A.F. Where do I go from here. - Atrial Fibrillati...

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A.F. Where do I go from here.

sue5511 profile image
26 Replies

Good morning. I have been diagnosed with AF. for 15 month's. I was offered a cardiovasion in September 2016. I decided against it. As I was so afraid. Needless to say the Specialist was not happy. I did ask if there was anything else he could do ,but he told me that he had given me his advise which now I was refusing. He said he could put me back on the waiting list to have it done , but with no guarantee it will work as It is less likely to work after a while. So this is where I am at the moment. I take Digoxin and Warfarin . Not sure what to do now. Any advise.

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26 Replies
jeanjeannie50 profile image
jeanjeannie50

Morning Sue, I would have jumped at the chance of having a cardioversion. It's so lovely to wake after having one to be in normal rhythm again and I've had quite a few. The procedure takes about 10 minutes and you are usually given a general anaesthetic and are totally unaware of anything being done. You've probably got as much chance of winning a big lottery pay out as having a problem with the procedure. A forum member on here who has had AF for a long time has had about 18.

However, of course it has to be your decision.

Jean

sue5511 profile image
sue5511 in reply to jeanjeannie50

Thank you Jean for your reply. I think it may be my only alternative really. As I find I'm getting breathless more often now. So glad it worked for you.

Sue

jeanjeannie50 profile image
jeanjeannie50 in reply to sue5511

Sue, I know it sounds daft but I love having them. I don't fear them at all.

Jean

sue5511 profile image
sue5511 in reply to jeanjeannie50

Wish I could have been in touch with you a few months ago. I was so flipping scared, sounds silly I know. Aww well hopefully I get a new appointment soon. Kind regards Sue.

CDreamer profile image
CDreamer

Hi Sue and welcome.

Jean has offered useful information but I think it is your fear that you need to address - for 2 reasons.

1. It is preventing you from accessing you health care which will improve your quality of life

2. Worry and anxiety, panic will increase the intensity and frequency of AF whereas calm and relaxation will aid your feeling of wellbeing and help to calm your heart and I find calming breath control can even stop AF, not always, but sometimes.

You don't give information as to the type of AF - is it PAF = paroxysmal i.e. - comes and goes; persistent - i.e.- there all the time but can be cardioverted or permanent i.e.- cannot be cardioverted - or do you not know?

If you are in AF full time but don't know if it is persistent or permanent then at the very least a CV will determine this and possible next steps in healthcare.

Best wishes CD

sue5511 profile image
sue5511

Thank you. No I'm not sure what type it is, but on reading you reply it must be PAF. Regards Sue

I can understand your concerns Sue, but most of us have had a cardioversion and as others have said, it sounds far worse than it really is. By not having one, it may have an effect on being offered other treatments which could result in having no option, but to take AF medication for the rest of your life. Obviously, it has to be your choice, but if you change your mind, try ringing your specialists secretary as soon as possible, because the longer you wait, the less likely a cardioversion will be successful.....good luck

sue5511 profile image
sue5511 in reply to

Thank you for your sound advice. Yes your right I think it's my only choice. Maybe I should have explained my fears to the Specialist. Regards Sue

Rellim296 profile image
Rellim296 in reply to sue5511

Maybe your specialist should have set your mind at rest and made you less fearful.

sue5511 profile image
sue5511 in reply to Rellim296

Yes I should have asked more questions I suppose. Thank you for reply.

Phyllie profile image
Phyllie

Hi Sue. Not sure if this will help but Let me share my experience. Two months ago I had my first cardioversion and first experience of being put to sleep in 40 years. (I am even scared of dentist numbing my gums and it is not cause I am afraid of needles). To say I was afraid is putting it mildly - absolutely terrified better describes it. I was scared to death. The ER doctor presented my options: cardioversion or return home still in AFib. They could not convert me with IV medication (another option) because I was already on anti-arrhythmic medication. The ER doc was very patient and explained the procedure, how many they do in the run of a week, how safe and successful, etc. Didn't do much to ease my panic. He gave me an hour to think about it. Despite my fear of being put to sleep and everything imaginable going wrong and not waking up again or waking up feeling weird, I very, very, very, and very reluctantly agreed to do it and get it over with. As the saying goes, feel the fear and do it anyway which is what I did. I definitely did not want to stay in AFib. So I very begrudgingly agreed. I took a deep breath and thought, "ok, let's get on with it". The procedure, getting me ready, and the sedation took all of 5 minutes. Doc said I was asleep for less than two minutes. When I awoke from the most peaceful sleep ever, it seemed I had blinked and was never put to sleep. I commented to the nurse, "oh my goodness, that was easy. I would have that done again in a heartbeat". I felt terrific. No after effects - no AFib ((yayyyyy) - and left the hospital within ten minutes of having procedure done.

May I ask what are your fears? Maybe if you name them out loud to a trusted friend or write them down they might seems less frightening. Mine were fear of being put to sleep, of not waking up, my heart stopping, feeling sick afterwards, feeling groggy post-procedure, dying. And the big one for me which summarizes all my fears - not being in control. All legitimate fears. But none were realized. If needed, I would have it done again without any hesitation - and the biggy, without fear.

Peace and blessings to you Sue. I know how scared you are. We are all holding hands with you.

Phyll

sue5511 profile image
sue5511 in reply to Phyllie

Oh Phyllis what a lovely way of putting all MY fears together.

My biggest fear is like you put it... not waking up, when I write it down it seems so silly.

Some very brave people have to go through open heart surgery.

To be honest I think the specilist was annoyed with me, As he said I should have asked him more questions to put my mind at rest, yes I should have, but I just didn't.

I will phone his secretary on Tuesday. Maybe see if he has kept me on his list or given up on me.

