Was told i was low risk but had two strokes

[lisab5500]

hi everyone, my first time on here. Im 46 and was told I had AF during a routine op in Oct 2014. Finally saw the cardiologist in March who said I was at very low risk of stroke. Three weeks ago I had two stokes, thankfully minor. I am now on Apixaban, betablockers and statins. I feel ok, dont think I have any side effects but am scared about being on these drugs for the rest of my life. Im still not sure if AF is something I have to live with? I know no one will have an answer but just wanted to share my thoughts with others that understand, thanks for listening x

[wendicarro]

Hi Lisa,

I had undiagnosed AF until I had a varicose vein op a few years ago when I had an episode during my OP, They advised me to follow it up and I was referred to a cardiologist and things happened from there,Have recently had a pacemaker and an AV node ablation as I did not respond to treatment or drugs but this does not happen to everyone.

You need to speak with a cardiologist to find the way forward I think.

Good luck,

Wendi x

[jennydog]

Hi lisab5500, welcome to the forum. I hope that it will prove as helpful to you as it has for so many of us.

You have been very, very unlucky but hopefully things will improve now that you are properly anti-coagulated. I have been told that I must stay on an anticoagulant for the rest of my life because the risk of Arrythmia will always exist whether or not I can feel it.

You need a good Cardiologist and a referal to an Electrophysiologist would be a good idea. Meantime do not worry about the drugs. They are essential at this stage. Their efficiency and effects can be weighed up in the future. What is right for you is unique to you.

I hope that you will continue to post with your experiences and questions. You will receive fabulous support.

Very best wishes.

[BobD Volunteer]

Hi there and welcome to the mad mad world of AF . You have found to your cost that AF and stroke often go hand in hand,. I guess what you had were TIAs or mini strokes and you are lucky and are now on anticoagulation. Sadly this may well be for life but need not alter you life if you don't let it. AF often progresses and needs more aggressive treatment but since you were unaware of it you again may be one of the lucky ones. Many people are knocked flat by it!

My advice would be to go to AF Association website and read all you can from the fact sheets there as knowledge is power. In this game we all need to become our own experts on our condition and take charge of our own treatment as few GPs are up to the job and many ordinary cardiologists fail many patients with AF. Electrophysiologists are cardiologists who specialise in rhythm disorders so when you are ready you should find one and go and see him/her. There is a list by area on the main AF A site under patient information. Demand that your GP refer you.

To all those members who think that they are low risk until they magically reach 65 please take note.

Bob

[PeterWh in reply to BobD]

Also get the CareAF information pack sent to you.

[StuartCJones]

Hi Lisa, I had catheter ablation therapy on Monday this week, I've been living with AF for about 7 years now.

I'm really sorry to hear about your strokes. I hope you are able to fully recover and move on with your life. Having a stroke is something I really fear, so you're an inspiration to me already.

I am also now on Apixiban, as well as Flecanide (which I have been on for about 5 years). If the ablation has been successful (I.e I don't get AF anymore) I hope to be able to stop both drugs (and be completely drug free!) in 3-4 months.

Best wishes,

Stuart

[Dodie117 in reply to StuartCJones]

Stuart.

Well done on having the ablation and good luck going forward.

A note of caution. As I understand it, most people remain on anticoagulants ((for life) after ablation as ablation is a treatment not a cure and AF can return.

I came off all other drugs but continue to take warfarin.

You may be different but just saying double check with your EP.

All the best. Marie

[StuartCJones in reply to Dodie117]

Duly noted, thanks Marie. Great to hear that you were able to come off all other drugs.

[Barry24]

Hi Lisa,

Keep your chin up, and try not to worry. I myself have recently been diagnosed with

atrial flutter. You get fantastic advice and help from this forum.

Please take Bob's advice on board, he has a huge amount of knowledge.

Kind Regards

Barry

[AnticoagulateNow]

A lesson for many who visit this forum. AF and stoke are too closely associated to be without proper anti-coagulation, no matter how young or otherwise fit we think we are. With the simplicity of taking NOACs there really is no excuse any longer. Yes, you're on medication for life......so what? You're only swallowing a pill once or twice a day; it's quite painless and there's no reason that life won't be a long and satisfying one!

Everyone must make up their own mind of course but you are now properly protected Lisa and there's a lot less to be scared of going forward.

