AF a complete surprise

Hello, I am so very glad that this site is here. Already a source of information and helping quelling that feeling of being totally alone as I don’t know anyone with AF

I have recently been diagnosed with AF. This came about at Christmas, I had a cough was prescribed anti biotics by a hospital after a 111 appointment, and I then needed a note signing me off work. During my Dr's exam he noticed an irregular heartbeat, and then arranged a chest X Ray, Blood test and ECG.

This resulted in AF diagnosis, prescription of Bisopol 2.5mg, and follow up appointment to another local surgery for an echocardiogram. This Dr then increased Bisoprol to 5mg and I am to attend a local hospitals Anticoagulant Clinic for prescription of Warfarin this week. As far as I know this second Dr is not an EP .

I don’t generally look at medical related conditions on the internet as I scare very easily, I do have serious white coat syndrome. This however is different, and I have read a lot,the best discovery has been this site.

I plan to be travelling to Thailand in April ( I am usually there a couple of times a year ), and I am concerned that I will need to be getting INR checks, I am sure that is possible but don’t know where yet as a couple of the hospitals I have e mailed have not yet responded. Also, it seems that most Thai food contains vitamin K and I so enjoy it .

I have not been given any options on my treatment and Warfarin seems to be the way chosen for me. What I have read of Warfarin has made me very nervous, the need for regular blood checks, striving to get and maintain the correct reading, the limits of food and some medicines. I have seen references to Rivaroxaban and NOACS- I understand there is no antidote- is this the only major significant downside ?

In other members experience is Warfarin always the first and only option?

I feel very weepy and sorry for myself is this an effect of the Bisoprol? I really don’t want to slide into depression, but is so hard to feel positive I am so scared.

Thank you of reading this apologies if I seem a little complaining, but appreciate the option to say something to someone.

23 Replies

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  • Hi Ageing Hippy

    The diagnosis of AF is always scary, and then the battery of tests and lack of information makes it a very traumatic time.

    Let's start with anti-coagulants, Warfarin is nowhere near as bad as it's press, yes you need regular blood tests, and yes you need to avoid cranberry juice, but you will have no problem with Thai Food, it's not that Vit K rich, and even if it was you adjust the warfarin to your diet, not your diet to warfarin.

    BUT if you are going in April you will probably still be on 2 weeks blood testing as they try to normalise you to 2.5 INR and you will need tests in Thailand, most of the private clinics will do them, we had someone here before who from memory paid around £25.00 a test.

    A NOAC would be easier for you given your travels, and yes there is no immediate antidote but that really only matters with major trauma bleeding or a brain bleed, and in that case the NOAC might be the least of your problems, and they do have back up procedures and processes.

    The good news is the early diagnosis, ideally now try and get in front of an EP and discuss treatment plans, try not to worry which is easier said than done, but AF is very seldom fatal, as one doctor says it just feels that way at the time.

    Ask anything you like here, and do read the AFA website from cover to cover loads of really good stuff for you.

    Be well

    Ian

  • Ian thank you for fast and clear reply, I appreciate this very much. Something positive for me to think about

    Kind regards

    David

  • Hi

    I think Ian has covered everything- I started on Warfarin but have recently changed to Apixaban- the latter is easier but warfarin is not as bad as you think when you first hear about it. You are supposed to be given a patient decision making aid ( after NICE guidelines this year) and this helps you to have choice re anticoagulants as long as your choice is medically suitable for you- do look at the information on the AFA website about this.

    good luck,

    best wishes,

    Rosemary

  • If not too personal may I ask why you changed to Apixaban?

    I have just found the decision aid-something for Monday

    With thanks

    David

  • Yes- I have quite severe knee problems and need to lose weight and it is easier to do this when interactions with foods with Vit K don't have to feature in the equation!

    I found that green stuff made me drop below range when having Warfarin. Although it's true you can take more warfarin to be able to eat a lot of foods high in Vit K it also means you have to have that amount of Vit K every day or one's INR can rise.

    I self tested so monitored this quite carefully.

    Mark, on this forum, has worked out a good way to stop variation of INR,while taking Warfarin - I hope he will give you details!

    The NOACS are still an unknown quantity against the known difficulties of warfarin but so far I have found Apixaban much easier- it has to be taken twice a day at exactly the same time as has short half life.

    The main thing is to be anti-coagulated if your Chads Vasc Score merits it ( details of Chads Vasc on AFA site)

    best wishes,

    Rosemary

  • Rosemary- thank you

    Appreciated

    David

  • Hi Rosy G

    Thank you for the reply. I was unaware of the decision making aid, nothing like that has been offered to me, just a decision that Warfarin was the way for me. I will discuss with my Dr this Wednesday.

