Reassurance : Well, am having what... - Atrial Fibrillati...

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Reassurance

Lindaj754 profile image
24 Replies

Well, am having what could be described as a “Kleenex”day!

My gp has come to the conclusion that I am intolerant of all the new anticoagulant meds. He has written letter to hospital anti.coagulation clinic for warfarin. Needless to say this has thrown me a bit and am quite upset as I hear some horrible things about warfarin. It certainly feels more life changing/restricting.

Unfortunately come in same week as my daughter and family told me they are being posted to Washington for two years!

Feeling sorry for myself and in need of words of wisdom from you good people

Thanks

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Lindaj754 profile image
Lindaj754
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24 Replies
jeanjeannie50 profile image
jeanjeannie50

I've taken Warfarin for many years, as have many others on this forum. The only thing for me is I take it mid breakfast as I have a very sensitive stomach and it makes it sore if I take it when most others do, which is at night.

Would much rather take this old and trusted remedy than the newer ones, no one knows yet what effect long term use of these will have on people.

Jean

Lindaj754 profile image
Lindaj754 in reply tojeanjeannie50

Thanks. I really needed to hear this today

Paulbounce profile image
Paulbounce

I can understand your “Kleenex”day Linda hearing all that news.

Warfarin is one of the most tried and tested anticoagulant's there is. You'll be fine taking it I'm sure. If your worry comes from reading things online don't let it. Regarding any illness / medication the negatives are always posted. The positives don't seem to be mentioned so much - that's the modern day internet for you ;-)

Of course you'll miss your daughter if she is being posted away from you. However with modern tec these days you'll be able to keep in touch. The bond won't be lost at all - in fact I bet it will get stronger.

One of my lifes regrets is not having children. You are very lucky to have a family you care for - and care for you. Of course you'll miss her but I guess it's part of having kids as they get older and make their own way in life. It's part and parcel of being a parent.

You'll be fine on warfarin and 2 years will pass in the blink of an eye.

Now put the kleenex away and look forward to hearing about how your family are getting on in Washington. I think it will be good news all round.

You'll see ;-)

Paul

Lindaj754 profile image
Lindaj754 in reply toPaulbounce

Paul thank you. You have a sweet heart.

meadfoot profile image
meadfoot

Hi Linda

Many people swear by warfarin and wouldn’t want to change to one of the newer anticoagulants. It’s been around for years and seems to be tolerated well. I realise it seems more restrictive with testing ongoing etc but you will get used to that.

With regard to your family moving well that’s a big blow so little wonder you are feeling teary. I hope you have other family and friends in the vicinity and hopeful you can visit your family in their new location. Look forward, all will be well. In the meantime a few tears will help get your emotions out and is no bad thing. Best wishes. X

Lindaj754 profile image
Lindaj754 in reply tomeadfoot

Thanks for kind thoughts

Lindaj754 profile image
Lindaj754

Thank you for your kind words

Ianc2 profile image
Ianc2

Hi Lindaj

I have been on warfarin for 6 years, get a blood test every 8 weeks or so. If you wish you can buy your own test device and test strips and test yourself at home. Testing is just a pinprick and only takes a few minutes.

Lindaj754 profile image
Lindaj754 in reply toIanc2

Thank you for this

Cavalierrubie profile image
Cavalierrubie

I agree with Jean's post. I was intolerant of all the new drugs. The medical profession are very experienced in Warfarin as its been around for 50 years or so. One doctor told me he thought it was the best one to take. Some people have been on it for over 20 years so I think that speaks volumes. It does at times upset my stomach, so I always eat when taking it and have to take an antacid. It is the best, and in my opinion the safest one for me. Don't worry you will be fine.

Lindaj754 profile image
Lindaj754 in reply toCavalierrubie

Thanks for this encouragement

Cavalierrubie profile image
Cavalierrubie in reply toLindaj754

Your welcome - just a little help from your friends!

