Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!

Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin

This forum topic is for any thoughts you have on Warfarin..Good..Bad..Ugly..Whatever..!

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Warfarin ! ok now iv just spent a lot of money on the coagu chek xs i hope it will be sods law that dabigatran will be made
available in the uk soon. I would be happy to put the coagu chek in the bin if i could come off the warfarin. my Drs recon its going to be 2 years or more befor its even going to be used here and for people with valve replacements would be even longer, sad i know but good things come to us who waight lol.
have a good day Suzy xx
as i am still getting use to warfarin every other day i have to go bk to my nurse it will take time to settle but hope to have it sorted soon getting there slowly its unfortunate that its something that i will have to get use to the down side is just the food and vitimin k regulating the things that i enjoy alcahol i am not so botherd about still have the odd glass of wine but its still a worrying thought i feel i will need to do some more research on this subject .
it has taken me nearly a year to get my inr setteled constant drs visits. but its getting there. i found it hard to change my diet as i dont really eat meat & i love my greens. im on 7.5 of warfarin daily which seems to be about right for me. im very intrested in getting myself a conga check xs i have had a chat with my warfrain nurse she is going to support me. hope your feeling a bit better now :) x

karen berriman said:
as i am still getting use to warfarin every other day i have to go bk to my nurse it will take time to settle but hope to have it sorted soon getting there slowly its unfortunate that its something that i will have to get use to the down side is just the food and vitimin k regulating the things that i enjoy alcahol i am not so botherd about still have the odd glass of wine but its still a worrying thought i feel i will need to do some more research on this subject .
Hi Tracie!

Sounds like you are getting sorted! I also am on around 7.5 mg daily of warfarin and i eat 1 good helping of greens a day and usually have a glass of wine a night with my main meal..INR has been pretty constant around 2.8 - 3.3 which is in target range..it's only when i hav antibiotics that it goes pear shaped..very pear shaped..so watch out for that one. Anyway sounds like things are good for you..i have just got back from a 4 mile walk with dog..she's tired so must be good for me..(!) although usually only do around 2 miles a day.. but a lovel yda yfor a change deserved a good walk - and walking is VERY good for us! (dog too!)

take care

Graeme

Tracie Reynolds said:
it has taken me nearly a year to get my inr setteled constant drs visits. but its getting there. i found it hard to change my diet as i dont really eat meat & i love my greens. im on 7.5 of warfarin daily which seems to be about right for me. im very intrested in getting myself a conga check xs i have had a chat with my warfrain nurse she is going to support me. hope your feeling a bit better now :) x

karen berriman said:
as i am still getting use to warfarin every other day i have to go bk to my nurse it will take time to settle but hope to have it sorted soon getting there slowly its unfortunate that its something that i will have to get use to the down side is just the food and vitimin k regulating the things that i enjoy alcahol i am not so botherd about still have the odd glass of wine but its still a worrying thought i feel i will need to do some more research on this subject .
I've just invested in a Coaguchek and done my first test (2.5 spot on). I had settled into a routine of going to the surgery every 4 weeks and it's fairly stable, but because of the volume of patients the surgery have suggested that I go to 6 weekly checks and then 8 weekly, apparently some of their older patients only go every 12 weeks. I don't feel safe doing this, I'm not daft I do eat sensibly but inevitably things change - if I'm on holiday I would have a drink every night but when I come back (and find out I've put a couple of pounds on!) I cut it out. I can't cope with not knowing what this is doing to my INR, it struck me that if you knew more about how your body reacted you could have more control. For example if you have a little more alcohol than usual can you balance this out by eating more greens? My nurses says reactions are very individual and not always consistent which seems an even better reason to be able to test yourself.
After reading Graham's experience of finding that his reading was much higher with a finger prick test that venous sample I asked Roche for information on this and they gave me the info below:
INR below 2.5 possible deviation 0.1 - 0.3
INR 2.5 - 4.5 possible deviation 0.5 - 1.0
INR over 4.5 possible deviation 1.0 - 2.0
As you can see the higher the reading the greater the possible deviation.
I'm meeting with my practice nurse to develop a protocol for self management. The surgery say that our PCT will not allow them to prescribe the test strips so I'm buying them for now and campaigning, when PCTs are scrapped there may be some changes.
I'm planning to test every 2 weeks. By the way Roche have got an offer on until Christmas with £100 off so the Coagucheck starter kit (machine, lancet and 6 testing strips) is £299. They are really helpful, even provide a DVD which is much more helpful than reading instructions.
Hey Laura

