There is, and always will be debates about the terminology sometimes used on this forum. I think it is sometimes easy for folk to forget that the primary purpose of the forum is to help AF patients to understand their condition better and how best to cope with their symptoms. Cast your memories back to when you were first diagnosed and how scared you were when first told you had AF. Remember how you reacted when you were first told about a lifetime of beta blockers, anticoagulants or even the dreaded term blood thinners 😳 etc etc. Over time, and as confidence increases it’s easy to become less concerned about using the right terminology especially if the terms used are commonly used by those who ought to know better but use the term out of habit.
Those of us who contribute regularly to this forum, especially volunteers, try to always remember the newbies who may not necessarily post, but follow the posts earnestly to improve their knowledge and understanding of the condition. This is why we try to use the correct terminology because it may help to reduce the fear factor if they understand warfarin and DOAC’s do not thin blood so you are not going to bleed to death if you cut yourself. Ever mindful that this might discourage them from taking their medication.
Similarly, an Ablation is a procedure, not an operation. If you know a bit about having an ablation then the difference is probably not important but try seeing it through the eyes of a Newbie. A heart operation sounds like a terrible ordeal, especially when the sternum has to be cut etc etc. Fortunately, this bears absolutely no relation to having an Ablation procedure which is much simpler and by far less risky than any operation.
By all means comment, but there can be no logical argument for using the wrong terminology if it has the potential of increasing patients concern and also requires more letters to type!
I live with someone who is a 'stickler' for language and I do lean that way myself.....however.... I believe we should try and accomodate all language and terminology on this site and so long as it can be understood and people are polite/civil that is alright by me. A quick thanks for help/advice offered also helps .
Totally agree, I’m only expressing my view as to the reasons why I try to use the correct terminology in my replies. What others do is, of course, entirely up to them....thanks for your reply.
Are commonly used abbreviations such as AF, PAF, Echo, ECG, Ectopics to be corrected as well ? the forum could be a scary place for new members if they are worried about not using the "correct terminology".
Newbies often don't know about pinned posts, plus pinned posts don't show on my device, personally if I don't understand or recognise something I look it up so not a problem. Typing Atrial Fibrillation rather than AF everytime is going to become a right bore !
As for correct terminology I've wondered why DOACs are called that instead of FXOACs which is accurate. A "Direct Oral AntiCoagulant" is as misleading as "Blood Thinner". The "direct" not qualifying "oral", but on the way it works on FactorX.
Personally I hate the term newbies it comes across as a little patronising and shouldn’t we just share information and support? We all come to the site for this and I sometimes feel put off from commenting or even reading the full text due to the tone and language used. We are not all experts and into technology and for some people it’s a very stressful and anxious time when they post. Let’s be kind and thoughtful towards each other and yes sometimes we get it wrong but how people respond is what’matters
I understand the points you raise Lucy and my post was certainly not meant to be controversial. It’s sad to hear that you sometimes feel put off due to the manner in which some comments are made. I guess we all have different ways of expressing ourselves and sometimes things said in type come across differently than they would in a face to face conversation. I suppose we need to blame NCIS for the term Newbies but whether we like the term or not, arguably they tend to be the most vulnerable group on the forum. Almost everyone on this forum is not medically trained but of course, they acquire varying degrees of knowledge over the years. I can only speak for myself, but I have been fortunate in that I have belonged to an AF support group for six years and over that time I have attended several presentations made by medical experts in their field. I try to use the knowledge I have acquired to help others because I can still remember how scared and vulnerable I felt when I was diagnosed in 2014. That said, I always make it clear that I am not medically trained and that we are all different so one size definitely does not fit all.
Hopefully you will continue to get help here and will not be put off from contributing in the future.....best wishes
As a relative Newbie, I am pleased with all the advice on here, and after reading posts, all the terminology (for me) is easily picked up upon after a while.All regular posters are very informative...especially FlapJack & BobD among many others. Thanks to all !!!
Totally agree FlapJack - misleading expressions such as blood thinners are, I think, a throwback to the days when patients were not expected to know anything, much less contribute to the management and treatment of any condition.
I have an elderly neighbour who is terrified of having a stroke because 'his blood is so thick'. To me, that is a cruel outcome of telling him that Warfarin thinned his blood, although it may urge him to take his AC for protection.
