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Lots of questions but basically what's next?

sharonp79 profile image
12 Replies

I was diagnosed during a routine minor operation to have atrial fibrillation nearly 2 months ago. Since then I have been taking 5mg of bisoprolol and aspirin and after a couple of weeks I was put on warfarin. My heart rate is still high many times (up to 152 bpm) each day but also gets as low as 35bpm. My GP says I am not allowed to exercise. I have still to see a cardiollogist (appointment 1st May) but am finding it difficult to get my head around. I am 45 years old, arthritic (already had a knee replacement) and admittedly am overweight. My blood pressure is perfect and my choloesterol level is low..

Am I looking at a lifetime of warfarin? Can you still have a stroke whilst on warfarin?

Any ideas what the cardiollogist is likely to say?.

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12 Replies
elmbury profile image
elmbury

Really your best bet is to ask your cardiologist these questions - they will be in full possession of the facts e.g. heart traces. Best not to second guess a specialist who will know more about your condition and the likely outcomes than we do, and it is only a couple of weeks until then (though I can understand that it may seem like an eternity to you).

sharonp79 profile image
sharonp79 in reply to elmbury

Many thanks for your reply.

I know you are right but patience is not one of my virtues lol.

Best starting writing a list of my questions...

Best Wishes

Sharon

Beancounter profile image
BeancounterVolunteer

Hi Sharon

Well you will get a lot more information specific to you when you see your cardio, but maybe it will help to run through a few things in the meantime which might allay some of your fears.

The big risk from A Fib as you say is stroke, that it beacuse the strange heartbeat can leave small pools of blood in the heart which if they clot are are then pushed round the body may then cause a stroke.

You are on aspirin, probably small dose 75mg or so, mainly because aspirin helps stop the blood clotting at all, and on warfarin because this breaks down clots and as you know they will measure your INR which is a clotting factor and try and get it between 2 and 3 or 2 to 3 times longer to clot that "average"

There is a lot of dispute on the use of aspirin in A Fib, and doubtless you will find out about that.

Can you still have a stroke? Well yes, but the risk is much lower when on warfarin, and the cardio will do a CHADS2 score on you, you can google and do it yourself, from what you say you may well be on zero.

The Bisoprolol is a beta blocker and that is keeping your heart rate lower than usual,

Honestly the worst bit of the whole thing is the diagnosis, and then the unknown about what will happen or when, and "OH God it's my heart" we have all been there and we are out the otherside. It's the scariest thing that has ever happened to me and probably most people on this forum.

Me?, I'm in persistent A Fib so my heart is always out of synch, and I am on warfarin and also take bisoprolol and asprin.

I'm not going to comment on the range of heart rates as probably best if your cardio does this for you, you can expect a lot of tests, ECGs and blood for certain, probably an echocardiogram, and possibly a CT scan, (like a X Ray with dye inside you to see the inside of your heart)

Will you be on warfarin for ever?, No idea, but to be honest once you get used to it, it's no big deal, just another pill to swallow and hardloy anyone has side effects, and the dietary bits are just easy and not really a problem.

I suspect your cardio will allow you to exercise by the way, the excess weight (Like me) is not helping the heart so although the doctor is being careful, you may expect the cardio to actually encourage you to exercise within limits.

He will probably want to know about the symptons more than anything, and it's that they will treat. The AF itself is not dangerous per se, it's the symptons and the effect on your lifestyle which makes the difference and everyone is different and everyone's treatment will be different. I am almost symptom free, just the constant uneven heartbeat.

Make sure you visit the AFA website (click at the header) loads of useful information and stories there and descriptions of the various types of treatement.

Anyway everyone here knows what you are going through, we are here to answer questions, give support or just be a shoulder to cry on. Feel free to shout as loud as you like. :)

Best wishes

Ian

sharonp79 profile image
sharonp79 in reply to Beancounter

Hi Ian

Many thanks for your reply - your comments make be feel "normal" so thank you for that! It's good to know that there are people like you to turn to.

Does persisitent AF mean that your heart rate is always over 100 bpm?

Mine fluctuates so much and I think it dips low a couple of minutes before it goes high, although, as far as I know, it hasn't gone over 152. I thought the bisoprolol would stop it so do wonder how high it would be if I wasn't taking it.

Ah well just have to wait and see - just over 2 weeks to go.

Thanks again

Sharon

Beancounter profile image
BeancounterVolunteer in reply to sharonp79

Hi Sharon

Yes 2 weeks is not long, and start writing down the questions you want to ask, I guarantee the cardo will appreciate it, it makes it easier for them. And take someone with you who you have been through the questions with, it will make it easier as you are going to get a lot of information in a very short time.

Persistent? there are 2 (or maybe 3) types of A Fib,

Paroxysmal which is when people get episodes of AF of varying degree of severity; heart rate usually up but sometimes down; an episode can last hours or days, but in between episodes their heart is in NSR (normal sinus rhythm) Usually diagnosed by wearing a 7 day monitor unless the doctor happens to catch you in an episode.

