I'm in hospital with a high INR. They took me off warfarin altogether to bring it down. If it's back in my range today, they want to send me home for me to go straight back on my usual warfarin dose tomorrow with no way of checking my INR. I don't think they can expect that if my INR's back in range at 0 mg warfarin today, to automatically stay in range if I go straight back onto my full normal dose of 8 mg warfarin tomorrow.
I don't think one good INR reading, while I'm still on zero warfarin, means they should expect me to do that. If they don't see the need for titration and want me to jump back onto 8 mg, they should try it at least once while I'm here to see what happens, shouldn't they?
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(I mean they would send me home today after my first good INR reading, for me to start the full dose warfarin again by myself tomorrow. They know I live alone in a small town and don't have a self-testing machine. GP will be closed, hospital's a 20 min taxi ride away.)
GP wouldn't test me at short notice anyway. They'd tell me if I wanted a test on Monday I would need to go to A & E. A & E wouldn't do it either just for my peace of mind, and shouldn't have to anyway.
Don't worry, usually warfarin is actually taking 48 hours to reflect on the blood result So if you test next week on Tuesday it will be fine.
Anyway, to have more of an idea. I would recommend for you to test on Friday
I had many times problems with INR being extremely high or low.
They have never kept me in hospital for that, they just gave me a different dose, including not taking anything for a few days.
However, since my inr is very problematic from the beginning, I bought the coagcheck machine, that in many ways, it gives me a bit more sense of security
I dont recall it being very expensive at the time I bought it, but definitely worth it all the pennies.
Maybe, it is something to consider for your piece of mind
It may have been around for a while but it has different properties and works differently than others. Besides which, it can be immediately reversed which can be an important option for many if there is sudden bleeding or conditions which require surgery. DOACs can’t be reversed - you have to wait until they’re out of your system which can put people at risk of stroke or heart attack.
When I had my open heart surgery last year, I was advised that Warfarin - (a Vitamin K antagonist) is the only anticoagulant licensed for use in patients with mechanical heart valves. This drug will be required for life, to reduce the risk of clotting around the valve.
I've been on it for 20years and is the only one I can take for the same reason...mechanical valve. But life is so much easier now than then when you had to have a proper blood test always difficult for me leaving me very bruised.....now a 2 minute finger prick !
Yes, I wish they had an INR machine in hospital! Vein tests all the way here unfortunately. Plus I keep getting given my reading without a corresponding warfarin dose for that day, and then asked, 'Well, how much do you normally take when it's that level?' I could scream 😂
Hopefully you do go home . My dad was on warfarin but had to come off it because it gave him bleeding in his stomach . My mother in law was on it but hated having to keep having tests and her dose changed weekly and it gave her nose bleeds occasionally when ment at trip to A&E.
When my PAF was diagnosed and the small hole found in the side of my heart I was put on Apixaban and Flecainide. Apixaban is a blood thinner but doesn't need regular testing . I bruise more and can't eat crunchy foods as they give me blood blisters in my mouth but they don't hurt and disappear in a day if I get one. I told them I wouldn't go on warfarin but they said I couldn't have it because of the hole and Apixaban worked better than warfarin. I am 66 been on both tablets since 2021. And they are both working well.
As others have said, Warfarin is old “tech”. Having said that there are medical reasons why only it will do for some.
Suggest you ask medicos why it’s Warfarin for you. If it’s for some admin reason or other reason of someone else’s convenience, ask why you can’t be on rivaroxaban or the like which is a one size fits all and needs no monitoring testing.
It’s not ‘old tech’. You’re the second person to claim this and it’s totally misleading and inaccurate. I don’t get this thinking. It has advantages and is used for specific situations and conditions.
You are correct. My wife is on Edoxaban for paroxysmal AF. Our daughter who has a congenital heart condition and is now fully paced is on Warfarin. As she has been treated at both The Royal Brompton Hospital and now at The Liverpool Heart and Chest Hospital, one has to assume that the cardiologists know what they are doing. I suspect that the choice of anti-coagulant has something to do with the cocktail of heart drugs that she is on.
