Diagnosed with PAF a year ago. On a cocktail of Aspirin,Bisoprolol and Flecainide.After much discussions with Cardiologist have been referred to Warfarin clinic.
I am now concerned about my lifestyle and eating. I eat mainly plants have no fixed meal times just graze on fruit and vegetables this has been my way from being a child..
I am quite athletic and take a lot of bumps and grazes.
Travel and trek in far off places winching canoes through beaver dams at times.
Also run my own small business which is physical.
Please can anyone advise me, after pushing for Warfarin [ and really getting up my GP/Cardiologist noses] am I going to be able to cope with it.
Oh I forgot to mention 'Alcohol' plays a part in my busy lifestyle...
Your comments will be welcome. Regards...C
P.S I hadn't realized the implications of taking Warfarin when I was in discussions with medics only since reading more on this forum.
Have you thought of taking one of new meds instead of warfarin....you don't need the constant monitoring ....I lead your kind of life style and don't ever think about what I eat...and had no probs yet
hello Vd11.Thank you for your reply...regarding an alternative to warfarin the cardiologist informed me that warfarin was the only anti-coag that had an antidote and at the time I thought that was the best option ...I have my first appointment at the warfarin clinic soon I will mention my concerns...Thank you for your suggestion,C
What he said is true but my doc said they have the means to sort it is...if not a specific antidote...warfarin is a pain to keep up with and the alternative is worth the small risk...you will get no objective advice at warfarin clinic.....they want to keep their jobs...the other meds don't need those staff....
Hi Vd11...Thank you for getting back to me again...I pushed so hard to be put on Warfarin and didn't have a clue about it...When travelling sometimes just eating the plants and herbs growing at the side of the roads or in farmers fields or the vine yards..i am trying to kid myself that I can cope with it but deep down I don't believe I can...It is difficult enough being on the toxic cocktail of meds and sometimes I just think of discounting with them all...I will call the hospital today and speak about my concerns...There are quite a few alternatives to choose from I believe ...I will look up the side effects and contra-indications...Thank you again...C
Have you thought of taking one of new meds instead of warfarin....you don't need the constant monitoring ....I lead your kind of life style and don't ever think about what I eat...and had no probs yet
At £299 it's not a bad price for self testing, (you don't pay VAT!) and you will also have to buy the test strips and lancets unless your local Health Authority will pay for them, it would seem that some do and some don't. Talk to your anti-coag clinic most are very happy to help you self test, you simply ring through your INR results and they tell you what dosage to change to, after a while you will be comfortable doing it yourself.
You are going to have to get used to the bruising by the sound of it, the worst "incident" I had on warfarin was a dog bite on my derriere on holiday, and I had literally a black and blue cheek for nearly ten days but no lasting damage.
Re diet, it's the same again, its' the change of diet that's hard to cope with not the diet itself, your diet sounds really healthy so I doubt that will be too much of a problem. The alcohol? well I leave that to you, I am almost Teetotal in the UK, but on holiday it was probably two beers during the day and two-three glasses of Medoc each evening, and I had no problems whatsoever.
I think you'll find your way through it fairly comfortably.
Hi Ian, Thank you for the link for the machine...I will certainly look into that,..
Regarding my diet it sounds very healthy but it is not consistent and I can go hours without thinking about food and then go a couple of days eating nothing but boiled rice...
In a couple of weeks doing France, Italy and Tuscany in camper with friends to the remotest of places how am I going to manage the Warfarin...The side effects of the other meds are debilitating as you may remember but I am persevering there... I am quite frightened of the consequences and I know my limitations what I can do and what I cant and a regular food routine it a big one...
So sorry about your bite on the 'butt' maybe you should try turning the other cheek next time...lol
Take care and thank you as always for your advice..C
It is possible to live on Warfarin without too much hassle. I have been taking it for about 2 years, and am monitored for the INR level at my surgery (pinprick on finger and result of reading in numbers). For me I have to avoid broccoli and too much greenery in my diet. Alcohol can sometimes be a trigger for fibrillations, so usually dilute wine with lemonade or similar. No problems other than regular monitoring, but once that has reached required level, testing can be reduced to once a month or longer intervals. Hope this helps a bit.
