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Stroke Risk From Afib & The Role Of Blood Thinners

willec49 profile image
62 Replies

I was reluctant to take blood thinners from about the age of 68 to 72. My CHA2DS2Vasc sat at "1" for most of that time until it went to a "2." Actually, my Cardiologist didn't think I needed blood thinners either as I was having infrequent periods of relatively short Afib so he had me on low-dose aspirin. Then, when I was scheduled for my Ablation this past March, my EP insisted I start on Pradaxa which I have been on ever since. This story from Pennsylvania raised this issue in my mind again:

Pennsylvania Lieutenant Governor, John Fetterman suffered a stroke on Friday, May 13. He stated, "I had a stroke that was caused by a clot from my heart being in an A-fib rhythm for too long,” he said in a statement. “The amazing doctors here were able to quickly and completely remove the clot, reversing the stroke, they got my heart under control as well.”

Just a reminder of the reality that Afib really does increase the risk of stroke.

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willec49
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62 Replies
dmjtanner profile image
dmjtanner

Thanks, I heard he had a stroke but hadn’t heard the Afib part. I follow this cardiologist on Instagram and he recently showed an echo with Afib going on and a large clot bouncing back and forth each time the heart beat trying to move thru the mitral valve. I dislike being on anticoagulants too, but that image cured my dislike.

willec49 profile image
willec49 in reply to dmjtanner

You're welcome. Wow! viewing that echo would certainly bring the reality of the risk home in a very graphic way. I guess it takes what it takes for people to learn and change.

BobD profile image
BobDVolunteer

I have never understood this reluctance to take anticoagulants myself. Warfarin has been my best friend now for 17 years and I don't have AF anymore.

Auriculaire profile image
Auriculaire in reply to BobD

Well some of us are unfortunate and get unwanted side effects which actually affect our QOL. This means balancing living every day of one's life with effects one would much rather be without against a stroke that might never happen. I took Préviscan ( a vit K antagonist- Coumadine is rarely prescribed here in France) for several months and had horrible pains in my legs every night . They would come on shortly after taking the pills. Pradaxa gave me gastric issues . Now on Apixaban which again gives gastric issues but milder than Pradaxa and worsens my joint pain. You are lucky that your anticoagulant suits you.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to Auriculaire

HiYES I hav side effects to PRADAXA - hard rash and less energy.

I chose PRADAXA as it is reversible.

cheri JOY

willec49 profile image
willec49 in reply to JOY2THEWORLD49

Oh, sorry about your side effects. I hope they are tolerable. I'm good with it so far.

DawnTX profile image
DawnTX in reply to Auriculaire

Thank you for writing because you brought up things that I have been dealing with that I never would think had anything to do with my meds. I have back issues so usually I blame those because I have been unable to get my surgery yet because of my a fib. I have been on Xarelto since they uncovered the problem is a fib. I never argued because on my paternal side my grandmother died of heart attack on the same day as my grandfather died of a stroke. That is enough for me to do anything I can to avoid a stroke. I am more afraid of that then of dying. For over three months now I have had serious leg problems to the point of barely being able to walk or stand. Again I have been blaming my back but now reading about you I am going to be sure to bring this up because my a fib got very ugly at the same time. Until I see my PE again in a few weeks I am not 100% sure if I had a dual of van of Marshall/ablation also or exactly what. Today is the first time I have been able to be on my feet often on all day and breathe . It has been three weeks today since surgery. Because of you I will surely ask about my blood thinner thank you again

willec49 profile image
willec49 in reply to DawnTX

Thank you for sharing your journey. Yes, this post seems to have laid bare the very complicated and multi-layered issue of when blood thinners are indicated or not. And, the fact that there seems to be a variety of opinions about when and whether to prescribe blood thinners vs aspirin, can only add to the uncertainty, confusion, and anxiety. I hope you get your appropriate regimen sorted out.