    Wow this forum is so good already I know more than I did 6 hours ago . I will have a search for the aid

    Many thanks

    Have a good week

    David

  • Just a point on the Mental Health side, many of us I suspect have felt we were approaching depression at the outset. My advice to turn this around is to accept there will be some changes to lifestyle which can be turned into something positive if you are lucky and collect as much information as possible to stay in control with those White Coats.

    Good Luck and enjoy Thailand.

  • Thank you, for this I will give it a go. Thankfully although 65 I still work so the day is busy

  • That's good you are working, retirement what's that!

    I have reduced my work a bit. Watch out in the evenings as I have read some of us males have a nasty habit of increasing cortisol production x7 at the end of the day causing worry out of all proportion . I have combatted this by mild exercise, new club activities (e.g. table tennis after 40+ years), comedy programmes and a deliberate focus on the positive things of each day - writing these down in a diary is best.

    Hope that helps.

  • Warfarin has never been a prob for me. Cuts don't seem to bleed much more than before and I eat and drink what I like but stay in range.If I was you and want to travel I would strongly ask to go on one of the new anticoags.

    The main reason being that travel insurance companies worry about warfarin because it has to be monitored

    Make sure you sort out your insurance in good time as some companies will not cover you if you are still under treatment/revue.

    AF has not changed my life. There are a lot worst medical conditions you could be suffering from.

    Good luck.

  • I suggest that you go to Doctors first to use the decision making aid because if it is a true Warfarin clinic then that is all they will offer as it is probably nurse led not doctor led. If you choose one of the new COAGs now you can always be switched later to Warfarin. I was on Apixaban for over 3 months before starting on Warfarin and then it only took 4 days to being able to stop Apixaban. Whilst on Apixaban I had a cardioversion and the only reason for the Dr switching me is so I can have a catheter ablation. However you will need to take the NOAC taking into account time zone differences (eg if you take them at 7am and 7pm UK time in theory you will need to take them at 2pm and 2 am). However I was told by pharmacist that it was + or - 1 hour so you maybe able to inch the times before you go and therefore make it more reasonable or pharmacist may have other ideas.

  • Sorry you are feeling low. It happens to most of us here at some time or another. AF is a strange old condition which affects us in different ways but we are all here to share our thoughts and give support to each other.

    I take Rivaoxaban, two years in now, no hassle or side effects. It has been a good drug for me to date.

    Hope you get to Thailand and enjoy yourself. I would want to check medical services there just in case. Remember flight socks, moving about on the plane and keep hydrated then enjoy.

    Be well.

  • Hi Ageing Hippy

    Have you asked why you are being put on warfarin. Do you have other factors that the Dr needed to consider before putting you on warfarin, such as hypertension, cholesterol, structural heart conditions.

    Bisoprolol does not suppress AF as it is a rate control drug. Was there any discussion about alternative drugs that will suppress your AF (rhythm control drugs include propafenone, flecainide, amniodrone).

  • Good question, the reason I was given so as to reduce risk of stroke by thinning of my blood, Warfarin being their drug of choice. Yes I do have hypertension which is managed by a handful of pills each day including a statin. The Bisoporol issued to reduce heart rate. I have never heard of the other drugs- soemthing to add to my list for Wednesday meet with GOP suddenly my routine 10 Minute appointment seems inadequate.

    Tnank you

    David

  • I was asking as I was put on Bisoprolol when my AF was first diagnosed. It did not help and after tests, ECG/Treadmill/ultrasound I was put on the anti arrhythmic flecainide. This stopped the AF in its tracks when I first took it and I was mightily relieved at the time.

    I was told my heart was structurally sound.

    It might be worth asking about the possibility of being referred to an electrophysiologist (EP) as well.

    AF tends to be progressive, you will hear the term AF begets AF quite a lot. EP's specialise in physical intervention by ablating the sources of the additional electrical impulses in the heart.

    However, I know the condition is frightening/stressful and depressing but there is plenty of support and advice and you will be told that you will not die from it. ( Even though you may feel doomed and disbelieve at times) So keep your spirits up and find out as much about your case so as you can make the right/informed decision for yourself.

    If you want anymore info don't hesitate to ask.

    Neil

  • Thanks Neil sounds interesting, were you still able to drive after the fleciamide. What is ablation like to go through, especially for a medical scaredy like me. I am a serial worrier been that way all my life which is of no help with problems such as these.

    I am stressing mainly about the medication either Warfarin or new coag if GP supported. I guess it is the risk of bleeding that is at the centre of my fears and the disruption to my life if is Warfarin.