Very good luck, and hope you feel better soon.
Carrie
• in reply to
Hi Carrie,It is so very reassuring to hear your comments and makes me think what is so special about me that I am not going to be able to cope...
Don't laugh at this but I eat broccoli raw as I do all my food even for breakfast ...I was a member of the raw food society for years ...but if that how its got to be and the alternative is having a stroke then I will have to get my act together...
Please don't worry, carry on with the same diet and they will work out the warfarin around you. To start with you are tested quite frequent, but that is only to get it right, I go 6 weeks in between visits, it's only a finger prick and I am in and out in 15 minutes. Apart from broccoli, (which I only have a little) nothing has changed. Good luck, Wendy.
Hi Wendy,6 weeks is not to bad I think I can manage that,just...I don't really know as yet what form this medication comes in whether it is a tablet or a liquid I seem to remember reading somewhere that it has to be kept refrigerated... How do people travelling manage if that is correct but I am sure they must do....Thank you Wendy for taking the time to reply to my question....I do fully appreciate the support.C
Pleased to be of help. Warfarin comes in tablets, so no need for refrigeration. If I go away I just continue to take the same dose, just have a test just before you go, as I am unlikely to be away more than 6 weeks, this is not a problem either, though I am sure you could get it tested. I am personally not in favour of a testing machine, as I would keep testing and get a bit obsessive about it. I just want to take the tablets and get on with my life without thinking too much about it! Wendy
Wendy thank you and it is good to know that you are managing on the warfarin and maybe its not the demon that I believe it to be....I have some thinking and researching to do now these next few days to clear my head and to take everyone's advice and different experiences on board...my very nature is spontaneity and routine don't exist in my life..I am rather obsessive also ,my left hand is almost permanently fixed to my pulse rate on my right wrist even in a check out queue..lol C...
Hello again Offcut,Yes there will be adhesions formed now. What about the other arm or is the vein not protruding enough. I thought the blood testing was a pin prick in a finger...take care.C
I have been on warfarin for 18 months I eat normal meals go out for a couple of pints twice a week I only go to the clinic every 3 months fingers crossed it remains so but if u look after yourself and take care it could work for u as it does for me I do anything I want within my abilities I have c.o.p.d as well im on digoxin which seems to work quite well but cant take bisoprolol it makes me breathless
I am on Digoxin and Sotalol 80mg twice a day they put me on 3 times a day to start with but when my fingers went blue they dropped me down but I am still breathless. Bisprolol made me breathless too but seemed to fail with me every 3 months or so. I am usually 6 weeks between tests but at the moment I am every 7 to 14 days as My INR has gone irregular my last 4 tests were 3.4, 3.8, 2.1, 3.7 in just over a month. I keep being asked If I have COPD but I cannot get a committed answer from anyone.
Hi,This Warfarin gets more disconcerting every day. Somehow or the other I thought it was just a pin prick not full blown drawing of blood from vein !!!
I also get breathless only going up an incline not on a level or when swimming or any other activity....keep well.C
Hi Caromia - it was the bisoprolol that made me breathless when walking up an incline - but not on the level - now changed to diltiazem and warfarin -much better.
Hi Marion 62...I have made a note of the drug Diltiazem didn't know whether it was one of the drugs I was taking or the PAF that was making me breathless but I am now beginning to think it could be the Bisoprolol..C
Hi tullowman,Everyone seems to be different. What is one mans meat is another mans poison..Ahh looking after myself,.I am good at looking after other people but not as strict with myself ...What is c.o.p.d ???