DawnTX profile image
DawnTX in reply to willec49

Thank you. My follow up is the first week of June. My doctor is the pioneer of the vein of Marshall procedure now being used. I have been doing more reading this past week and they do not consider failure until three months and truly do not expect great things until between six and 12 months at which time there may be no a fib showing. I have been very depressed because until today I felt as though nothing had changed in fact possibly felt worse. I don’t know what changed from last night to this morning but I will take it gladly. I guess we just have to accept the good with the bad and every time we have a good we should appreciate it

sunlovah profile image
sunlovah in reply to Auriculaire

I can relate. You sound like me. Fighting this as well

frazeej profile image
frazeej in reply to BobD

I have been on Xarelto for 6 months now, and I find it much preferable to the low dose aspirin I had been on for 30 years prior to my afib diagnosis. Much less bruising, cuts stop bleeding faster, and no side effects that I am aware of. I'm pretty sure I will be taking this for the rest of my life, and I'm OK with that.

BobD profile image
BobDVolunteer in reply to frazeej

Aspirin has no place in stroke prevention for AF so good you are now off it.

Milfordhaven profile image
Milfordhaven in reply to BobD

Like yourself BobD I have never had a reluctance to take Blood Thinners. Aldo like yourself I take Warfarin, been taking it for around 12yrs, ok sometimes the Diet restrictions are a nuisance, also if I need other medications for a short time it may temporarily alter my INR,but in my experience, It soon stabilises again, I have still got AF (off and on). Lots of my friends have changed to the new blood thinners, they say they are happy with them! I’m sticking to my Warfarin.

Milfordhaven profile image
Milfordhaven in reply to BobD

I totally agree with you BobD, I have been on Warfarin for 14 yrs, the only side effect I have had is, that I notice that my hair has definitely gone thinner, a small price to pay for protection. Warfarin suits me!

dmjtanner profile image
dmjtanner

I took a few still photos of the video but I can’t figure out to upload them here.

Omniscient1 profile image
Omniscient1 in reply to dmjtanner

Can you share the web page address?

dmjtanner profile image
dmjtanner in reply to Omniscient1

It was on the doctor’s Instagram page. You could look for him on Instagram under

“yourheartdoc”. You might have to scroll back a few posts.

Omniscient1 profile image
Omniscient1 in reply to dmjtanner

Thanks for the clue ;-) Here it is on YouTube (I don't do Instagram - yikes!)youtube.com/shorts/hTZC87lv...

dmjtanner profile image
dmjtanner in reply to Omniscient1

Oh good, you found it!! Thanks.

Bagrat profile image
Bagrat

I was overjoyed when after 2 yrs on aspirin, the consultant suggested I discuss anticoagulation with my GP. Both my adopted parents suffered several strokes each and it is not a route I would choose.My GP in the presence of a GP trainee reminded me of an MP that he and I remembered who dropped dead of cerebral bleed on steps of 10 Downing St. It did NOT put me off

DawnTX profile image
DawnTX in reply to Bagrat

I truly feel for you understanding the fear of stroke. No one likes medication or side effects of it but you have to choose your battles. I’d rather be bruised then have a blood clot hit me. Best of luck hon. I wrote earlier that my grandmother died of a heart attack in the hospital and at the same time pretty much my grandfather died of a stroke at home. That’s enough for me to keep trying and doing what they tell me to do

willec49 profile image
willec49

Thank you for sharing your experience with this topic. I hope you will decide on the best course of action going forward.

Morzine profile image
Morzine

I agree with bob my Apixaban is my best chum too……

MisterMagoo profile image
MisterMagoo

With PAF and a score of zero, I had a TIA (mini stroke) about a month after being told I didn't need anticoagulants. I had it whilst reading a thread on here somewhere about the issues of taking them and I was smuggly congratulating myself for not being on them and being able to carry on mountain biking with abandon. Shook me and scared the life out of Mrs Magoo. I'm now taking Edoxiban and carefully timing half doses around my biking days whilst carrying a professional first aid kit and wearing a medical band.

theohappy profile image
theohappy in reply to MisterMagoo

You are wise. I had a TIA, and 6 months later massive stroke. On aspirin only at the time due to cardiologist’s opinion.

