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Atrial Fibrillation Support

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Cos56 profile image
63 Replies

Hi

I’m a 65 year old woman. A nurse. First episode of paroxysmal atrial fibrillation was 2015. Started metoprolol 25 mg but after some heart pounders over the years added 12.5 at night. Had an episode of A Fib in September 5 and then November 9. Both times i went the ER, afraid of developing a clot. Now electrophysiologist started Eliquis which terrified me. I hate pills. I’m trying so hard to see it as “protecting” me but it scares me. What else is it doing to me?

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Cos56
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63 Replies
BobD profile image
BobDVolunteer

As a nurse you should understand just how important anticoagulation is when you have AF Your risk of stroke rises by five times with AF yet the anticoagulant reduces this by 70% or more so should be your best freind.

Warfarin which used to be the only anticoagulant was first generally used in I think 1948 and these new drugs for the last ten years or so . I think people would know if there was anything bad happening. It is of course important to take them correctly according the guidelines.

Cos56 profile image
Cos56 in reply to BobD

I do know, I’m just having a hard time accepting it. And I’m afraid of getting hurt lolBeing so dependent on a med is unnerving.

CDreamer profile image
CDreamer in reply to Cos56

I think many of us can resonate with that feeling. I was 62 when advised to take A/Cs, having had AF for about 5 years then. I came off them 12 months after no AF following ablation and then had a TIA so couldn’t get back on them quickly enough. I have been taking A/Cs continuously ever since.

I take Apixaban (Eliquis) and not had any problems or affects that I could attribute to the meds and now I have accepted that they reduce my stroke risk and have that experience I am more than happy to take them.

Cos56 profile image
Cos56 in reply to CDreamer

Wow, what an awful experience you must have had. Thank you for sharing that. I guess I just have to get over myself.

Adalaide2020 profile image
Adalaide2020 in reply to Cos56

I think it's only natural to be spooked at times. I'm a year older than you. I have been on Apixaban for a long time (cant honestly remember) . I get approximately 2 episodes a week lasting 24 -36 hours. I have had 3 ablations and heading for a 4th. I have had Afib since before 2000, had first ablation 2011...I think. Why do I say all this? Well because in the early days I got spooked big time. The fear of having a stroke was a big one and being on Apixaban is a big comfort. I live each day as it comes , my Afib is a pain but when I'm in sinus I feel great and when I'm not I have my meds to help . I hate tablets too but Apixaban I consider to be an friend of sorts, a necessity if you like but one that doesn't give me any problems. I have had other procedures and yes I have had an occasion when a wound took a bit longer to heal but nothing onerous. I stop taking my meds 48 hours before a procedure generally and I trust my cardiologist to give me the correct advice. I dont want to undermine your anxiety but I do want to assure you that for me, and for many others, Apixaban is one of the best anticoagulants available. I have gone on a bit but I want you to feel safe and confident in your decision to take the meds your EP has prescribed. I wish you well.

lovetogarden profile image
lovetogarden in reply to CDreamer

Cdreamer - Wow, what very similar experiences we've had.

Cos56 - I too hated the idea of taking them. Had to get used to the idea that they were helping, not harming. Haven't had any side effects from them, so I've started seeing them as a good thing. You'll likely get used to the idea too.

wilsond profile image
wilsond in reply to Cos56

Anti coagulation dies not make you bleed more,it just slows down the process of clotting. So if you cut yourself it takes longer to stop,but it's easy to sort out with pressure and elevation if possible.People have operations,teeth out ( like me) with no problems.

I was anxious about NOT being on them after seeing my mother ( not treated with AC) die from an AF stroke. Also my grandma the same way. Strong family history of strokes on both sides I thought would put me on AC straight away but no!

I am very glad to be now but as I was quite young (53) I was deemed to be low risk according to the CHAD chart. It was only when I had a TIA that I was put straight on.

Have had several mishaps I'm my allotment with sharp tools! But no problems stopping bleeding.