Chronic obstructive pulmonary disease (COPD), also known as chronic obstructive lung disease (COLD), chronic obstructive airway disease (COAD), chronic airflow limitation (CAL) and chronic obstructive respiratory disease (CORD), is a lung disease defined by persistently poor airflow as a result of breakdown of lung tissue (known as emphysema) and dysfunction of the small airways.[1] It typically worsens over time.[1] Primary symptoms include: shortness of breath, cough, and sputum production.
My O2 at rest in an upright position can be 92/95% but when lying drops to 80/85% and will drop below 80% with mild exercise very quickly. I do have Pulmonary fibrosis, Pluresy, Asthma and a Paralysed Diaphragm. In the winter months I can be gasping for breath with a 7 step stride to my car.
I am asymptomatic in my permanent AF condition. My age is 59, and my doctor and Cardiologist both agree that I do not require Warfarin as my risk level is low, that said, I have been on Warfarin when I was first diagnosed with AF some 3.5 years ago, but for now, I'm on aspirin. I have tried to move onto one of the new types of blood thinners with no success, mainly due to the high cost of the new drugs. Even though I found it difficult to keep my INR levels in the appropriate levels, my doctor says that I would need to be outside the desired range for about 60% of the time.
My belief is that it is down purely to cost, and I think the doctors are driven by this perhaps more than the health of their patients.
I would agree in some part especially when I see you are on aspirin. Unless there is another condition for which you are taking this you are taking something which is of no value in stroke prevention for patients with AF yet still has the ability to harm. i e cause stomach bleeding. Sadly too many doctors are still stuck in the idea that it is a good drug for everybody.
I am 59 and asymptomatic with permament AF, so we are very comparable. I was diagnosed in Nov 12 after an attack. but almost certainly have been permament for 5 years prior to that.
I am currently on Diltiazem and Warfarin, the diliazem appears not to have any effect at all, certainly does not lower my heart rate and at the last meeting with the Cardio he said I can come off warfarin if I want, I thanked him and said I think I'd prefer to stay one as a stroke really scares me, and his reply was "I don't blame you and I understand". I do take aspirin as well, but that's due to a high calcium count in the heart so not for anti-coagilation reasons.
I would ask them both to re-consider their decision, in my view (and I recognise this is a very personal one) and why not go back on warfarin if it's a cost inhibitor?
It is possible to monitor your own warfarin level, I have been doing it for the last 10 years using CoaguChek a machine made by Roche Diagnostics, which takes a reading using a pinprick to the finger. It is as though I have been given an extra pair of legs with the freedom it gives me, i can travel with impunity knowing i dont have to think about finding a clinic. My warfarin can be tricky I have to take 13 mgs a day to stay within the 2.5 - 3.5 recommended for artificial mitral valve people like myself. And with afib, it is necessary to be prudent. However, if you are going to use this machine you need to understand how warfarin works and the rate at which it reacts to lowering or raising your dose. If you are in the slightest bit nervous about it, don't use it, you are taking on a big responsibility. But if you are willing to give it a try, it is a joy!
Thank you all for your responses.I attend the Warfarin clinic on Friday but have to be honest and admit to not feeling able to cope with the Warfarin and all it entails..
I am having such great difficulty coping with the medication that l am on and all there side effects and the knowledge that there would be more still with the Warfarin...
