Found out I have AF on Warfarin worried about it all

[Christo4]

Christo4

[Beancounter Volunteer]

Hi Christo

Well you have come to the right place, because everyone here has AF, and many of us are on warfarin.

First the warfarin, honestly it's easy peasy seldom any side effects, pain in the butt having blood tests, but apart from that it's my best friend because it reduces that horrid risk of stroke we all have, and I for one am really scared of ending up drooling in some corner.

Now the AF, well sorry to hear you have been diagnosed, but there are as many different types as there are people, are you having episodes?, or perisistent AF (like me I'm in AF 24/7) and what sort of symptoms are you getting?

Have you seen an EP, etc etc, basically we are here to help and share experiences, just let us know what you want.

Worried? Gosh you're doing better than me, when I was diagnosed I thought I was going to die, literally scared me out of my mind. BUT forums like this and the AFA website which has some fantastic information have been my saviour.

Truth is? AF is not life threatening, as someone says it just feels that way at the time

So ask away, you are amongst friends and we have just about all been there

Take care

Ian

[Christo4 in reply to Beancounter]

Christo4

[hondajazz in reply to Beancounter]

Hi Beancounter, I was pretty much like Christo over 3 years ago when i was diagnosed with AF and I was frightened as you say because no one told me about it . I was just given Digoxin to take once a day and this has kept mine under control .Then last year i was invited to my Doctors surgery to meet a research doctor who told me that all AF patients were now being recommended to take warfarin to avert strokes etc. I had had to take warfarin many years ago after a Coronary Artery Bypass so i was aware of the contstraint when taking it ie blood tests etc but what i have since found to my cost is that if you have to have antibiotics or steroids for anything that this will affect your warfarin levels. I am not too sure what other peoples experiences have been with regard to this happening to them or being given this information but I think every one should be aware of it . I am also Diabetic and on Insulin this is also affected by all of the previous. i have recently gone through a bad chest infection that hospitalised me so you can imagine the struggle i am having trying to keep my blood ranges on target. My Warfarin clinic at the local hospital are very supportive though and i can ring them or go and visit any time i am unsure of anything and they also check my blood sample on a reader which is not unlike the Insulin finger tip checker,which just requires a finger prick and so gives your veins a rest from contstant blood taking. Another problem I found while in hospital was other doctors changing tablets , doses etc. I was discahrged home without the Digoxin because one doctor thought my heart was too slow? leaving me without any regulator at all . I contacted my doctor immediately and he prescribed it again in a smaller dose and it is to be reviewed again soon. I feel a lot better having joined this group to be able to read and swap sensible down to earth facts with others who understand what i am talking about.

[Beancounter Volunteer in reply to hondajazz]

Hi Hondajazz and welcome

Yes there are lots of posts about warfarin, and the effects of antibiotics and other drugs, and even viral infections etc. If you would like to start a question on this, then I suggest clicking on Question at the top and "new"

But welcome to the group and feel free to comment on anything, we are all here to support

Be well

Ian

[Christo4]

Thank you for being in touch yes, thought..... was I going to die ! It's a mine field about this V K in food I go for my blood test this Monday May learn more then,it's on my mind all the time even dream about it, not so bad now only found out four days ago nice to be in touch with someone who has the same thing as me!

[Christo4]

Christo 4

What about driving is that ok. Not been told anything about that

[BobD Volunteer]

Hi Christo and let me agree with Ian on everything he said. If you are not passing out with AF and it does not affect your concentration or ability to drive safely then there is nothing to stop you driving BUT you must advise DVLA (if you are in UK) and your insurance company. DVLA have a form to fill in and that is it. It should not affect your insurance but if you do not tell them then they can crawl out of any claims since you have not disclosed any material facts about you. There is a threatened £1000 fine from DVLA for not disclosing by the way (if they ever find out).

Bob

[Christo4 in reply to BobD]

Thank you for that

[Aprilryan in reply to BobD]

Hi Bob interesting about DVLA. I have just looked on the website under arrhythmia and it says DVLA do not have to be informed unless there are distracting/disabling symptons (for car drivers that is, lorries are different) what do you think ?

[BobD Volunteer in reply to Aprilryan]

Oh this is so typical. Under advice to medical practitioners it says that but under advice to drivers it says you must report. That is unless they changed in the last few months. I was caught out by that some time ago. The point is that doctors do not need to report which they do with some conditions but the patient must..

Bob

[Aprilryan in reply to BobD]

Hi Bob _Forget my last comment I found I was looking on the medical professional page

[Beancounter Volunteer]

Christo ignore Vit K just eat your usual diet and dont change it, they will adjust dosage to your diet

Ian

[Christo4 in reply to Beancounter]

Will do

[Christo4 in reply to Beancounter]

Do you know anything about bleeding my Dr told me about nose & bleeding gums and also to take care with cooking knives ! Do many people have nose bleeds etc while on warfarin ?

[meadfoot]

Hi Christo

Sorry to hear you are feeling so worried. If it helps all of us on the forum have been where you are now, scared, worried, confused, wondering what the impact on our lives will be and what the future holds.

The good news is you will feel better by using this forum for support. Also reading all you can on the AFA website about AF and anticoagulation (loads of leaflets there which give clear information) will also help you.

