

Guidelines differ; some recommend anti-coagulation from age 75.

Anti-coagulation does not prevent all strokes.

Not all strokes associated with AFib are totally debilitating, although some are fatal.

I had a stroke associated with AFib when I was 67. I was not taking any medication, being just over the 65 threshold and generally fit and well. I am making a good recovery, and have a target of being almost back to normal by year 2020. However, I am now taking Apixaban, because I want to do all I can to prevent another stroke. In conclusion, I am not making a recommendation by implication, just presenting a slightly different angle on the matter.

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Yet again we have someone saying '' never had an incident in two and a half years''. how can anyone diagnosed with P-AF know for sure they haven't had an episode unless they are permanently attached to a ECG machine.

As I have said on here many times, I thought I knew exactly when I was having episodes of P-AF because I usually have very pronounced symptoms but I found out accidentally when doing a routine BP check that I also have short episodes of P-AF with symptoms that go unnoticed. I can't be the only person to whom this happens.

Whether or not to take anticoagulants is of course a personal decision but I think people with P-AF need to be aware of the possibility that short 'silent' episodes may take place.

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I have an Apple Watch which tells me when I go below 50 and above 100 an app that displays a graph of my previous 24 hours which shows no PAF

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Brilliant, but as much as I admire Apple devices I don't believe they are prophetic 😁

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I have always believed, based on what I have read, that it takes hours for a dangerous blood clot to form in the heart. If so, there should be comfort for some sufferers. Nevertheless, it is best to be on the safe side.

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How long were your short episodes?

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Hi Highbury :-) I am not sure because I am not aware when they start having found them by accident when recording my BP or checking my pulse. When I find an episode this way it usually lasts under an hour and although I have the characteristic irregular pulse it is not particularly rapid unlike my highly symptomatic episodes which last up to 15 hours.

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Hopefully Bairns36 has received sufficient replies to be convinced that the benefits of anticoagulation far outweigh the risks and as a consequence, will make a decision that will help reduce the risk of stroke. I will be deleting my original reply as I am anxious that it does not become a distraction.

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You have hit on the same thoughts as myself. The threshold is so abrupt.

Currently if your CHA2DS2-VASc is 2 then your consultant will offer anticoagulation ( If CHA2DS2-VASc is 1 then consultant will ask you to consider coagulation) In both cases it is your choice as to whether you take it but this scoring system appears not to take into account your burden.

The importance of 'offer 'and 'consider' are very important as I translate 'offer' as the consultant saying in accordance with the guidelines you should take it but you can refuse whereas 'consider' means 'it may be in your interest to take it but its your choice.

1. My first question is how long does it take to form a clot when in AF.

2. How long does one's AF last as a proportion of total time. (burden time)

Studies have evaluated AF in a binary fashion ie have or not have it, and have not investigated AF burden.

In my own case I had an ablation some years ago to help with my AF and it has been a success and 48hr monitors have shown that my AF over several 48 hr intervals is less than 1% of the time.

I do on the other hand have several ectopics /day

I currently have a CHA2DS2-VASc of 1 ( As AF stays with one forever in statistical terms) and discussed with my consultant options. Based on the ECG 's I decided not to take an anticoagulant as my burden is low.

So to the first point studies have shown that clots can occur in as little as 5 and half hours others have shown 2 days. My AF's last less than this ( burden of 1% is around 20mins of AF) Somewhat less than the lowest consideration of 5.5 hours .

This information gave me the confidence to say no to anti coagulation but I remain open to evidential .

I hope it helps with your dilemma.

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It is of course possible for a non AF person to have a blood clot and stroke, so your evidence is flawed.

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Please expand on this, as what you say is correct that a Non AF person can have a stroke, but studies are studies so what is the flawed element.

My decision not to anti coagulate was based on a holistic approach by my consultant to my AF burden , highly symptomatic ,backed up by testing.

As you say in another post you have permanent asymptomatic AF and under those circumstances anti coagulation is essential.

