Pacemaker and now afib! please help:(

Hi everyone,

This is my first post on the site which by the way is amazing!!

Some background on my situation:
I am female and 38 yrs old.
I was diagnosis with 3rd degree heart block last November and had a Medtronic 2 lead pacemaker fitted on Nov 21st 2015.
I take no medication.

On my last check up 2 days ago and I was told I had 39 afib episodes, which has jumped up as on my check up in April I only had 2!!
Now I have read peoples posts where they have had 100's or even 1000's of afib episodes so maybes I am worrying for nothing?
The pacemaker technician told me the risks associated with having afib episodes but she said I was classed as low risk due to my age, not having diabetes and never having a stroke ect.

The technician wrote me a letter for my GP and to make an appointment to see my GP to make a plan the next day which I did!
My GP looked at the letter and can't decide if I should go on blood thinners or to put me on aspirin?
My GP wanted to speak to my cardiologist before she makes a decision and she would call me - so far no phone call.

So my question is as I am classed as low risk should I be ok on aspirin or should I try and push for blood thinners?

Is anyone else on aspirin rather than blood thinners?


Thanks so much,
Kelly.

16 Comments

Baby Aspirin

by Artist - 2015-12-12 08:12:27

I take one 81mg baby aspirin daily and it is very effective in thinning my blood and lowering my risk of having a stroke. My blood is periodically checked to confirm that in my case the aspirin is producijg the desired effect. We are all different, but your doctor should order a blood test to evaulate your situation. I would opt to try aspirin first and see if it is effective for you. I know that some PM club members have had side effecfs from taking such medications as Warfarin
(rat poison). Like most medications, there is often a trial and error process to find what works best for you with the least side effecs. I am thankful that coated baby aspirin works for me with no side effects.

Good news is

by Theknotguy - 2015-12-12 09:12:41

The good news is.... you're low risk for stroke.

I have a history for afib, so have been on a lot of stuff.

Afib can cause a stroke because the blood can pool in the heart and clot. Then when you go back to a regular heart beat it can pump out the clot. The clot can cause a stroke, heart attack, end up in the lung, end up in the leg. All sorts of bad stuff.

Depending upon body chemistry, some people can tolerate Warfarin better than others. I couldn't. I also had a doctor who was more interested in looking at charts than watching what happened to me. I'd start to bleed internally, my haemoglobin level would drop to 7 (normal is 14), and I'd end up in the hospital. Sometimes the drop in haemoglobin would put me into afib to boot.

While in the hospital I'd get a transfusion, then get an endoscopy and a colonoscopy. The first would bring my haemoglobin up to normal levels, the other two would find out where I was bleeding. In addition to the internal bleeding, if I'd get a nick, it would start bleeding, and wouldn't stop. I'd put on a band aid. When I'd peel off the band aid I'd have two more spots that would start bleeding because of the adhesive. Now I'd have two new bleeding spots that needed two new band aids. I think you can see the progression from there. I think you've got a good idea why I call Warfarin rat poison. (It's used for that too.) One good thing, Warfarin is inexpensive.

After going though the above escapades,, I got a new cardiologist. Had a short and to the point discussion about Warfarin. He agreed to let me go on aspirin. The bad news is that aspirin is only about 30% as effective as other blood thinners. But since I'd had so many afib sessions and had survived without any problems my cardiologist felt I was a good candidate for aspirin.

I was on aspirin (over a year) until I collapsed on the trail while walking the dogs. When I woke up in the hospital they had switched me to Apixiban (Eliquis). I haven't had any side effects from Apixiban except for a bleeding when cut. Also don't have the skin problems I had with Warfarin. Needless to say, I encourage using Apixiban.

Please don't take afib lightly. It's a serious condition. I'd check with your EP/Cardiologist to see if they can offer any suggestions to limit afib. Probably not, but it's worth asking. Others on this forum have suggested magnesium supplements, but you have to be careful taking them. The supplements can interfere with other medications. (I'm taking the supplements but they haven't given me the glowing results others claim.)

I also hope your heart will settle down and the afib sessions will go away. Then you can go with the "pill-in-the-pocket" route. That's where you don't need to take a medication but carry medication in case you go into afib.

Sounds like you'll make an informed decision. I hope for the best for you.

Aspirin resistance

by IAN MC - 2015-12-12 09:12:59

Artist makes some interesting points.

Around 60 million people take low-dose aspirin every day in the hope that it reduces platelet production which in turn prevents clots from forming.

It has been found relatively recently that anything up to 1 in every 4 people are " resistant" to aspirin so around 15 million people are swallowing aspirins every morning and it is doing nothing for them.