    But thank you for your words showing a different angle

  • Hi Dave

    Re driving, It was never mentioned by my consultant as an issue to be concerned about. I used to do a fair amount of driving plus 2 flights each month and flecainide never intruded on my work requirements.

    I had an ablation 5 years ago and it cut my AF by 95% plus. I was pretty stressed out at the thought of the ablation. It took 5 hours but I don't remember too much about it apart from the start when the catheter lines were put in. I remember someone saying they had finished the mapping and then a whisper in my ear at the end to say that I might need ' A touch up'.

    You are plied with a pre med relaxant and morphine for pain during the procedure. The drugs during the procedure block the memory of it ( So I was told by my EP before the op). I just thought I had fallen to sleep.

    The stress leading up to the procedure was the worst aspect and I was bone tired the day of the procedure. The pre and post care I had was thorough and personal. My EP gave me a new life and can't thank him enough.

    I can understand your concern about Warfarin but it is to be taken to inhibit thrombic strokes - So pretty good back up/assurance for a long haul flight to Thailand for someone with AF eh?

    On the point about being scared, I was too but ones mental tolerance improves with time. ie experience leads to a bit more confidence that you won't die each time AF rears its ugly head. Just try to be strong.

    Neil

  • Wow what an experience you have been through. Thank you for sharing, and the positive outcome is very encouraging.

  • Hi, I remember the feeling I had when I was diagnosed after a routine check up. I was in complete shock. I still have AF and is likely to be permanent soon. At least you know now and you are able to reduce the stroke risk considerably. I was diagnosed at 46 (now 48) and it made me feel very old all of a sudden.

    Good luck with the drugs, you soon get used to them

  • Thank you northernsoul, we share the same feelings. Keep your chin up and I will start to raise mine

  • Hi, I know your concerns since I have just been placed on warfarin. In his programme, 'Inside Health', BBC Radio4, Mark Porter had as guest Dr Andy Cohen who was extremely positive about the newer anticoagulants. I enclose the transcript. The newer anticoagulants do not have antidotes, as does warfarin (Vit K) but they do have a shorter half-life.

    TRANSCRIPT

    Inside Health, 28th October 2014. M. Porter with A. Cohen on anticoagulants.

    We’ve also had a big response to last week’s item on DIY testing kits designed to help make life easier for people who take the anticoagulant warfarin - used to prevent dangerous clots in around a million people in the UK with underlying problems like an irregular heartbeat or deep vein thrombosis. Warfarin is often referred to as a blood thinner and needs constant monitoring to ensure that it gives the right degree of anticoagulation, so the blood is neither too thin nor too thick. However, the latest generation of anticoagulants - apixaban, dabagitran and rivaroxaban - work differently. They are easier to prescribe and don’t need regular monitoring. And GPs are being encouraged to switch to them but uptake has been slow. Ander Cohen is a consultant vascular physician at Guy’s and St Thomas’s hospitals in London.

    Cohen

    Warfarin thins the blood in a very non-specific way, it depletes a number of clotting factors and the absence of those clotting factors means the blood is thinner. Whereas the new drugs are specific inhibitors of just one clotting factor.

    Porter

    Which means that their mechanism of action is more predictable?

    Cohen

    It is, it is because they’re just acting on one factor and it is because they are absorbed more predictably and it is because they’re not affected by food and they’re – not only is their mode of action predictable but the doses that any one person will require are much more predictable too.

    Porter

    So this is a – potentially – a one size fits all drug that you give, do you have to monitor people on it?

    Cohen

    You don’t have to monitor, and for the majority of the patients the same dose fits all.

    Porter So the advantages, the immediate advantages to the patient and to his or her GP’s surgery or local hospital is that you put them on this drug, it’s the same dose for everybody and you don’t need to get them back in to have regular testing?

    Cohen

    That’s correct.

    Porter

    What about the medical advantages? I mean say we’re using this and the most common application would be for people with irregular heartbeats, atrial fibrillation, they’d normally be on warfarin, is this drug as good as warfarin at protecting them from stroke?

    Cohen

    This drug is actually better than warfarin for protecting them from many types of strokes. So all these drugs have led to a reduction in the most feared complication of anticoagulation, which is bleeding into the brain.

    Porter

    And those are the bleeds that we fear most because they’re the most dangerous type.

    Cohen

    That’s correct. But there are also other bleeds that are very difficult to manage like what we call internal bleeding, bleeding into the abdomen, also bleeding into the bowel and bleeding into the lungs and the urinary tract. And all these things, as a whole, are less common with the newer anticoagulants. The one we have to keep a close eye on is bleeding into the bowel because some of the newer anticoagulants may cause a bit more bowel bleeding but we think we can control that. And when you put all the data together these are actually lifesaving, there’s more than a 10% reduction in deaths in patients taking these compared to the old drugs like warfarin.