Try not to worry,we are the lucky ones who have SF and are ACd,as others have said you can't reverse a stroke and AF strokes are the most dangerous.

I think we all have those times where we mourn the person we were pre AF but remember it's not a killer per SE,it's the bedfellows it keeps.

Many people say that when AF is diagnosed that they took a good look at themselves and sorted out bad habits and diet and actually feel they are healthier in many ways!

Keep your chin up and take the tablets 👍👍😘

Cos56 profile image
Cos56 in reply to wilsond

You brought tears to my eyes. You are right, I feel so stupid. I was quite possibly saved from a most unfortunate future. Thank you from my wonderful beating heart lol

wilsond profile image
wilsond in reply to Cos56

Hey hey please don't feel silly . AF is such a confusing condition to have .Keep calm and carry on as they say!

From a fellow member of the Crazy Heart Club, take care of yourself xxx

betsea profile image
betsea

According to Dr Sanjay Gupta strokes never occur while in Afib. Look him up he has lots of good videos. The cardiologist not the one you see on CNN ask the time.

Goosebumps profile image
Goosebumps in reply to betsea

Wow that is an astounding statement that I have never heard before. I will check Dr Gupta’s site, I know which one you mean, he is much respected so the statement would carry a lot of weight.The simpleton in me says that if this is fact, those of us that are in permanent AF or persistent AF (like me) could stop taking anticoagulants.

CDreamer profile image
CDreamer in reply to Goosebumps

The risk remains after AF which is why I now continue to take A/Cs although now have hardly any AF.

I had NO AF episodes that I was aware of - for 12 months and yet still had a TIA. The stroke risk remains & I was told that it’s probably in the 3-4 week period following an AF in which you are at highest risk.

I later learned that there is a statistical link that shows stopping A/Ca can also increase your stroke risk.

Dr Gupta does a lot of speculation but the reality is it’s still not proven why arrhythmias cause stroke risk to increase SO much.

CDreamer profile image
CDreamer in reply to CDreamer

PS - I scored 1 at the time for being female on CHADSVASC

Cos56 profile image
Cos56 in reply to CDreamer

And my electrophysiologist told me I am now a 2. 😮

Cos56 profile image
Cos56 in reply to CDreamer

Thank you for your support

BobD profile image
BobDVolunteer in reply to betsea

The problem with that statement is that it does not explain the countless poor individuals left in almost vegetative state by a crippling stroke who never knew they had AF until too late. Regular screening for AF could stop 8000 strokes a year here in UK alone.

in reply to betsea

Saying things out of context can be misleading and dangerous……..

youtu.be/LERfUhYIXZM

Cos56 profile image
Cos56 in reply to betsea

I will research more. Thank you❤️

wilsond profile image
wilsond in reply to betsea

What! Strokes follow on from AFib episodes when blood doesn't get pumped out properly. I've seen Dr Gs videos but I think you may have interpreted them mistakenly.AFib certainly does cause strokes and it would be very foolish to not take anticoagulation.

I had a TIA just after an episode and had to have big dose of strong aspirin in the hospital they took me to followed by immediate AC.

Please be careful

Polski profile image
Polski in reply to betsea

To clarify: a clot can form while you are in AF, but it is normally days or weeks later that it moves and causes a stroke. Hence the need to take the anticoagulants all the time.

DLS25 profile image
DLS25

I am 49 and just been prescribed edoxaban. I am feeling the same as you. I have had two episodes of AFib and really struggling to get my head around it. So understand

Bonnie58 profile image
Bonnie58

Hi there, I fully understand. I am 63, also a former nurse. I began Afib 5yrs ago, developed into Tachy/brady syndrome. Have had cardioversion and now have a pacemaker and take Apixaban and Verapamil.It is a help and a hindrance having a medical background and feels a bit scary to be on the other side of the fence but in time you will get your head around it all. You are allowed to be nervous, nurses are human too! All the best to you. Elaine.

captainKFF profile image
captainKFF in reply to Bonnie58

Hi, can you please share what is the role of the pacemaker in Tachy Brady syndrome? And whether you are back in sinus rythm?