A Platelet function test, which is presumably what Artist had, will find out whether you are aspirin-resistant or not but these tests are not yet commonly offered to patients.

Calling them "blood thinners " is interestingly a misnomer ; they don't thin the blood at all , but they are anti-coagulants and help prevent clot formation.

Kelly , as you know a fib episodes increase the risk of you having a stroke, anticoagulants reduce this risk but increase the chances of you having a bleed, some anticoagulants increase the risk more than others .

If you are an aspirin " non-responder" there is evidence that genetically you are more likely to have a stroke.

I wouldn't even attempt to advise you other than suggest you ask your doctor . But only ask a doctor who fully understands the risk / benefit equation

Best of luck

Ian.

Anti-Platelet vs Anti_Coagulants

by BillH - 2015-12-12 10:12:05

There are two different ways that the blood clots.

One is with a "scab" sealing over a wound. That is controlled by platelets. That kind of clog is what happens when plaque in an artery ruptures and causes a heart attack. Anti-platelet meds are useful in help control that. Aspirin is one mild form.

Coagulation is what happens when blood is stationary. In AFIB the atrial is not fully compressing, but rather quivering so that there are pockets of stationary blood that can form clots.

An Anti-Coagulant is used to reduce that probability. Aspirin is not a good anti-coagulant and many doctors no longer suggest it for that use.

A-Fib

by Roys - 2015-12-12 10:12:08

Hi
If you are having episodes of A-Fib you should see a EP not a Cardio. Google a-fib.com by Steve Ryan, that website has all the info you need. There are lots of things you can try.
Cheers Roy

At your age - 1837

by BillH - 2015-12-12 10:12:25

You are VERY HIGH RISK. However, I realize that is not your right age. But there are a number of factors that are used to compute stroke risk factors.

The most common scale is called CHA2DS2–VASc score.

https://en.wikipedia.org/wiki/CHA2DS2%E2%80%93VASc_score

However, there is another issue. It is based on the length of the episodes of AFIB. There have been several study on the risk factor in Device Detected AFIB. Off hand I don't know what the numbers are.

Ian, I agree w/ you - BUT...

by donr - 2015-12-13 01:12:59

... Both conclusions can be correct! They must be placed in proper context.

Consider the Universe of people w/ A-Fib (That's statistician-speak for all of them.)

That universe splits itself into two sets - those who COULD be helped by anti-coagulants & those for whom anti-coagulants offer NO HELP.

Your two quotes together seem to be talking abut both sets, each addressing only the set they want to influence, while ignoring the other set.

Perhaps they should get together & address the aspects of both sets and resolve ambiguities in conclusion. he data they both collected seem to be capable of being merged & re-analyzed.

This tells me that the statement of their respective problems & the hypothesis they wished to prove or disprove were deficient or poorly constructed.

Don

Don

by IAN MC - 2015-12-13 02:12:46

Good to hear from you as always. I almost made the point that both statements could be correct although at first sight they seem to be conflicting.

You would enjoy a book I've just read . It's called " Doctoring Data " by Dr Malcolm Kendrick. It sets out to sort out medical advice from medical nonsense , and there is a lot of nonsense out there !!

Cheers

ian

Suggestion: read on Google...

by donr - 2015-12-13 03:12:02

...a bunch of reports on aspirin by Harvard Med School's "Brigham Women's & Children's" hospital. You will get a bunch of interesting & conflicting info.

Aspirin is both good & bad, depending on sex & age. Not to be taken lightly. No panacea for anyone.

Donr

AFIB

by Goldenoldy - 2015-12-13 07:12:41

I had my pacemaker fitted because of a slow heart beat, I also developed Afib. At the moment I'm on Verapamil, digoxin and an anti-coagulate called RIVAROXABAN.
My AF episodes have increased over the last year,I was told they dont really know why it happens .They took me off Asprin saying recent research shows no benefit. I'm 66yrs old. Hope you get some reassurance.

Afib

by golden_snitch - 2015-12-13 08:12:10

Aspirin does nothing in the prevention of blood clots from Afib, absolutely no effect. Some docs still prescribe it, but studies show that it's not better than a placebo. So, if anything, you need a "real" blood thinner like Warfarin, Eliquis, Pradaxa or Xarelto.

The score that has already been mentioned determines your risk. Without any other issues, just being a women gives you a score of 1. This score means that a blood thinner is debatable; you can take it, but there is no absolute need (that starts with a score of 2).

It also depends on what kind of Afib episodes you had. There are many pacemaker patients whose pacemaker records Afib episodes of several seconds and that's in my opinion just something you can keep an eye on. I have had episodes like that and my EPs said not to worry (EP is currently president of the European Heart Rhythm Association, so he's a good one). Sometimes the pacemaker also mistakes something else for Afib.

