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Warfarin blues

Lizty profile image
27 Replies

So...here's my latest warfarin pantomime update. Ablation due in six weeks in busiest working week of year. So........I move all work forward so can be completed before ablation. Doubles workload of course! So bit tired as result and miss one inr check.

What do you think.?

Yesterday I get a cancellation...can go Monday. Agh! Say I need levels checked as last time I read too high and all cancelled 15 minutes before surgery. Okay...so get them checked today and the levels are now below 2. How did that happen? I have been sooooo careful. No salads or anythingl Now waiting for advice call from hospital.....but they are soooo busy! How on earth can you live a normal life with all this going on? Phew...thanks for letting me vent..!!!

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Lizty profile image
Lizty
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27 Replies
wendicarro profile image
wendicarro

Hi,

Its a real pain when that happens, I was the same a few years back, my INR levels were

wendicarro profile image
wendicarro in reply towendicarro

Sorry my INR levels were stable for weeks then day of ablation level was 1.8 I was gutted but they went ahead as it had been stable right up to that point, which I am so grateful they did, this gets right on your nerves at times, hopefully you get sorted soon.

Wendi

Lizty profile image
Lizty in reply towendicarro

Thanks Wendi..... relief to think I am not the only one. I am marginally upping my warfarin tonight hoping that it will register on Monday. But really glad I insisted on having it checked today. One thing is for sure, if they don't do it I am never going for a cancellation again! Too much to fit in to a short period and far too stressful....

Rellim296 profile image
Rellim296

Nightmare, but (unfortunately) familiar ground! Why not ask if you can swap to a NOAC as there could be quite a delay now while you get sorted if they insist on four stable weeks of INR in range?

Lizty profile image
Lizty in reply toRellim296

I know... it is a thought. Actually I haven't had 4 stable weeks..... or at least I did have a run of reasonably stable reads until I missed the last blood test.... only one I have ever missed! So last test was now two weeks ago.....

Also, it takes the lab about a week now to post back the results so if I want them on the day to ring in to the nurse, I have to hang around the clinic for a an hour or more. Such a performance! Evidently, with NOACs you just come off them 4 day before the ablation. Is that right?

Rellim296 profile image
Rellim296 in reply toLizty

Well I was told not to take mine only on the day of the ablation. I used to have it with breakfast. I took it after the ablation with the evening meal so just missed out about 12 hours and have stuck with evenings since.

I had trouble with a stable INR for the previous ablation - would have two weeks in range and then drop below. I had weekly tests for 3 months and in the end steered clear of anything green. My other half was on a very limited diet at the time for radiotherapy and luckily what he was allowed to eat was low in vitamin K. I had to go each week to have a venous draw and then ring the nurse in the evening and she would tell me what my dose would be and the week's instructions would also be available for me to collect at the surgery. I got there in the end, but INR on the day had shot up to 3.5. It wasn't a problem.

Dodie117 profile image
Dodie117 in reply toLizty

Might be worth investing in you own machine.

Happened to me too frustrating but was done fairly soon after cancelled one

Lizty profile image
Lizty

I think I might have cracked it. I had such a busy time out and about this week.... after a long sedentary period of paperwork...... that I was travelling into town, walking, climbing stairs etc etc much more than usual. That, with all the added buzzing around I had to do to prepare for the later ablation (!!) has meant I have hardly sat down for any length of time!

So now I read that exercise can lower the inr levels? Anyway, I am not getting any more stressed about it.

If it happens, it happens. I will let you know!

Rellim296 profile image
Rellim296 in reply toLizty

I don't know that it's proven but I got the feeling that the more steps I was getting in every day, the lower my INR. I think too that people who take a high dose of Warfarin also have quite a lot of exercise in their lives.

Elbows profile image
Elbows

Get yourself on Apixaban, no interactions with food and lifestyle and you are nearly immediately in range.

PeterWh profile image
PeterWh

See my comments on the post submitted by Elbows an hour ago called Should I or shouldn't I be Anticoagulated.

This is the link healthunlocked.com/afassoci...