I was once very tempted on filling a form which asked 'Do you take a blood thinner?' to answer 'No, I take an anticoagulant' - I didn't though.
Another fear inducer is the term ‘heart failure’, which although correct, implies that your is broken or worse. I wish there was a less scary term as I have lost count of the times I have comforted people who think they are going to die any moment after such a diagnosis. My father had ‘heart failure’ for many years but died as a result of an infection combined with COPD.
Could not agree more.....once they come up with a more sensible a realistic alternative we will champion that too!!
I agree, and when I respond to someone who appears to be a Newbie, I avoid using abbreviations unless they have used them in their question. Abbreviations and Acronyms were added to the pinned post to help newbies because they are so commonly used.....thanks for your reply.
Again I agree because I know uncontrolled AF can lead to Heart Failure which in turn can lead to other complications all best avoided.
The thing is when someone places a post on this site, an answer should be given with kindness and empathy. It's never a time to show off how much you know and what clever words you can use. Never ever should their post be criticised or corrected.
Bob has apologised to Paul and explained why his reply may have sounded a little curt and Paul has accepted that apology - end of story!
Nobody should, would or could disagree with what you say. The reason for my post was not meant to be a comment on what had been said by others but to express why, in my opinion, it is important to use accurate terminology when referring to anticoagulants and to perhaps a lesser degree, procedure when referring to an ablation. You have been making valuable contributions to this forum a lot longer than me and without doubt, you are one of the most empathetic contributors here. Hopefully you understand the reasoning for my post. It was not an attempt to tell folk what they should or should not say but it was an attempt to encourage them to use more accurate terminology which might help to allay the fears we know many have about taking anticoagulants.
New people to this forum may not always understand the correct terminology. What they need is a friendly, welcoming response and perhaps to know that we have experienced the same thing as them. I think sometimes using the correct terminology can sound a little pompous and bewildering.
It's helpful for all of us to understand the meaning of each term as it makes communication clearer. However, it's very human to describe your experiences of things differently. I speak from personal experience as a voice researcher who spends a lot of time working with singing teachers on the 'coalface' of my profession.) So when we're trying to help each other it's good to keep both in mind. The definition of terms that we have here is a good start.
Many things have 2 names, I am a gardener and most plants have at least 2 names , some a lot more.Some people say corona virus others COVID 19.On my patient alert card for Xarelto also known as Riveroxaban, the first thing it say is ‘Xarelto THINS the blood, which prevents you from getting dangerous blood clots.
I will continue to say I am on a blood thinner as this is what 99% of people use and understand.
Please take a look at my reply to Ppiman below. Newly diagnosed patients are scared and vulnerable and anything we can do to allay their fears has to be for the better. I have been on this forum for several years now and have heard many say they will not take their “blood thinning” medication for fear of having an accident and bleeding to death. The result is they are significantly more likely to have a seriously life changing stroke or die. To a degree, this is avoidable if we use more accurate terminology.
This is absolutely the only reason for making the point, it certainly is not an attempt to dictate what people should or should not do, that is not what we are here for......
I recently had a bleed from my kidneys and saw lots of various medical people in connection with this, all of them talked about blood thinners, not anti coagulants, so it’s not helpful to say on this forum that you should not say blood thinners!
In my opinion and in the opinion of many others it clearly would help vulnerable and scared people we could encouraged others to use the term anticoagulant instead of blood thinners. If, like me you were to politely ask medics if it would be better if they used the term anticoagulants rather than blood thinners you would be surprised at their positive response. I wish people would understand that I am not saying what people should or should not say, but I am saying the term anticoagulant more accurately reflects the effect of the medication and can have a less harmful effect on recently diagnosed AF patients. If that’s not helpful for some then so be it.
I am a recently diagnosed PAF patient and am not scared of the term blood thinners, these drugs can have side effects as I have found out and I certainly would not tell every nurse, doctor and radiologist that treated me not to say blood thinners!!I was just grateful for the care that they all gave me.