MisterMagoo profile image
MisterMagoo in reply to theohappy

I'm so sorry to hear that. It's terrible that so many medics don't understand the need for anticoagulants in AF treatment. I was put on Aspirin by a junior doctor when I had the TIA in holiday but I was sent straight to the TIA clinic in Nottingham as soon as I got home and they put me on Edoxiban. They explained really well why the anticoagulant was what was needed and why Aspirin was basically useless for AF stroke risk. My cardiologist didn't put me on anything prior to my TIA and my GP had prescribed Aspirin, which I ignored. I hope that you are in good shape now.

willec49 profile image
willec49 in reply to MisterMagoo

Thank you for your reply. I'm glad you finally got things straightened out. Yes, I think I'm making progress and doing well so far. All the best.

Nigel2000 profile image
Nigel2000 in reply to MisterMagoo

I’ve not heard this about aspirin before.

Silvasava profile image
Silvasava

I had a stroke in December 2019, I was lucky and got to hospital within 3 hours and it was thrombolised with no after effects. Was put straight on Edoxaban while in hospital. Subsequent investigations discovered Afib and DCM. I was SO lucky, take a tablet or run the risk of a potentially devastating stroke? No option really, we're so lucky that these meds are available to us.

theohappy profile image
theohappy in reply to Silvasava

Agree!

willec49 profile image
willec49 in reply to Silvasava

Oh, I am so glad that you got to the hospital in time and are now on the appropriate regimen for you. All the best of health going forward!

TracyAdmin profile image
TracyAdminPartner

Regrettably, there is no cure for AF at this time, so it is important to manage and treat the symptoms - anticoagulants are prescribed to help lower your risk and protect you from experiencing an AF-related Stroke - a great reminder to everyone and thank you for sharing with the Members !

willec49 profile image
willec49 in reply to TracyAdmin

You are welcome and thank you for your contribution here. Yes, I guess it takes what it takes for all of us to become educated and find the best solution and treatment.

Jfbould1 profile image
Jfbould1

Well, a timely discussion as I’m having it just now w my cardiologist. My chads score is about 2, if you count my afib and mild arterial stenosis as heart disease. I am on propafenone daily, but still have 3-4 afib episodes a week, usually not longer than 4-6 hours and often a lot less. My cardiologist says if the episodes last less than 24 hours, a blood thinner isn’t indicated. I’m also reading that the risk of a stroke from a bleed is as much a worry as the risk of a clot. Rivaroxiban is what’s on offer. Maybe that’s not the case., but would love to hear from anyone who’s interested to offer their pov.

I’ll add that I’m considering trying the pill in pocket approach for the anticoagulant, based on the longevity of the afib bouts.

RoyMacDonald profile image
RoyMacDonald in reply to Jfbould1

My personal opinion is that it's better to die from a bleed than suffer any strokes. Stroke can happen at any time if you have AF. I had a stroke a couple of years ago and you never get over it, even if you make a good recovery. My father died slowly aged 78 from a bleed. His blood pressure was massive though. There's nothing they can do for a major bleed. Apixaban has a very low incidence of bleeds in studies.

All the best.

Roy

Jfbould1 profile image
Jfbould1 in reply to RoyMacDonald

Thanks for sharing, Roy.

theohappy profile image
theohappy in reply to Jfbould1

I agree with Roy, the odds of a bleed are low. I have no idea how the bleed odd compares to the stroke odds. But from one who has had a TIA and massive stroke off of OAC and was a Chad 2, I will always regret listening to my cardiologist who said I’d be fine on aspirin. An AFib stroke can happen at anytime regardless of PAF or persistent AFib. If you don’t tolerate OACs well or don’t want to take them then consider one of the means for closing off the LAA where 90% of blood clots form. I’m going to do a Watchman.

Jfbould1 profile image
Jfbould1 in reply to theohappy

Thanks for sharing your thoughts, Theohappy

theohappy profile image
theohappy in reply to Jfbould1

You’re welcome! The best to you in whatever decision you make!