good post. I got caught out about 2 years ago on antibiotics when i got a 4.5 on the finger prick and on a blood test the same day scored a massive 8.5. Scared the s**t out of me.. The doc and the nurse at my GP said over 5.5 ish the coag pricker is not reliable and he's right..the higher the reading the more unreliable the coag checker gets..BUT..you should not have any worry with any INR reading up to 4.5 -5 or so..that's too high ..so alarm bells would go off anyway - either way.

My advice - but bear in mind everyone is different. It's a bit like the blood pressure monitor i bought 6 months or so after my AD. I got the the stage i was taking my BP every hour or so! Consequently my BP went through the roof with worry..! So. I threw it under the bed where it remained for a year or so then gave it to a friend to use who has diabetes. That was years ago. The only time i l now check my BP is my 3 month visit to the gp or my annual checkup - and it has been spot on 80/120 for years now.

So. Moving onto INR readings. I note your worry about eating different foods every day that can cause different INR reading every day. Yes it can. But frankly, it 'should' not a worry. Your INR is a constantly changing thing and if you try to micro manage it you will end up the same as my BP experience. I have been on warfarin now since April 2003 and whilst only a spring chicken compared with others (one of our members has been on it for over 25 years!) I have become quite comfortable with my testing regime over 7 years which is now 8-12 weeks between testing with a quite stable INR of between 2.8-3.2

Frankly, I don't worry about it and worry about my DAILY diet affecting it.. I also vary my food - and do eat the required greens most days - say for instance in the summer i have a lot of salads and vit k foods - but never repeatedly binge on them..same for alcohol - and if i do have say a dinner party where I might drink more than a glass of wine - i don't run off and check my INR the next day - or say eat a whole advocado followed by a generous helping of spinach...

However if i did this 3 nights in a row i would. Its all about common sense - i think!! Also as I now only checking every 8 -12 weeks or so i have never graduated to the coagchecker..maybe i should but my reasoning is that i would only use it say 12 times a year max! However - for peace of mind i think they are great - but bottom line - yes - your INR will fluctuate a small amout daily - depending on lots of factors most of all your diet. But - i think this is normal - so - dont worry so much about it and don't over test yourself! Hope this makes sense and you don't find my attitude too 'laissez faire'..!

cheers

Graeme

Laura Chapman said:
I've just invested in a Coaguchek and done my first test (2.5 spot on). I had settled into a routine of going to the surgery every 4 weeks and it's fairly stable, but because of the volume of patients the surgery have suggested that I go to 6 weekly checks and then 8 weekly, apparently some of their older patients only go every 12 weeks. I don't feel safe doing this, I'm not daft I do eat sensibly but inevitably things change - if I'm on holiday I would have a drink every night but when I come back (and find out I've put a couple of pounds on!) I cut it out. I can't cope with not knowing what this is doing to my INR, it struck me that if you knew more about how your body reacted you could have more control. For example if you have a little more alcohol than usual can you balance this out by eating more greens? My nurses says reactions are very individual and not always consistent which seems an even better reason to be able to test yourself.
After reading Graham's experience of finding that his reading was much higher with a finger prick test that venous sample I asked Roche for information on this and they gave me the info below:
INR below 2.5 possible deviation 0.1 - 0.3
INR 2.5 - 4.5 possible deviation 0.5 - 1.0
INR over 4.5 possible deviation 1.0 - 2.0
As you can see the higher the reading the greater the possible deviation.
I'm meeting with my practice nurse to develop a protocol for self management. The surgery say that our PCT will not allow them to prescribe the test strips so I'm buying them for now and campaigning, when PCTs are scrapped there may be some changes.
I'm planning to test every 2 weeks. By the way Roche have got an offer on until Christmas with £100 off so the Coagucheck starter kit (machine, lancet and 6 testing strips) is £299. They are really helpful, even provide a DVD which is much more helpful than reading instructions.
I have so many things to ask now I guess from everyone else about Warfarin /coumodin and the blood tests for them.