    Porter

    The big problem when these drugs first came out was the cost, I mean compared to warfarin they’re incredibly expensive, but NICE – the National Institute for Health and Care Excellence – has approved them, they have said that the benefits they offer are worth the extra money but uptake has been slow, why do you think that is?

    Cohen

    Well I think uptake’s been slow because doctors are generally aware of the constraints on spending with the NHS but there’s a lot more to it than just the cost of the drugs because there’s a cost of monitoring, there’s the cost of getting the patient back to hospital and what we’re finding with the newer anticoagulants patients are being discharged earlier and they’re coming back with complications less frequently. So we see reduced hospitalisation from bleeding and we also see reduced hospitalisation with recurrences.

    Porter

    And presumably I mean there’s the cost to the patient as well, I mean the patient’s not having to take time off work, they’re not having to go to the local GP’s surgery, we’re not having to do the tests and spend time interpreting them. But there’s also a concern about what to do if things go wrong. I know what to do if someone starts bleeding on warfarin or their blood becomes too thin, we can reverse the effect of warfarin, in general practice, simply by giving Vitamin K, I wouldn’t have a clue with these new drugs, is that worrying?

    Cohen

    Well it’s theoretically worrying but in practice it doesn’t seem to be. So I’ll give you an example: If we want to do something about someone bleeding on warfarin we’ll give the coagulation factors and we’ll see if that improves the coagulation within that patient. If someone on one of these newer anticoagulants has bleeding we also give the coagulation factors, so the treatments are very similar.

    Porter

    But what about patients who are already on warfarin, when should they consider switching to these newer drugs, what sort of factors would make you shift somebody across?

    Cohen

    Well this is a very interesting controversial area because much of the guide says if someone’s stable on warfarin or one of the old drugs you don’t need to switch them. I disagree, I think, for instance, that many of the patients in the studies were switched on to the new drugs and got the benefits. I would like to think that patients should all benefit, whether they’re on the old drugs and stable or whether they’re about to be started on a blood thinning drug because the benefits are clear with respect to bleeding, bleeding into the brain and mortality.

    Porter

    Ander Cohen, and listening to that was Margaret McCartney Ander’s obviously very keen on these drugs, he thinks they’re a step forward, do you share his enthusiasm?

    McCartney

    I think they certainly have a role and certainly they are drugs that I would prescribe day to day. I suppose that I’ve got several concerns about them though and part of it is that our populations is changing, so the people that we’re now treating with these anticoagulants, these stroke preventers, are – tend to be older and frailer with lots of other illnesses and diseases and it’s a very difficult judgement I think between risk and benefit for many patients. And there have been studies that have looked at the use of these drugs in older people but what’s been really important is that before the trial has started doctors and patients have sat down together and actually made a decision that for some of these patients it’s going to be too risky to go on to any drug at all. And I think that’s one of the factors in real life that doesn’t always play out when we look at some of the other studies that have been done in very fit healthy people where the decision making process, I think, is a lot easier, it’s a lot clearer where the benefits and risks might lie.

    Porter

    What about this concern about antidotes? As you know we can use Vitamin K if someone’s on too much warfarin, but Ander Cohen really sort of dismissed that, saying from a hospital perspective anyway the treatment is much the same whether you’re bleeding because you’re on too much warfarin or bleeding because you’re on too much of these newer drugs.

    McCartney

    Well I think the problem is that there’s no specific antidote for these newer anticoagulants, unlike warfarin where the specific antidote is Vitamin K. So I think that is something that does concern a lot of GPs.

    Porter

    I mean the feeling I’m getting is that this is unfamiliar territory, it’s not necessarily just the fact they’re very expensive drugs, it’s that we don’t know an awful lot about them, we’re not used to using them.

    McCartney

    I think a bit of caution is not a bad thing and actually in my experience I’ve found that quite a few people who have been on warfarin for a long time, who are stable on it, who are happy to use it, who know their own devil, as it were, want to continue on it rather than changing on to a newer drug and I think that’s very much their choice.

    Porter

    Thank you very much Margaret. And there’s a link to the NICE guidance on the new anticoagulants on our website.

    If there is a health issue you think we should be investigating then please do get in touch - you can e-mail via insidehealth@bbc.co.uk.

    That is it for the current series but we will be back in the New Year. Until then, goodbye.

  • Thanks for this, very encouraging and reassuring news on the new drugs.

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