Persistent, like me, where my heart is never in NSR and if you listen to it, the irregular beat is there all the time, good for scaring people at parties and me when diagnosed. But my heart beat is often down in the 70s and only seldom over 100. But if I exercise it jumps to 120 real quick.

And then some say there is a 3rd which is longstanding persistent, or permanent, which is persistent AF over one year long. I have only been diagnosed for 4 months, but have probably had it for 5 yrs or me, so you tell me if I am persistent or permanent?

take care

Ian

in reply to Beancounter

Don't want to appear pedantic but as an AF patient of 20 years ( since the age of 48 ) I was always given to understand that Persistent AF is where the patient remains in AF for 7 days or longer or requires a DCCV to revert to NSR . I was such & have had 10 DCCV's to date & my 3rd ablation is due next week. Permanent AF is, not surprisingly, when a patient is permanently in AF. Paroxysmal , of course, just comes & goes but can be just as distressing .

TheStand profile image
TheStand

Sharon,

Ian did a great job answering your question...

As he pointed out, Most studies have shown that aspirin is almost useless for stopping stroke in Afib patients and can actually promote internal bleeding which is a real problem if also taking an anticoagulant.

Concerning your heart rate, Yours is a normal problem that is present in those patients with AF. Bisoprolol is a beta blocker commonly used for those with high blood pressure. By slowing down the heart, the blood pressure is lowered. This causes a problem with people who have AF. The amount needed to slow down the heart enough to make AF more tolerable also has the effect of slowing the heart when you are not having an AF attack. The 35 BPM that you stated is pretty low.

There are 2 common approaches with medication to control AF:

The first is "Rate Control", which is what you are on. The down side of rate control is that (as explained above) it slows down the heart also during the time that your are not in AF. And will not actually stop or control AF, but only makes it easier to live with.

The second is "Rhythm Control". These meds attempt to hold (or keep) your heart in rhythm. By holding your heart in rhythm, an AF attack doesn't happen. I used the word "attempt" because they normally do not work 100%. Most will still have an attack but normally much less frequently. The down side to these meds are... Some of them come with some really nasty side effects and because the med doesn't really slow down the heart when you do have an attack the heart will race at full speed making it feel like it did when you weren't taking any meds.

Many Drs will use a combination of both. But the heart rate and BP must be kept in mind. For us it is well worth the money to get one of those auto BP machines. Mine will also tell me when my heart rate is irregular. A few years back (I was on the combination meds) I went in for an appt and showed the DR my BP report. He noticed that my heart rate was running in the lower 40's and cut back my metoprolol to increase my "resting" heart rate.

I was about 45 when I was diagnosed also. Yes it was hard hearing that I had a heart problem. I remember thinking that heart problems only happen to really old people, so why am I having a problem?

I think your GP told you not to exercise just to be careful until you are seen by a specialist. Your question about being on warfarin forever???? Well that is a choice that the Dr will make using the Chads2 test. I don't really like taking it because there are some bad side effects BUT the idea of a stroke is much worse. Recent studies are reporting that over 35% of those with AF, who are not taking any anticoagulants, will have a stroke. That is a big number and make it worth while.

Some questions for your appt....

1. How much experience do you have with arrhythmia problems? If you see a cardiologist, many have not really dealt with these problems a lot. If you have any doubts, ask to see an EP (Electrophysiolgist), They deal directly with rhythm problems of the heart and are normally up to date on the most current procedures and treatments for AF.

2. Ask about rate control VS rhythm control treatment.

3. Ask about the different procedures for "Curing" AF.

Before you go to your appt.... Research, study, learn and become very informed about AF and it's treatments. The better you understand this problem, the better your outcome will be.

Welcome to the forum.... There are many of us who have been right where you are. We are always there to pass along what we have learned and happy to listen when you just "Need to Vent". Don't hesitate to ask if you read something that you don't understand. Many of us have been dealing with this for a long time (13 years for me) and sometimes use terms that we know, not thinking that someone new to this might not understand. Keep us updated on your journey and know that you have friends here that Understand your frustrations.

Tim

rosailor profile image
rosailor

Tim,

Thanks for all your information.

Could you tell the make of a good heart rate machine as mentioned in your reply.

I have one but it is very difficult to read because of it's size.

Rosailor

TheStand profile image
TheStand

rosailor,

I use the Omron BP791IT. It records your BP, Pulse and also whether you have an irregular heart beat. The display is pretty big. You can also connect it to your computer and it save your readings so you can print them out for Dr appts.

Tim

Beancounter profile image
BeancounterVolunteer in reply to TheStand

Rosailor, you might wish to check out the Omrom M10-IT from Amazon if you are in the UK. Not sure that the model above isn't a US one, but they look pretty similar in terms of features. £34.95 currently on Amazon

elmbury profile image
elmbury in reply to Beancounter

I've had the Omron M10-IT for some time now. An excellent machine - sturdy, easy to use, seems accurate and a nice large display.

fairgo45 profile image
fairgo45

Kardia will tell you when your in A/fib and what your heart rate is as well as a little snapshot of an ECG also the Omron M10-IT will tell you your blood pressure your heart rate and when your in A/Fib a little black square appears.

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