BTW I was on Warfarin from 2010 and was moved to rivaroxaban in 2018. For me and many others it was new replacing old. And that many old technologies are still valuable in some circumstances Is unsurprising.
She has an artificial heart valve. Warfarin is the ONLY anti-coagulant approved for this! The new family of "blood thinners" can't even be trialled or tested on someone with artificial valves because failure probably means death! Warfarin, since it's inception in the fifties, has saved millions of lives and actually is something of a wonder drug!
Er...you mean mechanical heart valve. I've got an artifical heart valve - a tissue one - for the precise reason that I didn't want to be on warfarin - DOACs work fine for me
If we're splitting hairs I'll concede. It's still a bovine or porcine valve. Not created by man. What the lady has, requires warfarin and can't be treated with any other anti-coagulant.
I did not write that to support you, Silversurfer, so please don't use my words against Mitchum, who's correct and actually being helpful. If you hadn't noticed, I'm the original poster. If you would like to debate semantics, I'm sure there's a Facebook group for that. Man certainly does not create bovine and porcine valves. Whether their creator is Nature, God or the animal's parents is a question of metaphysics and I'm sure you could find a Facebook group for that debate, too. Or you might wish to take a biology class on reproduction if you think a man could create an animal. Or try it and see...
Hi I have AF and pulmonary hypertension, I was on warfarin for years it gave me brain fog and my hair was falling out I didn’t realise it was warfarin. Once I got a call saying my levels were too high, I had no bruising. They called me in to do another check and my levels was 3.1 not 10 like they said. I have only one arm they can take bloods from due to damage of the other one. I was so happy when they took me off it and put me on edoxaban. Within a week the brain fog had lifted and I noticed now my hair isn’t coming out in chunks.
I have shocking brain fog since being on Warfarin. Unfortunately due to now having a mechanical valve - I’m stuck on it forever. It’s so frustrating forgetting what I was saying if interrupted, mid flow. Misplacing things at home, (usually my phone!) and just not remembering things like I used to pre surgery. I was such an on it, organised person. My family laugh it off - but it does worry me.
I remember being the same on it. I convinced myself I had dementia until I came off it. I’m sorry to say you’re one of the few people who have to stay on it.
I think it's fair to say DodgyTickerMum already knows that. She does say, 'Unfortunately due to now having a mechanical valve - I’m stuck on it forever,' in the comment you're replying to.
Do you know that there are two other vitamin k antagonist blood thinners available?
I didn’t, I only found out on here, and had to push my cardiologist to take me off warfarin because of my sickness and hair loss. I now take sinthrome, or acenocoumarol (the generic name). I have two mechanical valves like you, so I am lifelong too. If you’re concerned, please talk to your cardiologist. xxx
That’s really useful to know. I will definitely look into this and discuss with my cardiologist. I recall my anaesthetist saying prior to my surgery, that the reason Warfarin is the preferred drug of choice with mechanical valves, is that its effects are swiftly reversible, if the I.N.R is out of range. I assume the same would apply to the other 2 alternatives too?
It’s interesting both you and Deejay62 mention hair loss. I’ve noticed having thinner hair too. I hadn’t made the connection with Warfarin until now! Honestly, no one said it would be like this! 🤦🏼♀️
I know, I get really severe episodes of sickness where I projectile vomit or feel so sick I cannot move my head! It takes about a month to get through each cycle. Nobody knows what it is, certainly not the GP. I didn’t sign up for this, but I am so glad I’m here to see my boys grow up! Jules
Oh my goodness! You poor thing, that sounds hideous. Did you suffer like this pre surgery? Have you spoken to your Cardiologist about it? Maybe your meds need tweaking or replacing? You can’t go on like that, bless you. This appears to be the problem with heart conditions. One issue gets fixed and several others seem then to be created. That was certainly my experience a way. I really hope you get something sorted soon. Please don’t suffer in silence. ❤️🩹
I'm on marcoumar and check my inr once per week. In the early days every other day. I would advise passing any medical questions to your doctors and request a target inr value also asking how often you should get tested. Inr testing is quick and easy after all. Understand also why you need to take blood thinners.