Lizty profile image
Lizty in reply toPeterWh

Read it now, Peter. Very interesting. I am at St Thomas' and they told me Friday on the phone that they had my records and I was ' ready.' When you said that you were 'bridged' with heparin, did you mean that they balanced the under-reading of your warfarin with heparin?

Are you still on warfarin and did you ever get it regulated?

PeterWh profile image
PeterWh in reply toLizty

I really should have said given heparin injection because INR was below target (they had me take warfarin the night before and the same evening of the ablation which was only a few hours after the ablation finished.

Elbows responded to my response that you just read and a short time ago I gave him further information which addressed your question about regulation!!!

I saw my heart valve registrar on Friday and subject to the consultant's final agreement they are proposing to do an angiogram in a few weeks. For that they need me to stop warfarin 3 days beforehand but inject myself with heparin so that my Anticoagulation is bridged or covered as. The INR drops.

PeterWh profile image
PeterWh in reply toPeterWh

this is the link healthunlocked.com/afassoci...

Mike11 profile image
Mike11

Mine fell to 1.7 on the day of the op and the EP simply 'pumped me up' with anti-coagulant as he called it. Not sure what he used but no delay to the op

Lizty profile image
Lizty

Thanks so much Peter.....!

millie-becca-187 profile image
millie-becca-187

I was exactly the same with INR levels whilst taking warfarin. I had to have my cardio version cancelled 3 times because my level was too high one time then too low. The disruption and upset it causes with work, family and your whole life I don't think is fully understand by anyone who hasn't experienced it.

The third time it was cancelled I totally threw a paddy! I told the consultant in no uncertain terms that this just wasn't acceptable. He took me off warfarin and put me on 'Rivaroxoban' the best move he's made so far. No more weekly trips to the blood department wondering what my INR level is. This is because your INR levels are not checked. The medication 'just works '. No more watching what I eat. No more blood tests. Yippee.

So eventually got cardioversion and it hasn't worked. Now waiting to have ablation at LGI.

PeterWh profile image
PeterWh in reply tomillie-becca-187

If you are on a NOAC then your INR is the same as a typical person (0.9 to 1.2). As you saw my INR on the day was low but EP still went ahead.

Lizty profile image
Lizty in reply tomillie-becca-187

Oh Millie.... you are so right! I am really tense today, despite being aware now that there is still a slight chance that it won't happen. I even snapped at a friend who phoned to wish me well! Everyone says... 'relax...take it easy...' but they don't understand how much both the condition and the medication change your life...'Oh well. Thanks for your message. Good luck with getting an appointment soon for an ablation...

eleanor--1941 profile image
eleanor--1941

Hello Lizty,

Why don't you ask Cardiologist to use one of the modern Anticoagulants,No Blood Tests!!! What a difference it makes.

I am taking Rivaroxaban 20mg taken every morning after eating breakfast,have been on this for almost 2yrs without any problems.Keep well.

Eleanor.

Lizty profile image
Lizty in reply toeleanor--1941

I think that is on the cards, Eleanor!

millie-becca-187 profile image
millie-becca-187 in reply toeleanor--1941

Me too 20mg 'Rivaroxoban' best thing ever not having to take warfarin. When I first started taking it pharmacy had never heard of it and had to order it in. On a recent admission to cardiology ward at PGH they didn't have any and nurses not aware what it was, so it can't be prescribed very often

MarkS profile image
MarkS

Many EPs like patients on warfarin for an ablation as they do not need to interrupt anticoagulation. I think it is vital to remain anticoagulated the whole time. Interrupting anti-coag for an ablation is not a good idea due to the very high risk of microemboli. It is possible to use the NOACs for an ablation without interruption and that's given good results in the latest trials, but some EPs are not up to date with these.

millie-becca-187 profile image
millie-becca-187 in reply toMarkS

EPS need and should be up to date. It's not acceptable otherwise, knowing how patients are affected by the whole thing.

Francis23 profile image
Francis23

What are you having operation for?

Lizty profile image
Lizty

Complex ablation for atrial fib and atrial flutter. Getting them both done together..(maybe!!) :)

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