Regarding Warfarin, it is an excellent medication and we all know reducing the risk of stroke in AF is number one priority. Believe me there are still so many AF patients being prescribed aspirin for stroke risk which is useless for this particular condition and many eligible patients not getting any anticoagulation so you are on the best route.

If you cant tolerate Warfarin there are new novel anticoagulants - Dabigatran, Rivaoxaban and Apixaban, which can be prescribed. All have plusses and minuses as with every medication, I take Rivaoxaban.

Regarding driving. Arrhythmia's are listed as notifiable conditions on the DVLA website. There is a declaration form on line to complete and submit. Have a look at their website. It also says insurance company should be informed. Better safe than sorry as it states that not informing DVLA can bring a £1000 fine. I assume an insurance company would use it not to pay out in the case of an accident if they could do.

Good luck and be well.

Regards

Dee.

[Bryonny in reply to meadfoot]

Dear Meadfoot, your reply really interested me. No one has advised me about the need to inform the DVLA. I am struggling to make an appointment to see a health care professional to get more advice about my condition , so far I 've found out more from the AFA and it's members.

[rosyG]

All excellent advice above- I think it's a good idea to know some of the very high Vit K greens like kale etc because it's hard to keep to roughly the same daily amounts otherwise. I made lists of rough equivalents when starting on Warfarin in August and have found that is a useful way to get some idea, without worrying too much.

You will find people give good advice on this forum and it's really helpful when you are first diagnosed. Good luck!

[Christo4]

Great to be in touch with you all I feel better already. went shopping this morning for our weekly shop kept thinking should I buy this veg etc etc. Do our Drs surgery have a AF nurse I could see ?

[rosyG]

Some do but not all- the AF Association have got excellent leaflets about all sorts of things including Vit K and warfarin- also there are some good web-sites - if you Google "Vit K content of (whatever food you are thinking of) " you will find some good resources/

[TheScottie]

Hi Christo 4, welcome to the AF Forum. Everyone here is very friendly and you will get some good, thoughtful and helpful advice. I, too, have be recently diagnosed with PAF and am navigating my way through how to live with it and manage the meds. My advice - take a day at a time, lean on the people around you who can support you, try to stay calm -as others have said, it won't kill you and the warfarin is already beginning to feel a bit like a friend. It takes time to adjust to a new challenge in life, but you will adjust and I am hopeful that with AF I can still enjoy a busy, full and interesting life. You will too. Go well.

[Christo4]

Rosy& TheScotte

Thank you for your post so pleased I have found you all. It's a great help its true warfarin does feel like a friend each time I take them I feel it's helping me ! How are you both keeping ? Does it or can it take long to get the right amount of warfarin ?

[rosyG in reply to Christo4]

No I think it was about 3-4 weeks. If you feel able to self test, once used to the monitoring at the clinic, it is very good as you can test more frequently so you keep in range. I was very steady for 3 months and then needed to adjust last month- easily sorted out if you can self test. The machine is expensive- £299 and different practices argue over amount of test strips you can have, but our CCG agree it is cost effective. Hope you are coping well- it takes a little time to realise it is not going to be too difficult to deal with!

[Christo4 in reply to rosyG]

I'm I right in thinking you can self test does that mean you can change what med you are having ?

[Hidden]

Hi Christo, welcome to the Forum. Everyone here is unbelievably friendly and supportive and it really helps. We all know how alone and afraid you feel when you first get this thing. I started on Warfarin before Christmas and I seem to be in range now, it's taken longer than I thought but in reality not that long I guess, especially as I forgot a tablet (have had to set all sorts of alarms to remind myself). I was told not to eat/drink cranberries, that is the only thing I've given up...

Lis

[Christo4 in reply to Hidden]

Lis

How much med are you taking if you do mind me asking, I'm on 3mg a day to start with, good to be in touch with you all. I keep asking ? All the time !

[Hidden in reply to Christo4]

8.5mg Christo, but I'm a big girl... I guess if this diet succeeds I'll be smaller and the dose will be less as well. And ask away! We'll all help if we can

Lis

[dedeottie in reply to Hidden]

Actually losing weight won't necessarily make any difference to how much warfarin. I need 11 mg a day and am 9 stone which is ok for 5' 3. I was told that we inherit our biological reaction to warfarin but it doesn't matter how much you need to Maintain the right level. It just means your body metabolized it faster than someone on a low dose. At least that's one good excuse for eating a cream cake! Xx

[Hidden in reply to dedeottie]

Thanks! I didn't know that... Lovely to have an excuse for a cream cake

[Beancounter Volunteer in reply to Christo4]

Hi Christo

Don't get hung up on the dosage, it doesn't matter what dosage you take ,it matters what INR you achieve, some will take 4mg to get to that (or less) and some 12 mg, it's only the effect that counts not how much you take.

It's not poisonous the more you take I promise you.

Ian

[rosyG in reply to Christo4]

I think it's standard to be started on 3mg- I seem to need 4-5mg and , when dropped out of range last month , had two day with 6mg but that raised INR a little too far- now steady again at 4-5mg. Everyone has different amounts but I have found my INR does change with food intake of Vit K so I try to have rough equivalents each day.

[Christo4]

Thank you for that, it seems all ? Until I learn about this thing.