DawnTX profile image
DawnTX in reply to theohappy

I will never understand doctors not taking advantage of the new blood thinners knowing we have heart issues. I always thought they asked for an approach was for those who did not know it was just a little bit of protection just in case. As soon as my a fib was detected I was put on Xarelto. Bruising is a pain in the neck or wherever the bruise is lol but I would rather have that than the alternatives such as you have suffered. My a fib was nowhere near as bad as it is now although I will tell you today was a good day. The first since surgery. Theo you are another inspiration out here just so you know so please keep writing.

theohappy profile image
theohappy in reply to DawnTX

Thank you for the kind words, Dawn, and encouragement. It's been a very rough road so far, but I'm not giving up! My AFib progressed just recently into persistent AFib with some A-Flutter. When I crossed over my strength nose-dived. I am very weak. I can hardly wait for an ablation! My EP, in Austin, TX, said based upon my echocardiogram that I stand an excellent chance of success with the ablation. Hope so!

willec49 profile image
willec49 in reply to theohappy

I'm sorry to hear about your Afib. I hope you are able to get an Ablation soon and that it works 100% Good luck!

theohappy profile image
theohappy in reply to willec49

Thank you!

willec49 profile image
willec49 in reply to Jfbould1

Thank you for sharing your experience. The reason my Cardiologist had me on aspirin and not blood thinners for two or three years is the same as yours...my episodes were infrequent and short. Even so, when I was scheduled for the Ablation several months out, the EP insisted I start on the blood thinner immediately.

Jfbould1 profile image
Jfbould1 in reply to willec49

Thank you willec49. The better safe than sorry approach seems to be the consensus.

frazeej profile image
frazeej

When, following diagnosis of afib, my cardioguy wanted me to stop aspirin and start Xarelto, I was very resistant-being misled by many anecdotal tales of side effects, bleeds, etc. The good doctor explained to me the stroke risk, and said an afib promoted stroke is usually a big one. Then the clincher........"Most people that don't die from the stroke wish they had." Been happily on Xarelto ever since, with no side effects.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to frazeej

HiThat's not true re massive heart stroke.

Mine in Sept 2019 was due to AF but due to undiagnosed Thyroid Cancer.

A left frontal lobe clot the DHB thought it was at the backj of my head.

I went back to sleep hsaving been woken by a SORE HEAD!

I awoke 4 hours later and looked in mirror.

Rihjt side dropped face, cudnt swallow or drink or eat. Cudnt be understood by St John staffwhere I lived.

Didnt get to toiket in time. Ran a shower and right hand dropsy was my middle name.

Not a massive stroke.

Samg in the xmas carol Choir 2 weeks prior to Xmas.

Thyroid Cancer removed with 2 x yearly neck scans.

Started to knit this week. Writing steadily improved over time as did speech.

cheri. JOY

theohappy profile image
theohappy in reply to frazeej

Mine was massive! Fortunately I got to the hospital in time for miracle clot busting drug, so the damage is minimal but there. The really scary part was being in the shower my leg gave out and I slipped and cracked my head open. Lying there helpless on the shower floor, bleeding to death waiting and praying my husband would eventually find me. Which he did about 45 minutes later. That’s the part of a stroke a lot of people don’t think about. Where will you be when it happens and who will be around when it does! My husband wasn’t supposed to be home that morning. If he had not been there I would have either died or missed the 4 hour stroke window for getting the clot busting drug. Doctor said without that drug I would have spent the rest of my days in a nursing home.

willec49 profile image
willec49 in reply to theohappy

Wow! You went through quite a traumatic experience but I am glad you came out with the best possible results. All the best of health to you.

theohappy profile image
theohappy in reply to willec49

Thank you!