Best wishes!

Why are your seeing a GP?

by PJinSC - 2015-12-13 09:12:24

One thing no one has mentioned is that you are seeing a GP (General Practitioner) who is responding to a note from a PM lab Technician?? You need to be seeing a real electrophysiologist who specializes in heart arrhythmia, or at the least a real cardiologist who has arrhythmia training.

And, no one in this forum is a doctor, that I know of, and you should take medical advice from here with a dose of salts. Maybe I am just being a GOM (grumpy old man), but it worries me when I see people asking for medical advice best given by a qualified doctor.

By the way, I have taken Warfarin, Pradaxa and now Xarelto.

PJ

Published papers !!!

by IAN MC - 2015-12-13 12:12:02

What makes life interesting though is that depending on what point of view we wish to push there are always published papers to support that view

If I wanted to convince people that blood-thinners are OVER prescribed , I could quote this from a recent paper :-

" As many as one quarter of people with atrial fibrillation who have a low risk of strokes are given blood-thinners they don't need "

If i wanted to convince people that blood-thinners are UNDER prescribed , a recent paper says :-

" As many as half of the people with atrial fibrillation who could benefit from a blood-thinner aren't prescribed them "

Both quotes came from reputable medical centres.

What is beyond debate though is that strokes can ruin ( or end ) your life . If blood-thinners didn't have risks the decision to take them, or not, would be clearcut but they do have risks. Not an easy decision for you Kelly !

Ian

Aspirin vs. Warfarin vs. Xarelto et. al.

by Dave H - 2015-12-17 07:12:59

Aspirin is an anti-platelet : it will lessen the chance of platelets "clumping" together. Warfarin, Xarelto, and others are anti-coagulants: Your blood will clot, but it will take longer. Aspirin for stroke prevention? --- Latest info suggests it's not appropriate --- an anti-coagulant is preferred. The effects of a stroke are so devastating, it's important to understand how to avoid one.

--Dave--

Thank you for replying

by kellyeng - 2015-12-24 06:12:33

Hi everyone,

Sorry for the late reply - I am now sporting a broken arm:(
its been a hectic few weeks, parents flew in from England and Christmas shopping and work arghh its stressful!

Thanks for all the really good information you have given me and I feel I am not so alone now.

The a-fib.com site is really good thanks its helping me get a better understanding.

Just a quick update,
so still no word from my GP I have called and left messages and still no reply so I am no further forward than my original post:(
GP is now away until the New Year so it will after the holidays before I can see or speak to her.
Maybes as I am classed as low risk my GP doesn't think its a big deal!!

But I don't like the fact my DR and pacemaker rep kept telling me oh you are low risk so we don't know what to do with you!
I am In my 30's with already a heart condition and a pacemaker, I am symptomatic now and I have 2 daughters who need me but I am low risk according to their charts!!
I think at my age and already with a heart problem and showing symptoms I shouldn't be classed as low risk as I have a lot of living to do yet - sorry for the rant I just feel down at the mo!


I am going to ring my cardiologist office and see If I can arrange to see him without my GP referral.

I don't know how to get to see a EP would that have to be a referral from my GP?

I am now suffering from fuzzy vision and this strange thing where where its like I have forgotten how to swallow so I feel like I am suffocating - only lasts a few seconds though but it's scary and I am sooo tired right now but it could be all down to stress I guess!

it's really interesting about how Aspirin has been mentioned a lot as not really great for stroke prevention.
I am also looking closely at my diet to see if I can cut back on anything such as caffeine however I only have maybes 1-2 cups a day.
I have never smoked but I do like a glass of wine on my days off which I should stop and see if it makes a difference.
I am not over weight and I do eat healthy most of the time. I don't take drugs either.
I don't have any other medical conditions and don't take any medication.
Until I got my pacemaker I would of put myself down as a healthy person. (well apart from my broken arm I have now lol)

My A-fibs seem to last around 6 minutes - maybes that isn't a long time so that's why they not to concerned about me.

I think would just feel more at ease if I knew I was on meds (even with the side effects) to help prevent anything happening to me such as a stroke as now I feel I could be a walking time bomb.

Thanks again for replying to my post I really appreciate it.

Kelly.


Effect of Wine

by PJinSC - 2016-01-15 03:01:30

I know this is a late comment, but your mention of wine reminded me that I quit drinking heavy red wines because they seemed to trigger an A-fib episode, even after the PM. Now only a couple glasses of white wine in the evening and maybe a beer now and then before dinner and I do not have as many episodes.

Now if I could just kick the caffeine.....

PJ

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