Fruitcake100 profile image
Fruitcake100

Don't worry about warfarin, I have been on it for years, traveled the world on it with no problems. You get your INR done regularly which gives you a chance to chat to the nurse about any problems. You can also buy your own INR checking machine if it is inconvenient to see a nurse.

I have been through the other problem too, my three children all left home after uni and ended up living on three different continents, Australia, Northern Canada and Ecuador. I felt soo unhappy at one stage but you do get used to it and being Teck friendly helps, go on a course to learn everything you can do. I talk to mine at least once a week, more often than that when they have time, in fact i chatter on Whats app video to them far more often than many of my friends talk to their children. Visiting is also great fun and so much more special. I know it is very hard but try to think positively and keep busy with your own life. Good luck.

Lindaj754 profile image
Lindaj754 in reply toFruitcake100

Thanks. This helps a lot

TenorJK profile image
TenorJK

Hi there, I couldn’t tolerate any of the new anti coagulants, I had severe kidney problems and infections I tried two and after Exactly 2 weeks started the horrible side effects, with each. I went onto Warfarin a few years ago and am fine, it’s worth the checks at the Drs even if it’s a bit of a bore at least you get the reassurance that everything is Ok. Jo.

Lindaj754 profile image
Lindaj754

Thanks for this reassurance

Buffafly profile image
Buffafly

There was recent post from someone who was determined to keep taking warfarin so I think that says it all 💜

Lindaj754 profile image
Lindaj754 in reply toBuffafly

Thanks

irene75359 profile image
irene75359

Please don't worry. I have never had any problems with warfarin. If you can invest in your own Coaguchek testing machine, so much the better. Then you can keep control yourself. I answered Nemisis earlier in today's posts about warfarin, have a look, it might help.

My reaction would be just like yours if either of my daughters went away for two years, and contrary to what may be thought, we are not in each other's pockets all the time. We just love being near. It is amazing how quickly two years will pass, embrace Zoom, WhatsApp, and keep in touch. And with luck, you may be able to visit; Washington is lovely!

Lindaj754 profile image
Lindaj754 in reply toirene75359

Thanks for your understanding

If you think that Warfarin will restrict you ....then it certainly will. My advice is to consult your GP about self testing. If you can afford to buy a Coaguchek XS device ( Google it, made by Roche).

The last I heard you could buy it interest free over 12 months.

You prick your finger drop blood onto test strip the device will give you an INR value, pass that to your GP who will process it on their computer system and get back to you with a new dose and the next test date. I use mine at home all the time and when I fly to Australia it comes with me.

So with the folk going the States you could go and visit and take this with you.

I'm working at moment but will write more when y get home.

John

Lindaj754 profile image
Lindaj754 in reply to

Thank you for this advice

Hi Lindaj754,

To continue from yesterday ........... I have been on Warfarin since January 2010 ( I was 65 at the time and this Sept I hit 76) and self testing with my Coaguchek device since April 2010 ... I have not had a problem at all.

There are no restrictions at all with this drug, life continues, its all about how you approach things.

With your own device you are as much master of the universe as if you were taking the NOACs that you can't tolerate, or as if you were just normal.

To start with your GP will probably arrange blood tests (unless its already been done). The purpose of this is to establish your 'Theraputic Range' expressed as a set of values. In most cases the range will be 2.0 to 3.0. It will also establish a Target INR. (INR means International Normalised Ratio) - my Target INR is 2.5.

People with other medical conditions or implanted cardiac devices may well have a slightly different INR range and target.

In most cases a GP surgery will have access to an anticoagulation clinic. My surgery is quite big and it has its clinic as part of the nursing team. So what happens in my case is I have my test date and on that date I get out my device, load it with a test strip prick my finger and drop some blood onto the test strip and wait. The device will take a few seconds and then will show a value on the display. My values are seldom spot on at 2.5, but are always in the range 2.3 to 2.7 and I would say fall in this range 95% of the time.

I then phone my GP surgery and speak to the reception lady and give her my reading, she passes it on to the nurse who phones me back later in the day and gives me a new dose to take and a new test date.