As most of you already know from my blog/post here I just had my surgery on October 20th, 2010.... and the "start time was 7:22am" as that's when they got me in the door to the O.R. and the last time I had any mention of time till I came too more or less in recovery.

Saturday October 23 was my first time taking the coumodin/warfarin after surgery and the "build up" start pill.

Sunday morning was up to 1.5INR, received the "next dose" Sunday evening and from now on that is when I was instructed to take the coumodin/warfarin does (at dinner time/6pm). I had reacted hugely to the second dose and they had to give me some vitamin k (approximately 1 milliliter) and that got my levels down to the above 2 below 3 range. has everyone had this experience? and does it happen often?

I was also instructed that Monday night take 1 full pill, Tuesday 1/2 pill and then Wednesday 1 full I believe ( so a 2g,1mg,2mg) is this normal? should I use another one of my empty bottles to save the half pills in? to keep them from mixing or rather making a mess of the container?

I did do my reading in house before being released from the hospital and also saw that I am supposed to use an electric shaver from now on.... does anyone have suggestions as to what to get or experience with these that can help me decide which to get?

what side effects have any of you noticed in the time period after taking your does of Warfarin/Coumadin? some times I get chilly before the does is taken or even after and others I feel really warm in an hour or so but I am debating if that is from this or the pain killers.

These are just a few questions clogging my thoughts here on the east coast of the US at 2am Tuesday morning. I know I have more but probably should get back to bed for some much needed sleep.

~ Jonathan
Hey Jonathan

Welcome back! Glad everything went ok? Re your questions...well for a start stop worrying! You are in good hands wiht your docs! Also, its going to take a couple of weeks for your body to get used to warfarin/coudamin..I had to stay in hopital for an extra 4 days after i was ready to be discharged as they could not get my INR stable..no big deal but it takes a while as you tend to jump all over the place initially..what you eat seems to make it very sensitive as well..more so when you first start on it. As for shaving with a electric shaver..thats a bit overprotective...

I have never heard of that or been told that before..a new one on me! I can appreciate why - but all the same I have not been advised that by my docs or even thought about doing it. Interestingly enough if i do cut myself - and i have a few times - or bruised myself - its not as bad as i thought it would be and i normally clot after half an hour or so.. certainly no borderline haemophiliac...

Anyway just take it as it comes..getting into your coudamin regime is going to take a few weeks/months..all scary to you at present but you will get on top of it and after a few month it will become second nature to you..it ain't rocket science!

Get better soon - and don't sneeze!

best

Graeme

as o

Jonathan F Bushey said:
I have so many things to ask now I guess from everyone else about Warfarin /coumodin and the blood tests for them.

As most of you already know from my blog/post here I just had my surgery on October 20th, 2010.... and the "start time was 7:22am" as that's when they got me in the door to the O.R. and the last time I had any mention of time till I came too more or less in recovery.

Saturday October 23 was my first time taking the coumodin/warfarin after surgery and the "build up" start pill.

Sunday morning was up to 1.5INR, received the "next dose" Sunday evening and from now on that is when I was instructed to take the coumodin/warfarin does (at dinner time/6pm). I had reacted hugely to the second dose and they had to give me some vitamin k (approximately 1 milliliter) and that got my levels down to the above 2 below 3 range. has everyone had this experience? and does it happen often?

I was also instructed that Monday night take 1 full pill, Tuesday 1/2 pill and then Wednesday 1 full I believe ( so a 2g,1mg,2mg) is this normal? should I use another one of my empty bottles to save the half pills in? to keep them from mixing or rather making a mess of the container?

I did do my reading in house before being released from the hospital and also saw that I am supposed to use an electric shaver from now on.... does anyone have suggestions as to what to get or experience with these that can help me decide which to get?

what side effects have any of you noticed in the time period after taking your does of Warfarin/Coumadin? some times I get chilly before the does is taken or even after and others I feel really warm in an hour or so but I am debating if that is from this or the pain killers.

These are just a few questions clogging my thoughts here on the east coast of the US at 2am Tuesday morning. I know I have more but probably should get back to bed for some much needed sleep.

~ Jonathan
thanks Graeme.

and ya..... i sneezed last night... thank god for the heart hug pillow when that happened.. I was actually holding it an was sitting up to get out of bed when the sneeze struck me. I noticed that even little smiles and chuckles here and there will "hurt" a little but expected it.