It's so very confused to be told we cannot find anything wrong with your heart and you are so very fit BUT you have AF....and then to be prescribed this cocktail of drugs...I am the type of person who could not bring herself to ask anyone for the time if l went without my watch so death is preferable to a stroke..I apologize if l sound gloomy..but l know you will all understand....C
i also am confused and fed up with it all, I have always kept myself fit and i also live mainly on vegetables (never eat red meat) yes life certainly isn’t playing fair that’s for sure. i am a keen cyclist and have done several long distant rides since taking warfarin and flecainide even in all that heat we had and had no problems. it is really hard to get your head around it all. every medical i had prior to all this, i was told my heart is strong and healthy ??? so this as hit me like a ton of bricks’ hate taking tablets of any form. I am finding it hard to make the right chooses when everyone as different ideas. Plus we are all so different. i had be told that my chad score is 0 and I am a low risk so I can come off warfarin at my next appointment with my doctor who is a professor’ so he should know best ? yet I would prefer to stay on warfarin and ease off on the flecainide at least i would know one way or another if I do actually suffer with afib or was it just over doing it in the gym with a new instructor who put me through a hard session. I know how you are feeling caromia but we must keep strong. I keep being told that afib as only been recognize in the last twenty years or so. research is coming on strong for sorting it out
Keep well
ps would love to have a bash at canoeing sounds great fun
Hello llamudos,yes so very confusing when told how fit and healthy you are.As there has only been one attack that required Hospitalization a year ago my cardiologist is not certain I have PAF and because I don't take myself to A&E whenever I have a flutter it has not been seen again.. If I did this I would be admitted to Hospital and as you know that would affect my Insurance premiums at renewal time.
My chad score is a 2 and a 0....I for my age and 1 for my gender. I much prefer taking homeopathic medication than conventional medicine my body is very sensitive to these drugs and make me feel so "not with it"
I attended the Warfarin clinic today and feel as though I have to give it a go but its going to be difficult for me as there are times I don't know where I am from one week to the next...
RE:Canada It was a 3 day day trek mostly on foot and canoe to get to Grey Owls Cabin putting supplies up in trees away from the Bears. We had a Shaman guide with us. Must admit my heart did do a turn when he said don't be concerned about the Bear droppings ....only if they are steaming....lol
Can I just gently challenge you on the "warfarin and all it entails" The great majority of us have no side effects with warfarin, make no changes to our diet, and once we are settled on our INR (and yes that takes a little while) have a blood test once a month or more infrequently simply to check our INR. Once settled my INR did not even change during a French holiday with too much wine and probably too much rich food as well.
All of us have been there with the side effects to the other drugs, the frustrations and the sheer lack of knowledge and of course the lack of certainty about what will happen. But as you say, and like you I am scared stiff of a stroke and being incapacitated but still surviving. I willingly take the very small amount of blood testing and a couple of pills a day to avoid that.
So I understand the gloomy, I have certainly been there, but honestly you will come out the other side, and once settled on warfarin really wonder what all the fuss is about
Visited Warfarin clinic today and have the tablets here on my desk...It didn't sound as daunting as I thought it was going to be...just have to cut down on the bucket full of raw broccoli but not give it up all together.
The only problem for me is going to be the regulating and the weekly visits to begin with. I was discouraged from using any other blood thinner because of the antidote risk. When I am out of the UK I am miles away from any Hospital or GP.So In a week or two I will take a look at testing my own blood like you do...
I do apologize Ian for my seemingly increasing outbursts of histrionics. I have faith so don't worry and thank you for your kind response.C
Hi Caromia. I do understand all you say and feel and do be honest, nine or so years ago I didn't want to go on warfarin either but these day I never think about it. I am down to testing every 84 days and my dose is the same now as has always been once stable and I do hope you have similar experience.
I suspect that many of us are wary of the drug due to the "rat poison " tag and the joke is they haven't used it for that for many years according to a rodent operative I once met on a chicken farm. Talk about give a dog a bad name!
Thank you Bob I have respected your responses and guidance since joining this forum all those months ago........When I couldn't even spell Atrial Fribullation...Thank you my friend...C
I have been on warfarin now for 18 months and found it a nightmare to get it regular between 2 and 3 INR. It meant going to have my blood tested almost weekly. So I decided to buy my own INR monitor - cost £299. all other costs met by surgery. Its so much better and my understanding of what creates it to go up and down has improved to the point that I test once a fortnight or 3 weeks now and no longer have the inconvenience of attending a clinic. Please remember the effect of antibiotics is quite dramatic on this medication as are green veg. Best of luck. Beano 11
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