Its really that simple.

Every 10 tests I go to surgery meet my INR nurse, 'ave a chat and a giggle and I take with me my device. I do the finger prick thingy and drop blood onto my test strip in my machine and the one in her machine ....... from the same puncture wound ..... and see what the values are .... in all cases the value on my machine and on her machine are the same .......... at worse they are no further than 0.1 apart. This satisfies the INR nurse that my machine is still producing accurate results.

In a sense, this whole process is virtually the same as diabetics use to do their finger prick tests to establish their blood glucose values, just the kit is slightly different ...BUT the process is the same. This doesn't stop diabetics leading a full and normal life does it.

So don't ever forget that ............. the naysayers of Warfarin seem to.

Every now and then you will get a reading that strays outside the range ......... a month or so ago my INR on test suddenly shot up to 3.6 from an earlier value of 2.7. So, I was outside the theraputic range . I phoned my clinic and they gave me a new test date and a new dose. It took about a month to get sorted but I'm now back on track. It was a bit of a mystery as to why this happens but almost certainly it was due to my messing about with my greens. I hate greens and my wife has to force feed them to me :-)

Next, activities - Warfarin (Coumadin in the USA by the way) will not change anything, just be careful around the house. You will bruise more easily, and the bruising will take longer to heal than a normal person - also if you cut yourself blood will flow quite freely and will take a bit longer than normal to heal. BUT, in both cases you will heal. I still work and drive a bus for a crust ( yes even throughout lockdown) so I always carry a mini first aid kit in my bag in case of mishaps on shift, a range of sizes of plasters and some antiseptic wound cleaner spray. Job done. There is someone on here who is into motorsport and has been known to damage himself when tinkering with engines and stuff - he's OK too.

Twice I have had to stop Warfarin , once for a brain scan and the other for something more challenging - knee replacement surgery. In both cases I had to stop Warfarin 6 days before the event. As soon as the scan was over I restarted Warfarin. No problem. with the knee replacement job as soon as lengthy surgery was over and I was returned to my room the nursing team injected my tummy with two doses of Fragmin - a bridging anticoagulant - and that boosted my intake of anticoagulant instantly and that night I resumed my Warfarin. No problem. From memory now it took about a week for my INR values to return to normal after both procedures.

Travelling, Heathrow to Sydney or Melbourne is a more challenging trip than UK to Washington. What I always do is keep copies of my prescriptions with me and obtain a letter from my GP stating the need for my array of drugs in my hand and hold baggage, just in case of queries from customs or immigration in other country's or back in Britain on your return. I always take my device and kit with me and do tests when I am away, even if I am not scheduled to have a test. I always try and get a contact email address or I make a Skype phone call to my surgery if I have a test result to provide them.

Always spilt your drugs, put some in the hold baggage and keep some in your hand baggage just in case of delays or flight diversions. Not really an issue transatlantic but long haul can be fraught with problems.

My diet ( food and drink) hasn't changed over the years - apart from needing to be force fed greens - and I still bash the beer, G & T, and wine as I feel inclined. The key thing is that whatever you eat and drink do it CONSISTENTLY !

Well, I think that describes much of the life of a Warfarin junkie, don't worry, you'll be fine. A new challenge in life and think of all those trips to Washington - this lockdown stuff isn't gonna last forever.

Oh yes, test strips for this device are available on prescription. Not sure about the lancets but they are relatively cheap to buy anyway.

Finally, if you get onto Youtube and do a search for Coaguchek XS INR testing you'll find some short videos on the process. Or visit the Roche website and see what they have on Coaguchek XS testing devices.

If you have a query on anything get back in touch or PM me - I'm not an expert but I have lived the life with Warfarin and my life is totally normal.

May the force be with you and enjoy your travels.

John

Lindaj754 profile image
Lindaj754 in reply to

Thank you so much for this encouragement which was much needed at the end of a bad week! My gp although good is a bit blunt and even worse over phone or email! Little info given.

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