As for the electric razor it was suggested to me by just about everyone of the doctors but hadn't read or spoke to anyone else before they said it. Part of it might be because I didn't shave while in the hospital or just before going into the hospital and the tape and bandages were sticking to the stubble/growth while they were covering over the iv and so on... had a "triple loomis" or something like it in my neck.

My first out of hospital blood test is Thursday and I am pretty sure I will be fine, I haven't changed my eating habits much at all... other than still slowly regaining my appetite from being in the hospital. And they did say if I go back to what I was eating before surgery my body and INR shouldn't over react to the Coumadin.
Hi Johnathan - its such early days for you, concentrate on all the mundane stuff like congratulating yourself on getting in and out of the shower and doing a short walk. I was given an increasing programme starting with 5 mins on my first day home (10 days after surgery in my case) and building up a couple of mins every day. There seems to be quite a variation in response to warfarin between people so I don't think you can say what's 'normal', whatever it takes to get your INR into the range is normal for you. I found that during the first 3 months I needed more and more as I took more exercise and my appetite grew, now it seems to have settled.

The only side effect I've found so far is that my skin is a little sensitive, and some of the creams and potions I used to use now irritate my skin. I had a particularly nasty response to depilatory cream on my legs (sorry guys if this is too much information but there may be some other women out there about to make the same mistake!) because I'd always used it I slathered it on and within minutes I had really sore red legs almost like chemical burns I now patch test anything just in case.

Get plenty of rest - it's absolutely amazing how your body recovers, every day you'll be able to do something you couldn't do the day before. I was looking back at my diary over the first couple of weeks after surgery -I think I may need to do a creative writing course - I remember wondering if I'd make it through, pondering the meaning of life etc and then writing in my diary "carried the chicken from the fridge and put it in the oven" it doesn't quite convey the angst I was feeling but that was a big day!!!


Jonathan F Bushey said:
I have so many things to ask now I guess from everyone else about Warfarin /coumodin and the blood tests for them.

As most of you already know from my blog/post here I just had my surgery on October 20th, 2010.... and the "start time was 7:22am" as that's when they got me in the door to the O.R. and the last time I had any mention of time till I came too more or less in recovery.

Saturday October 23 was my first time taking the coumodin/warfarin after surgery and the "build up" start pill.

Sunday morning was up to 1.5INR, received the "next dose" Sunday evening and from now on that is when I was instructed to take the coumodin/warfarin does (at dinner time/6pm). I had reacted hugely to the second dose and they had to give me some vitamin k (approximately 1 milliliter) and that got my levels down to the above 2 below 3 range. has everyone had this experience? and does it happen often?

I was also instructed that Monday night take 1 full pill, Tuesday 1/2 pill and then Wednesday 1 full I believe ( so a 2g,1mg,2mg) is this normal? should I use another one of my empty bottles to save the half pills in? to keep them from mixing or rather making a mess of the container?

I did do my reading in house before being released from the hospital and also saw that I am supposed to use an electric shaver from now on.... does anyone have suggestions as to what to get or experience with these that can help me decide which to get?

what side effects have any of you noticed in the time period after taking your does of Warfarin/Coumadin? some times I get chilly before the does is taken or even after and others I feel really warm in an hour or so but I am debating if that is from this or the pain killers.

These are just a few questions clogging my thoughts here on the east coast of the US at 2am Tuesday morning. I know I have more but probably should get back to bed for some much needed sleep.

~ Jonathan
Thanks Laura,

Ya I am going to start writing a bit of notes here and there. Noticed a bruise Monday night when I actually was in the bathroom, inner right high, but it seams to be fading away, might be because I hadn't done stairs and stuff for the week i was in the hospital.

I did congratulate myself for picking up the 1/2 gallon of milk on my own and a few other menial tasks here and there so far today.

I was thinking of going for a 5 minute walk, trying to figure out if the weather will hold out for me to do it right now.

I do have hot/cold flashes but they seem to be related to the side effects of the painkillers and happen with in 45 minutes of taking the pill. ( I am for the most part only using 1 pill and it works for me).

I had the drain tubes pulled out Friday or Saturday and then started the Coumadin on saturday so the "wounds" are still slowly healing but the Home visiting nurse was here yesterday and said they were looking good, so just keep cleaning them and covering them with new bandages till told otherwise..