Bonnie58 profile image
Bonnie58 in reply to captainKFF

Hi there Captain.I had a cardioversion in March 2020 for Afib which was successful. Was in mainly sinus rhythm with some brady episodes until September 2020 when brady rate went steadily down and became permanent and 35ish quite suddenly. Had pacemaker beg Oct, so that has sorted brady, set to pace if hr below 60. Then in Feb 2021 Afib returned, very limited capacity for exercise, breathless etc. Switched from Bisoprolol to Verapamil with much better results, resumed my gardening work, then 2wks ago Afib back. Hoping Gp will increase Verapamil. I feel it is all a balancing act tbh. Elaine.

Cos56 profile image
Cos56 in reply to Bonnie58

The nurse in you never leaves😊 I work in a post-acute rehab/long term care setting and many are on a/c therapy and I see many strokes! I have to accept this med will help protect me from that fate. You are right…it’s tough being on the other side of the fence when I’ve always been healthy and remain health conscious. Thank you for your kind words.

Cat04 profile image
Cat04 in reply to Cos56

Medical training never leaves you......I still tie my tomatoes to their canes using surgical sutures knots! 🤣

Cos56 profile image
Cos56 in reply to Cat04

Me, too!!!! So funny 😆

lovetogarden profile image
lovetogarden in reply to Cat04

Now that's something I'd like to know how to do! My tomatoes are always flopping all over the place..😂

Cat04 profile image
Cat04 in reply to lovetogarden

Up the canes to the top of the greenhouse then tuck the stems behind horizontal wires across (end to end) the roof of the greenhouse.

Ppiman profile image
Ppiman

I haven't noticed any difference at all since starting rivaroxaban in June 2019: no side effects, no bruising, nothing. I was told that the chances of a clot are vastly greater than the likelihood of a bleed. I don't even bruise badly or bleed excessively since starting it, say after a covid or flu jab.

I did see a urologist in the week who sighed a bit when he knew I was on a DOAC as I suppose they cause him more difficulties while performing TURP surgery for my BPH in the future; but he said it would be fine if that ever did become needed.

Steve

Cos56 profile image
Cos56 in reply to Ppiman

So good to hear. 😊

Hello Cos and welcome to the forum, being a nurse, you should have an advantage over most of us who are not medically trained. We have to assume that the medical professionals who specialise in treating the heart generally and more specifically AF, know what they are talking about when they say that anyone diagnosed with AF is 5 times more likely to have a stroke. From what we hear, the vast majority say that this risk remains regardless of any treatment which controls the symptoms associated with AF. Most of us therefore, are relieved to know that medication is available which significantly reduces that risk, even though we are aware that the medications used also have risks.

I guess the difficulty for some is to weigh up which risk is more likely to occur, a life changing stroke or a severe internal bleed and whilst there are ways of assessing those risks, we are told that all the evidence suggests that for the vast majority, the risk of stroke is significantly higher than having an internal bleed.

Most of us who take an anticoagulant, especially a DOAC which does not rely on INR, know that there is really very little difference when it comes to dealing with normal cuts and scrapes. However, those who work in dangerous environments or pursue high risk activities may have more challenging decisions to take.

Only the individual concerned can make the decision and although it can be difficult, being a nurse and probably being only too aware of what the effects of a life changing stroke stroke may be, hopefully you will decide to follow the advice of your medics.

Cos56 profile image
Cos56 in reply to

Absolutely! When the MD said this was recommended by him, I said “that’s why I’m here. For your recommendation. Tell me what’s the best course of action.” As much as I didn’t want to hear it, I knew what he was going to say. I actually said “Eliquis” before he did. He mentioned rhythm meds but said he didn’t want to go there. I have seen lives destroyed by strokes…not only the victim but their loved ones as well. Your support has meant so much. Sometimes you need someone to open your eyes when you’re afraid to look. This site is amazing and all who replied have helped me put that pill in my mouth, and may have saved me from a fate unknown.God bless!❤️

in reply to Cos56

Be well, and I am sure you already know this but should you need any surgery, even dental work, keep them in the loop about the new med. Thanks for all you do for others and take care!