whatever you and the doctors decide, it sounds you need to spend some time with the nurse specialist at the testing clinic and find out more about why you need the medication , what you can do to help stabilise your INR (for example I was given really helpful dietary advice) and ask questions - this should help you manage you own situation and know when to ask for help
Hello lovely people and thank you for all your replies. Apologies, all your messages have come through at once and I'm still in hospital trying to sort this out. Sorry I didn't add enough info at first and thanks to everyone who may have checked my other posts or profile for clarity.
I have a metal heart valve and therefore warfarin is the only anticoagulant licensed for this.
I wasn't admitted because of a high INR, this is usually stable and it only shot up because I wasn't told to adjust my dose while I was fasting and taking bowel prep for a colonoscopy that did not go ahead in the end because they have no idea here how to do this safely for a person on warfarin. I am going to be discharged today and my GP will look into other investigative procedures I could have and/or other hospitals that are equipped to get this done safely.
I had one reading within range yesterday and they tried to bully me into self-discharge (by withholding all my meds including warfarin until a decent nurse stepped in when nightshift began) because they did not want to be liable for giving me a discharge letter stating I had to guess how much warfarin to take alone with no INR testing access and lacked the knowledge to tell me how much to take.
The decent nightshift nurse gave me my usual dose late last night and arranged for an INR test today. My reading is now below range and the dayshift nurse again told me 'well you know how much you take' and did not understand that my dose is supposed to vary if my INR is out of range.
I'm waiting to see a doctor who will hopefully discharge me but I'm not accepting a discharge letter without it stating what dose I should take today because it is a clinical decision and I don't want them stating I decided to do what I want against/without medical advice. I am also insisting on a contingency plan for if my GP cannot see me at short notice, ie to come to hospital anticoagulation clinic.
I will phone my GP in the morning.
I should not be left to manage an unstable INR alone without a self-testing machine which I shall now purchase asap but haven't got yet. If I waited a week for a test, taking my 'normal' dose, it could be down to zero or up to 11, which happened once before because I'd had no access to medical care/INR testing at all, and that was the result I got *after* getting medical care and I'd had a dose of vit k already before that reading as well as no warfarin for a few days, so god only knows what it would have been at its peak, other than it was too high to get a reading. That was what happened last year when I just carried on taking my 'normal' dose and hoping for the best, and I'm not letting them do that to me again.
They gave me permission to go in the garden and said it would be fine if I took my phone and that the doctors wouldn't come till later but if they turned up early they'd call me. I've had a full phone signal on the hospital WiFi and got WiFi calling switched on. I know I had a signal outside. I was using my phone. (And even if the signal had dropped, it would have switched to 4g or 5g. But it didn't drop.)
I get back and they tell me they tried to persuade me to stay, that they told me the doctors were coming any minute and that I insisted on going, and that they tried to call me three times and sent an HCA to Costa looking for me. Costa is nowhere near the garden. I wouldn't have said I was going there, because I never do. None of it is true. But when I tried to politely argue and explain, she kept interrupting and said 'Are you saying I'm LYING???!' (I'm trying to convey her tone of voice there.)
I am so making a complaint when I'm home. About everything. I'm writing here partly to document what's happening, so please don't worry or feel you have to reply, lovely people.
I think they know I won't be bullied into walking out without being discharged, now. So they're winding me up in the hope that I might swear or something, so that they can kick me out. I won't fall for it. But now I'm scared they might make something up, say I've behaved abusively or disruptively when I haven't.
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