DawnTX profile image
DawnTX in reply to theohappy

You were meant to stay with us. I think I told you my first a fib serious event I was home alone because I was living alone. I had gotten up to go to the bathroom and the next thing I know my face was cold. I realized I was facedown on my concrete floor and had no idea why or remember falling. Somehow I managed to get to my bed so I thought and all I wanted to do was go to sleep. I thought I was sleeping but when I woke up I realized I was now in my bathroom on my back and had just missed the toilet and tub with my head. Again I managed to move, this time actually getting to the bed. I did go to sleep and did not even call my doctor for two days I saw him on the third day. That was the beginning of my afib life. I am thankful I got to continue the journey even with afib because you all have made me realize how it could have been.

theohappy profile image
theohappy in reply to DawnTX

Sorry, Dawn, almost missed seeing this. Wow! Your AFib incident must have been really scary! It actually sounds as though you had a TIA. Did your doctor ever suggest that to be the case? I had a TIA prior to my stroke, but didn't realize it was a TIA until I had my stroke with similar symptoms. So where are you at now with your AFib? Did your surgery, ablation, I assume go well? In NSR? On any meds now other than Xarelto?

DawnTX profile image
DawnTX in reply to theohappy

Because of my fall or I should say falls they were very into the neurology part even before heart. I was very lucky and had no issues even with both balls banging front and back of my head. No nothing was ever mentioned about TIA. My first visit they put me on several meds I don’t remember which ones because as you know it can be trial and error. They finally decided to implant a loop recorder. Within two weeks they had the afib answer and I was scheduled almost immediately for an ablation. From my first visit I was put on Xarelto also it may have been Multaq even then and Metropolol It seems like much longer than two years that I have been dealing with this having first the cryo- and then the RF with about a six month break from afib then about 15 months. In Oct I sold my condo and got ready to move to Texas. I was able to pack my car and do many things although I did have some a fib it was not all that bad. When I got to Texas I was able to unload my car etc. again not that bad I was still able to walk my dog who can be a handful at 65 pounds. I keep trying to remember when it got so bad and I’m beginning to think when Covid hit me and I may have had it a little bit longer than I thought. I also took three bad falls. The first one I fell over my dog outside in the parking lot. Diggy likes to roll on the ground and he rolled straight across in front of me as I was walking without any heads up that he was going to do this so I went facedown. The second time was frightening because I don’t know why I went down and that was in the hotel hallway but I did manage to get up thanks to my dog who somehow manages to support me. I also took a third fall about a month ago. I seem to have no flexibility in my lower legs to balance myself and dreadful pain from my hips down especially in the thigh area. The pain brings tears and along with this I have the crushing chest pain still It has been three weeks since my procedures on the vein of Marshall and whatever else was done. I will find out more later. I have been reading quite a bit on Valderrabano ’s procedure and his writings. Before three months they don’t consider it a failure and 6 to 12 months there’s a possibility of being a fib free. I believe it was a dual. I did not realize how medicated I was so he will need to repeat what he has told me because I’m no longer sure what I heard lol. This is not a quickie procedure. Both my ablation I felt better within the next day or so. Evidently that’s not how this one works it’s for the long-haul. Today I wanted to scream or cry not sure what. Unfortunately I am medicated enough that I can’t do either it’s just not possible. I had just moved into a new home with my cousin who is acting is my caregiver thankfully because I have no one else. I want to be able to help and do things and have even considered a wheelchair not being able to stand on my feet or walk more than a few feet. He is talking of retrofitting the garage as a home for me and I have actually begun to think about from a disabled point of you because when you have to sit to do anything you realize normal does not work for you. From the sink to the oven etc. you are at a disadvantage. Just going from the chair to my bed leaves me breathless so no things are not going great since my surgery three weeks ago. I am not sure what miracle I had on Tuesday that I got up and realized I had walked to the kitchen and gotten some thing I’m back to bed and was feeling good. Maybe this is a lesson to me although I thought I always did appreciate being able to do things. I am going to be 70 in August but never felt 70 I always say I’m 35 in my head and could move and do things maybe not quite that young but not that old either . I’m not having a pity party for myself but I am very upset to have suddenly lost all of that and the independence and happiness that goes with it. This is why you are one of my heroes I love the way you write and you seem so upbeat though I’m pretty sure you understand what I’m talking about. Quality of life is so important to me. I don’t need to play the piano or join Cirque du Soleil because I could never play the piano or do acrobatics. I just want energy again and to be able to hop in the car and go to an errand and clean the floor or unpack a box without feeling the weight in my chest and down my arms and the pain in my legs. I never thought being able to clean the floor it would be so exciting. Thank you for being here Theo happy