P.s. on eliquis since 2019 at 49 y.o. afib induced by thyroid storm after 24 years of under active thyroid. 1 cardioversion lasted a year. Need another at the moment. 1 problem only & its at that "time" of the month which I won't go into. Otherwise, eliquis is fine for me & it has a "reversal" drug should it ever be needed. Be well~

Cos56 profile image
Cos56 in reply to

Thank you❤️You, too!

dedeottie profile image
dedeottie

Please don’t worry. I do understand as I was a nervous wreck when zi started on warfarin. I am now on apixaban. I have taken anticoagulants for 10 years now and see them as my greatest friend. Pre diagnosis I had 3 very scarey TIA s and although I was only in my 50s I scored enough on the scale because of these to warrant anticoagulants. Trust me, the alternative is much much more scary than taking apixaban. X

Cos56 profile image
Cos56 in reply to dedeottie

Thank you so much for your encouragement

Cat04 profile image
Cat04

I'm sure as a medical professional you would encourage your patients to take their prescribed medication. Do you trust your EP's training & knowledge or not? As CDreamer and BobD say above - take your medicine or run the much increased risk of having a stroke. Your choice.

Cos56 profile image
Cos56 in reply to Cat04

Of course I would😔 you are so right and thank you !

beach_bum profile image
beach_bum

I have had no issues with anticoagulants...Xeralto. No bruising, excess or prolonged bleeding, and I am very active, play with chainsaws etc. I have had a couple of minor accidents which bled, but no more than without them, so...that is my experience. My sister-in-law, also a nurse...albiet a cardio specialist for 35 years, told me "you best be on AC meds for afib" ...so don't be afraid 🙂

The prospect of a stroke should terrify you...it does me.

It sounds like someone did not explain the mechanics of the heart, and how afib can easily create conditions for formation of clots.

Maybe a chat with a specialist might assuage your fears.

Cos56 profile image
Cos56 in reply to beach_bum

Listening to all of you is better than anything! Thank you and you all are so right. Fear got a hold of me. Thank you

in reply to beach_bum

Play w/chainsaws...lol be well.

Vrouse profile image
Vrouse

I was prescribed Apixaban after I had a stroke caused by AF. Never had a problem with them and just greatful the risk of another stroke is reduced.

Cos56 profile image
Cos56 in reply to Vrouse

God bless.Thank you

Apixaban (Elequis) has been through the same rigorous processes as all prescription drugs and has been in use for long enough now to have given signs of any potential unintended dangerous side effects. Most people are quite rightly a bit nervous around anti-coagulation but I'd advise learning to be more accepting of it and live with it, because stroke is horrible, as you will probably have observed as a nurse I'm sure. It's not just the possibility of dying, it's the way in which a severe stroke can leave you dreadfully incapacitated and living a half life, relying on others to help take care of your basic needs. You can lose your ability to earn a living with devastating long term effects on things like loss of pensions too. I'd say, particularly with your professional background, which is rooted in the scientific, that you try to place more faith in those medications which will most likely protect you from severe bodily damage in the shorter term, rather than fear those born of a nebulous fearof the unknown.

Cos56 profile image
Cos56 in reply to

You are sooooo right. It can destroy my life. Listening to all of you has changed and calmed my fears. I can’t thank you enough😊

Snowgirl65 profile image
Snowgirl65

My only problem with anticoagulants (Xarelto in my case) is that I bleed easier.

Chrissy7 profile image
Chrissy7

I have paroxysmal Afib since 2015 as week but occurs only about once/year …and none of my doctors think I need an anticoagulant because I have Chad score of 1. When I have another episode they may consider it.. I take daily baby aspirin but sixties say it only helps a little.