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You seem to have based your decision on the percentage of "burden" time, almost believing that blood clots would only appear when you were in AF, but as we know people without AF can have blood clots with life threatening results. So a clot can appear 100% of time, not just the 1% burden time. And as none of us can see into the future, none of us can predict which people on what days will have strokes or pulmonary embolisms. What we do know is those people who have AF, and those people who are over 65, or thereabouts, are more likely to have blood clots than those aged 20-40.

I had paroxysmal AF for 22 years , with Flecainide reducing the episodes to one or two short (2 hour) episodes a year, always in the evening. Then I saw my consultant and he informed me I was in Persistent AF, now Permanent as I have not reverted to Normal Sinus Rhythm in 3 years.

When did the Paroxysmal become Persistent? I have asymptomatic AF so there were no warning signs. When did the burden go from 1% to 100%? Was it an hour after I'd last seen a consultant a year previously, or 2 months after, or 300 days after, or 10 minutes before he found me to be in Persistent AF? I felt no different throughout the previous 8 years, AF controlled by Flecainide except for a couple of highly symptomatic episodes a year. The only difference to me was that I didn't feel as if I was having any more episodes.

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Thanks for your thoughts .

The choice by a consultant as to whether not to coagulate is to add up the patient’s risk factors for those that have AF. This is the CHA2DS2-VASc calculator.

It is used for AF sufferers only . It does not cover for individuals that have heart issues that may lead to stroke that do not have AF.

Hypertension is much more serious a risk and accounts for some 50% of strokes, AF some 25% , so it is logical to bear down on blood pressure via pharmaceutical methods but the first course of action is not anticoagulants and one has hypertension 100% of the time.

As your no doubt aware most embolisms happen to people who have risk factors for blood clot formation, such as smoking and heart disease. Other risk factors for other types of emboli include high blood pressure, atherosclerosis, and high cholesterol. These other risk factors don’t promote the use of anticoagulants as a first line of attack even though as you state clots can form 100% of the time.

I have had AF for some 19 years but no other risk factors as described above. The only increasing risk is my age and my CHA2DS2-VASc score is 1 as I am 72 that makes me an intermediate risk for a Thromboembolism event. A Consultant would at this level of risk ask the patient to CONSIDER whether they would wish to take up coagulation. As my AF burden is low I considered , after discussion with my consultant, agreed that it was premature to take anticoagulants as the bleeding risk outweighed any benefits of coagulation. If/when I reach 75 and if there are no other co morbidities my score will go to 2 or High Risk. This will trigger another discussion with my consultant and again the AF burden will be part of that discussion.

The CHA2DS2-VASc score does not take into account AF burden, it assumes that patients who have low levels of AF burden at the same risk as those in permanent AF which is illogical. My Consultant has indicated that there is some professional research that even with a nominal risk factor of 2 coagulation therapy with a low AF burden may not be of any advantage.

AF is responsible for around 25% of strokes . Anticoagulation for those with AF does not guarantee you won’t have a stroke although it reduces strokes by around 60%.

So those with AF and prescribed anti coagulants are likely therefore to still account for around 10% of strokes.

My AF is symptomatic and took flecainide for 8 years until my AF was some 10- 12hours/day when I had a pulmonary vein isolation ablation. This has been a ‘success’ and I now only take a replacement drug propafenone as a Pill in Pocket . I also have a Kardia monitor that I carry and use each day as a check.

In your case being asymptomatic I presume it was found out randomly and in your position would take anticoagulation therapy. In my case it was like having two dogs fighting in my chest and remains so. I do find it difficult to understand how one can’t feel the irregular beat or it not affecting how one can operate whilst in AF as mine is debilitating. Other contributors have discussed this in some detail.

However I have no issue with anyone wishing to take anti coagulation therapy if their CHA2DS2-VASc is 1 as I understand the emotional support it can give.

It is not a case of evidence being flawed but taking note of advice from my consultant and trying to understand how the risk factors are used.