Kind regards Sue

Phyllie profile image
Phyllie in reply to sue5511

Sue - no fear is silly. Fear is an awful feeling. It can stop us from really living life as fully as we can. It has such great power to cause us to make decisions that have a negative impact on our lives. But I try not to let it run my decisions - sometimes I am successful, sometimes not. But in this instant, I did it anyway with fear in full swing as I was prepared for the procedure. Strangely though, as the doc was about to give me sleeping medication, the fear just disappeared and I just closed my eyes peacefully and told the doc to "Do your stuff." And it was just fine. And I was just fine. All was right in my world.

Well, it really was up to your cardiologist to present you with the facts and to reassure you and put your fears to rest. Sometimes it is very difficult to formukate a sensible thought or questions when you are under stress, anxiety, and fear - so don't hammer yourself for not asking questions. Btw your fear of not waking up is just as real for you as that for a person having open heart surgery. Fear is fear.

I have discovered thru this journey that we don't always have to be strong and brave to do something, We sometimes have to listen to that inner voice that says, "You are doing just fine". We are fine, Sue, even as we carry around our bag of fears and anxieties, even as we tremble and shake which I did before my procedure. (They had to get a warmed blanket for me I was shaking so much:))). Courage comes into play when we move forward anyway with the fears walking side by side with us, Taunting us to cower back into the shadows and do nothing. The fear will go away as you boldly move forward. To paraphrase Mary Ann Radmacher, "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow". And I know you will do a tomorrow rather than live in the grip of Afib and fear.

So call that office - you have a right to change your mind. Tell them you were so afraid to have it done but you have had second thoughts and are now anxious to have it done. Let them know of your fear and vulnerability. Any one with a heart would empathize with that and do all they can to get this done sooner than later.

All the best. You will be just fine. You are just fine.

Blessings to you.

sue5511 profile image
sue5511 in reply to Phyllie

Thank you so much for your words of comfort and reassurance. Can I just ask you have you had A F for very long? Thank you regards Sue.

Phyllie profile image
Phyllie in reply to sue5511

I was diagnosed in 2010. But I suspect I had tiny episodes two years prior to that. I play women's hockey and prior to my big episode on the ice during a particularly fast shift, I recall during other games the previous two years, I would experience a lot of missing bests and palpitations when I sat on the bench which lasted for only 20 seconds or so, then would disappear until the end of my next shift. I was puzzled but not alarmed.

Since then, I went three years without an episode but they started up again in 2013- 2014. After numerous visits to Emergency department where I adamantly refused cardioversion due to fear, I was referred to electrophysiologist who prescribed flecainide and blood thinner Xaralto. Good for two years and a bit - started again about two months ago due I suspect because of a bad flu. Was cardioverted for the first time

I am now taking increased dose of fkecainide and seem to have stabilized. Of course, I am now over the flu so I suspect that has helped things as well.

CDreamer profile image
CDreamer in reply to Phyllie

Lovely Phyllie, well said!

sue5511 profile image
sue5511

Thank you once again.

Your messages are very helpful and much appreciated. Kind regards Sue.

castanes profile image
castanes

I had one done last November after the drugs did not work. I was scared too as I was in a hospital in Mexico at the time, however I went ahead with it as I felt so awful with my heart being in AF. Woke up later with my heart in normal rhythm. It is painless, it is a routine procedure for people in AF who don't respond to medication. You should consider having it done. I do not regret having the procedure done in retrospect and I would not hesitate to have it done again if it were recommended to me. All the best to you. Let us know what you decide.

sue5511 profile image
sue5511 in reply to castanes

Thank you so much for taking the time to reply to my message. Yes I will phone my specilists secretary on Tuesday to hopefully arrange an appointment As I have had such positive replys on here.

Kind regards Sue.

castanes profile image
castanes

Best of luck and please update us regarding how you are Sue.

sue5511 profile image
sue5511 in reply to castanes

Thank you for reply.

vonski profile image
vonski

First thing I would do is change cardiologist. His attitude sucks!

SBGal profile image
SBGal in reply to vonski

I have been through four terrible cardiologists! One was worse than the other, primarily because they are all in the same "team" and either backed each other up on bad ideas for me, or they didn't agree which made me very confused. Each time I went into the hospital I was seen by a different cardiologist each day. It was a nightmare to say the least. I finally got in to see an EP and he basically said "every doctor has there own thoughts in how to treat a-fib" a lot of help he was! But he did say I did NOT need a pacemaker and that was refreshing because all the other kept pushing for it. Right now I am on 120mg Diltiazem 2x's a day and a, waiting for a cardioversion - with an altogether cardiologist, at a different hospital! First and foremost, find a cardiologist you like and can trust! All the best, this is a great forum!

sue5511 profile image
sue5511 in reply to SBGal

So sorry you have had a bad time.

I hope your feeling better soon. Thank you for taking the time to reply . Sue.

cuore profile image
cuore

I just had my first cardioversion Thursday, April 13/'17. The experience was most positive because fear was eliminated and because my comfort was highlighted. Warm blankets were placed over me so I felt so toasty. AS the nurse buzzed around preparing me, she always told me what was going on. The EP came, introduced himself and asked if I had any questions. The anaesthetist told me exactly what was going to happen. Plus, there was another medical person there whose role I don't quite know but who talked to me to put me at ease. I woke up as if I hadn't even been put to sleep for the procedure. To top it all off, I was treated to breakfast which I chose as orange juice and a egg salad sandwich. The best part was that I was back in sinus rhythm for the day which made my spirits soar. If you chose cardioverson, you will be just fine.

sue5511 profile image
sue5511 in reply to cuore

Thank you for this positive reply and taking the time to send it.

Kind regards.

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