As for coumadin I think I am doing good just following the instructions from the doctor and waiting to see what is said. are there other fruits/juices I may have not seen that are not good for Coumadin/warfarin users?

I thought about it as I had a cup of pure concord Grape Juice
Jonathan, Reading your comments brought back such memories of the difficulties in the time immediate post surgery. I had my surgery in 2007. I wanted to encourage you and say you will get there. Literally take one moment at a time. Also, as Laura indicated rejoice in the small victories, it all adds up and one day you will look back amazed at how strong you've become. It will be so helpful that you have this support site. I so wish I had when I was first going through it all...and know that it helps us to help you and it helps us, still, to speak to others whom had this experience. No one can really understand this unless they've been through it. Be very communicative with your health providers regarding Vitamin K content in your diet, experiences with and questions about Coumadin. These next couple of years you will learn more and more regarding that balance. Dr. Gourmet.com will be helpful for printing out a listing by measurement of Vitamin K amount in foods. This will help you to keep your INR level safe, take some fear out of what you can and can' t eat. This will also help add more variety to your diet as you learn more. I keep a copy of this list in my kitchen, at my sisters homes and it's the first thing I pack when I travel. I've taken the list with me to restaurants. It also helps your family, if you're visiting to know if they are making a meal that you can partake of or not. I wish you peace and strength.

Laura Chapman said:
Hi Johnathan - its such early days for you, concentrate on all the mundane stuff like congratulating yourself on getting in and out of the shower and doing a short walk. I was given an increasing programme starting with 5 mins on my first day home (10 days after surgery in my case) and building up a couple of mins every day. There seems to be quite a variation in response to warfarin between people so I don't think you can say what's 'normal', whatever it takes to get your INR into the range is normal for you. I found that during the first 3 months I needed more and more as I took more exercise and my appetite grew, now it seems to have settled.

The only side effect I've found so far is that my skin is a little sensitive, and some of the creams and potions I used to use now irritate my skin. I had a particularly nasty response to depilatory cream on my legs (sorry guys if this is too much information but there may be some other women out there about to make the same mistake!) because I'd always used it I slathered it on and within minutes I had really sore red legs almost like chemical burns I now patch test anything just in case.

Get plenty of rest - it's absolutely amazing how your body recovers, every day you'll be able to do something you couldn't do the day before. I was looking back at my diary over the first couple of weeks after surgery -I think I may need to do a creative writing course - I remember wondering if I'd make it through, pondering the meaning of life etc and then writing in my diary "carried the chicken from the fridge and put it in the oven" it doesn't quite convey the angst I was feeling but that was a big day!!!


Jonathan F Bushey said:
I have so many things to ask now I guess from everyone else about Warfarin /coumodin and the blood tests for them.

As most of you already know from my blog/post here I just had my surgery on October 20th, 2010.... and the "start time was 7:22am" as that's when they got me in the door to the O.R. and the last time I had any mention of time till I came too more or less in recovery.

Saturday October 23 was my first time taking the coumodin/warfarin after surgery and the "build up" start pill.

Sunday morning was up to 1.5INR, received the "next dose" Sunday evening and from now on that is when I was instructed to take the coumodin/warfarin does (at dinner time/6pm). I had reacted hugely to the second dose and they had to give me some vitamin k (approximately 1 milliliter) and that got my levels down to the above 2 below 3 range. has everyone had this experience? and does it happen often?

I was also instructed that Monday night take 1 full pill, Tuesday 1/2 pill and then Wednesday 1 full I believe ( so a 2g,1mg,2mg) is this normal? should I use another one of my empty bottles to save the half pills in? to keep them from mixing or rather making a mess of the container?

I did do my reading in house before being released from the hospital and also saw that I am supposed to use an electric shaver from now on.... does anyone have suggestions as to what to get or experience with these that can help me decide which to get?

what side effects have any of you noticed in the time period after taking your does of Warfarin/Coumadin? some times I get chilly before the does is taken or even after and others I feel really warm in an hour or so but I am debating if that is from this or the pain killers.

These are just a few questions clogging my thoughts here on the east coast of the US at 2am Tuesday morning. I know I have more but probably should get back to bed for some much needed sleep.

~ Jonathan

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