theohappy profile image
theohappy in reply to DawnTX

Hi Dawn, Your surgery sounds as though it was complicated. Did you have the weakness, lack of flexibility, and pain prior to the 2nd ablation? Or is all of that new? I'm so, so sorry for your suffering. Suffering takes so much life out of us. Were it not for my faith in God, it would be hard to keep going after the year I've had. Not to mention other very tough times throughout my life. I don't remember who did your second ablation? Did you ever say? I will definitely keep you in my prayers. My ablation and Watchman surgery got bumped up to this coming Tuesday. Excited. Trying not to be nervous. I'm glad I am doing an RF ablation. I think they are more successful overall cause they can get to more places in the heart. Bye for now, Theohappy

mjames1 profile image
mjames1

The governor also looks 30-40 pounds overweight, another independent risk factor for stroke.

Certainly not against thinners, been on them myself, but it's not a one size fits all, even if you have afib.

Jim

willec49 profile image
willec49 in reply to mjames1

Yes, you are correct about that. He is quite a big man and overweight. I hope he is able to forge ahead and possibly enact some lifestyle changes.

Nigel2000 profile image
Nigel2000 in reply to mjames1

Let’s remember that afib can make it really hard to exercise, just a smidgeon of fat-shaming here.

mjames1 profile image
mjames1 in reply to Nigel2000

Apologies if you read my post that way, but not everyone is aware that being overweight is a significant afib risk factor and in this case an independent risk factor for stroke.

Is it "smoke shaming" to mention smoking is an afib and stroke risk, or point out that a public figure who got a stroke is a smoker?

And yes, afib can sometimes make it more difficult to exercise but studies show diet is even more important in losing weight. And I understand that is not always easy for many reasons.

Jim

Nigel2000 profile image
Nigel2000 in reply to mjames1

Wow! I did not know that. Would love to see a reference. If you began with “Not everyone is aware …,” rather than a snarked anti-apology, you’d come off as more helpful and less sanctimonious.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

HIYes I had a stroke because of undiagnosed AFib due to undiagnosed Thyroid Cancer.

Cancer removed in Feb 2020 the A Fib has not returned to normal heart rate

but

CONTROLLED on CCB Diltiazem 120mg am and 2.5mg Bisoprolol at pm.

Good news my Dr says no irregularity in heart beats so asked DHB (NZ) to do tests ECHO and an ECG with treadmill attached to treadmill.

It was either the new CCB introduced in Dec 21 or all the inflammation around my 2003 Johnson & Johnson TVT Surgical Mesh REMOVED March 22.

I have my fingers crossed.

Had rapid persistent AF from date of STROKE Sept 2019.

cheri JOY

Stopping the PRADAXA would be great.

Nigel2000 profile image
Nigel2000

Thank you! I wish I had insisted that I get on a serious bloodthinners despite my CHAD score of 1. Father had strokes, mother died of massive heart-attack, my afib had been getting more frequent and debilitating, YET none of this was significant until I had a stroke. Luckily, the ambulance got me to the hospital in time to get “clot- buster” drug or I wouldn’t be typing this with both hands right now!

Gumbie_Cat profile image
Gumbie_Cat

I was recently diagnosed, at 67, and my score is only two due to being female. Being the ‘baby of the family’ by ten years has given me some good warnings. Both of my sisters had strokes due to AF, one at 64 and the other at 65. So it has been on my radar for some time.Three years ago I had a retinal vein occlusion, so of course that set off tests which were all fine.

So, when apixaban was suggested in January, I jumped at the chance.

One of my older sisters passed away last year, following another massive stroke which they didn’t catch in time. She had a bad year with falls, and I think might have stopped the anticoagulant following a micro-bleed. Then I lost the other sister to a brain tumour early this year. Luckily the eldest, my brother, is still going strong!

It could be that the stress has not been good for my AF either, but have also discovered that a few of my cousins have it.

So, it’s a definite yes to anticoagulants for me!

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