Cos56 profile image
Cos56 in reply to Chrissy7

The MD said I WAS a 1 but being a woman and turning 65 put me up a notch.

secondtry profile image
secondtry in reply to Cos56

I believe there are some European guidelines which suggest CHADS 2 is still borderline for starting anti-coags, sorry don't have the link.

Finvola profile image
Finvola

Welcome Cos to the forum. I went through the same fears as you 8 years ago when I started Apixaban (Eliquis). At that time my score was 2 and, frankly, the thought of a stroke caused me more anxiety than losing my drug-free life.

As others have said, anticoagulants merely slow the clotting process enough to discourage clots. It does mean cuts take a little longer to stop seeping but in the time I've taken Apixaban, I've had massive nosebleeds from an allergy, 2 large teeth extracted and numerous cuts and scrapes - and I'm still here and upright!

I think that once you get used to the little pink tab twice a day, it does become part of your life. Best wishes with it.

Cos56 profile image
Cos56 in reply to Finvola

LolGlad to know you’re still kicking!!!

Cos56 profile image
Cos56 in reply to Finvola

I also heard there’s an AF diet I’m looking at these days. Pretty much the way I eat BUT I will really really miss an occasional glass of wine🙁but will do whatever I have to.

Finvola profile image
Finvola in reply to Cos56

Yes, there are certain obvious things to avoid such as artificial sweeteners, colourings and flavourings - most diets promote mainly plant-based foods which is what I have modified to suit me. Unfortunately, my love affair with wine had to end 8 years ago but, like you, I felt 'needs must'.

Bagrat profile image
Bagrat

Welcome from yet another nurse (17 yrs retired) First episode afib 2011. Didn't get anticoagulants till 2013 as had only had 2 episodes controlled by flecainide then guidlines changed. Swapped to apixaban 2016 from warfarin. Do feel being nurse a two edged sword though.Have a degree of health anxiety and phenomenal white coat syndrome for B/P 120 /70 to 200 systolic!!!

I am so pleased to be on anticoagulants and flecainide has been a great success - started 2011.

It was reduced by GP when I was having runs of tachy, now 5 years later re referral to cardiologist for same thing and it's been increased!!

It is a great help to be able to offload on here.

Cos56 profile image
Cos56

It really helps talking with others who are going through it and have questions. Good luck to you

sarniacherie profile image
sarniacherie

It is stopping you having a stroke, that's what! None of us want to be rattling with medication but there are times when we have to weigh up the pros and cons and where anti-coagulants are concerned they are a necessary evil. As a nurse I assume you have seen stroke victims. So which would you rather have, that or a pill to protect you. It's a no-brainer for me.

Cos56 profile image
Cos56 in reply to sarniacherie

You’re right! I am adjusting thanks to you and all who are so supportive.

sarniacherie profile image
sarniacherie in reply to Cos56

I am relieved you are coming to terms with it. This is an excellent forum and there are some very good short You Tube videos from a cardiologist called Sanjay Gupta who covers all aspects concerning our dodgy tickers. Keep safe and well and a pat on the back for nursing through such difficult times. X.

Cos56 profile image
Cos56 in reply to sarniacherie

😀

EngMac profile image
EngMac

You may wish to look at this link. Maybe as a health care practitioner, you already access this site. If not, register and log in. It is free. medscape.org/viewarticle/95.... Recommended doses of AC for women are different than for men. All doctors may not know this.

paulypurplepants profile image
paulypurplepants

I have read all of the replies and thought I'd add what my Cardiologist had explained to me before my Cardioversion 3 weeks ago. He said that there is a small pocket on the side of the heart that blood moves in and out of it, in normal rhythm, but in AF, it is unable to clear it properly. Therefore this blood can coagulate in situ. Once the heart is reset, that coagulated blood can then be pumped out of the pocket and give the potential for a Stroke. So they put me on apixaban for 30 days before and 30 days after the CV. I'm thinking and hoping that when I go back to see him a month after the CV, that I'll come off them......on the basis that everything is working normally.

Cos56 profile image
Cos56 in reply to paulypurplepants

Thank you for your addition. Makes sense🤔

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