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bradforddistrictsccg.nhs.uk... is worth a read. I wouldn't be without anti-coagulation. I feel much better protected against a stroke. I have permanent asymptomatic AF. Flecainide is of no use against permanent AF, and I had unacceptable side effects from bisoprolol, so my only AF related medication is anti-coagulation. Warfarin by choice as I also had a rare painful side effect from Rivaroxaban. I self-test, so there's no inconvenience. I eat what I want to eat.

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As others have noted, your risk of stroke increases with age, and if you’re hypertensive/diabetic, even more. There are reversal agents now for Eliquis and Xarelto, so the benefit far outweighs the risk! Just picture yourself totally disabled from a stroke. Good luck.

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HUMPH! Not one of us want to take these drugs for fun!!! But we are educated enough about this condition that we take preventive steps.

Ask your lucky self.... which one of your loved ones will get the honor and might I add, the horrendous burden of providing for your daily needs if a stroke leaves you a dependent? Truly, your loved ones deserve to live their life without that addition and they deserve your doing what you can to not put them in that predicament, don’t they?

Nothing more convincing than data. Read the actual stories of people who have had an A-Fib related stroke and lived through it to tell the story.

You have to convince yourself, otherwise you won’t be compliant and get into deeper trouble.

It only takes 1 clot.

1.

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I agree that the line in the sand doesn't make sense. It's just some average. Works great for a group but not so much for an individual. It wasn't early enough for me. I had a stroke at 59 from undiagnosed PAfib which luckily I recovered from. So I went from 0 to 2 on the CHADS2. It affected my ability to read and see. There are plenty of other poor souls on my side of the average or bell curve or 85th percentile or what ever that have not done well. I have been on Wafarin ever since and consider myself very very lucky. I still mogul ski, mountain bike, roller blade, scuba dive, and do white water. I make sure my INR is just above the minimum the day of and keep it mid range the rest of the time. I bruise easier but that seems to happen more from home improvement projects.

Happy Birthday and good luck to you if you choose to bet against the house.

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To state the obvious coagulation is a very complex subject for example aspirin has a different effect on coagulation compared to warfarin on various parts of the pathway. With AF blood does not get pumped correctly around the body and so there is pooling of blood in the heart ie the left atrial appendage. At any time the blood can clot and these clots can move to vital areas within the body such as the lungs or brain, hence the meds for control .

I’m a clinical Microbiologist and as soon as I was diagnosed I asked to be prescribed coagulation meds but that was my choice

Hope this helps

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Hi Bairns. I'm reminded of an ad about stroke prevention I see frequently on TV here in the US. Brief and to the point.

"The first symptom of a stroke IS a stroke."

Take care. irina

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You might be interested in my reply to Thomas45 that I sent some minutes ago as it covers the issue you have brought up in a more detailed way than my first reply to you.

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Just wanted to add my personal experience to the anticoagulant debate.

I opted to have a Left Atrial Appendage Occlusion (LAAO) in January 2018 with insertion of a Watchman device. It's not for everyone but I was not only worried about stroke risk for myself but also what I called 'under the radar' mini bleeds from anticoagulants. There is a strong history of strokes and dementia in my family.

Prior to getting off these drugs. I chose to monitor my own INR's weekly at home for several years and did very well. I chose Coumadin/warfarin for 2 reasons. It gave me tighter control as I didn't mind the testing and made me feel more secure.

The newer DOAC's/NOAC's also work well for many people but when I can I like to use older more tried and true meds that have a long period of time to allow discovery of potential problems. This is just my own personal bias.

If I had not been a candidate for the procedure I most certainly would not take the risk of not being covered against strokes.

As I've expressed often- for me long term debilitating illnesses that might require my living in a nursing home is not quality of life for me.

The procedure involved tapering off the coumadin then taking Plavix for 4 months, then-done. I rarely drink anymore but I did take my last coumadin and then Plavix pills with a glass of champagne. (My EP said have a glass for him!)

Just my opinion. My Watchman device is doing fine. He'll be one year old in a week (January 15th) and his name is Sydney. 😊

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