[Hi-1964]

Hi I am 51 and was told I'm low risk and so not given blood thinner even when asked for ! How often and how long are your AF episodes mine last seconds .

But as I understand it's not about length of episode but that it does it ?

[lingooz in reply to Hi-1964]

Hi you must be more insistent about getting anticoagulant my cardiologist said I was low risk but still advised I take warfarin ! Good luck

[PeterWh in reply to Hi-1964]

I was told by someone that it can only take one episode and hey presto a stroke. AF sufferers have five times the risk of a stroke and for those with an atrial appendage this increases again.

[Rellim296]

I think, Lisa, that you're in quite a strong position. You have had two strokes without serious damage and it's clear that, for you, anticoagulation makes sense. You are on an up to date anticoagulant and other appropriate medication. Lots of people are taking medication - or not taking it - as a leap of faith. You know where you stand and others don't.

AF doesn't go away, as Bob says. We all need to prevent it from ruling our lives and it can be successfully managed and controlled in a number of ways. New innovations are being approved all the time and who knows what the younger AFers will live to see introduced.

[lisab5500]

Thanks everyone, it really does help hearing from other people that know what the condition is like. I look great so people think everything is ok, AF is hidden. Most of the time I am not aware of my AF but approx two or three days per week it hits me like a train. I cant get to the stop of the stairs without stopping and catching my breath and walking my dogs become a chore that scares me as im constantly stopping for breath. I dont seem to get the heart flutters or I dont feel them but I really struggle with my breath. Im not unfit and enjoy being on the go but exercise seems to floor me. For this reason I would like my AF sorting but I understand that it is likely to be with me for life - hey ho!

[Hidden]

Hi Lisa, so sorry that you had to suffer 2 TIA s before you received anti coagulation . Regarding your breathlessness that you are experiencing...this could well be due to your beta blocker. Is it Bisoprolol ? I could only cope with the smallest dose of this , anything much more & I felt as if I was walking through treacle. You might find it helpful to discuss this with your GP or cardio. Regards. Sandra

[lisab5500]

Hi Sandra, they have only just put me on Bisoprolol since the mini strokes, Ive had the breathlessness for months, ive presumed this is how my AF materializes as I dont really have heart flutters as other people describe - who knows? kind regards lisa

[AnticoagulateNow in reply to lisab5500]

Breathlessness and tiredness are common when in an AF episode Lisa. For many, a sudden inability to climb the stairs without effort is the prompt to feel one's pulse for the tell-tale sign they are in AF. Your heart is probably only working at around 70%. But don't accept that this is 'with you for life'. The condition might be, technically, but an ablation could mean you are free of the episodes for years and therefore free of the energy-sapping symptoms.

[lisab5500]

Thank you r reply. Im going to pursue my Drs for a referral. Will keep everyone posted, thanks again. Lisa

[PeterWh]

Lisa. Only just seen this post. I have made some comments above. I also suggest that from now on you only use one pharmacy as they will probably keep electronic records. Where I live an added advantage is that I can order repeat prescriptions from the GP online and then they send prescription electronically to the pharmacist. Not all areas have this level of sophistication!!

In addition a key thing is to get your blood tests redone after 3 months and after 6 months and then annually after starting the drugs particularly the statin(s). Statins appear to be the standard issue but they suit some people but for others they can cause significant problems. Fortunately for me I was given a set of blood tests at the start before the drugs so had a baseline. I was given Simvastatin. I had Apixaban as anticoagulant but then after 3.5 months had to switch to Warfarin so that I could have an ablation. Initial Warfarin was from the hospital which is one of the three that form the trusts anticoagulation service. Repeat prescription ordered from GPs and when picked up from pharmacy they said would I like to come back for a full medicine review (and help) with the pharmacist. Booked for next day and really was a smart move and 20 mins excellently spent. This was now just over 5 months after starting. Pharmacist told me about blood testing regime and suggested that I got them redone. Just as well that I did because it showed the liver function was significantly raised (but not dangerous) and so simvastatin was stopped immediately. This had an added advantage as I was just about to start Amiodarone in prep for the ablation and one of the side affects is affecting liver (and kidney) functions. Told not to take.

The moral of this story is that it is easy for things like blood testing to fall between the stools (the GP and the hospital). I suggest that you always get the GP to do it then all records are available in one place. Also the pharmacist has a lot of knowledge of the various drugs and their interactions and also they deal with patients from multiple GPs with the same condition.