Whilst the term blood thinners may not scare you, why not adopt a more empathetic approach and consider the fear it can create in others perhaps less strong minded as you. We know there have been occasions when patients are so scared of a spontaneous bleed they have not taken their medication and consequently exposed themselves to serious risk. No one is suggesting you should challenge medics, what I said was that if you did, you might be surprised by how sympathetic and understanding they might be. We are not stupid, we know the term blood thinners will continue to be used widely. However, as a group of 25,682 members with a common interest we could make a difference for all the new people joining on a regular basis. Hardly a big ask.........
Wow you cannot let it go! In the real word of billions of people the term blood thinners is used, perhaps it is wrong to cosset people on here because they are going to be shocked when they encounter the term in hospitals or when giving blood etc.Also they will be horrified when they read their medication leaflets because the MANUFACTURER describes these pills as thinning the blood!! Perhaps you should write to them and say it is upsetting people lol.
Also try looking at the NHS website about Apixaban, the No1 point about this says it is a type of medication known as an anticoagulant or blood thinner, are you going to suggest people don’t read the NHS websites in case it upsets them?
I'm an English teacher and spend my life getting students to use language precisely, as well as to support the assertions they make. I understand the points being made but my cardiologist called my ablation a "small op"; and the term "blood thinners", although not used by him, is used by many doctors and even by some leading medical websites.
Whilst accepting the thrust of the arguments to use medical terms accurately, the terms blood thinner, anticoagulant, operation and procedure are, to me, all perfectly understandable and acceptable.
I don’t have a problem with anything you say but in my view this is not meant to be an English language lesson, it’s purely an attempt to explain why I and others encourage the use of more accurate terminology. Blood thinners are perfectly normal words but the medication does not thin the blood and it’s that concept which tends to frighten people when they are most vulnerable. Similarly, an Ablation is a procedure similar to an endoscopy or colonoscopy. It’s not a particularly pleasant experience but it’s not as daunting as a heart operation.
I think part of the problem is that blood thinner is a general term that is used to cover anti aggregants as well as anticoagulants . Aspirin, clopidogrel etc are also described as blood thinners.
I do understand the points being made but I feel that a sense of proportion has been lost.
This is from the NHS website:
“Rivaroxaban is a type of medicine known as an anticoagulant, or blood thinner.”
In terms of ablation being a surgical “procedure”, yes, it is. But it often requires a full anaesthetic and bodily incisions into a major artery, so I can’t, myself, see that it is sufficiently misleading to call it a “small op”, which my own doctor did.
This is from a NHS UK Health Trust website:
“These types of VTs are potentially curable with a small operation called catheter ablation”
Dogmatism has its place in the world, for sure, but where it’s at all possible, I’d argue that pragmatism is preferred since it helps the world to go round much more smoothly.
“Similarly, an Ablation is a procedure similar to an endoscopy or colonoscopy.”
Not similar at all. Endoscopy and colonoscopy are via body orifices and leave no scarring, (unless biopsies are taken). The purpose of Ablation, in this context, is to cause scarring inside the heart.
I don’t consider ablation inside the heart as low risk. But respect your right to have your opinion.
If you insist on “correct” terminology then every time you say ablation you should specify what is being ablated, as it is used on other body parts as well as in the heart.
I also think anticoagulants should be called just that but accept that other people call them “blood thinners” including forum members, doctors, manufacturers, experts on AFA patient day presentations, etc
I think you make very valuable contributions to the forum and actually agree with you most of the time.
Have a good day, keep up the good work and don’t assume others are less able to understand “blood thinners”.
I’m not qualified to say whether or not an ablation is low risk, all I am saying is what I have heard a significant number of cardiologist/EP’s say when they make comparisons with other forms of heart surgery.
I have, and never will insist on anything in this forum or anywhere else for that matter. As a member I wouldn’t be allowed to even if I wanted to so I have absolutely no idea why you, or anyone else keep suggesting I am trying to dictate what terminology people should or worse still, must use.
Your points about relevance, excuse the pun, seem irrelevant for the purposes of my post. All I was suggesting that it is generally accepted by the medical profession that an ablation procedure is far less risky than most other forms of heart surgery. This is the only reason why I, and others here are trying to encourage folk to use the term procedure rather than operation when referring to an ablation as it is more likely to reduce the fear factor when we respond to new members.
Blood thinners is a term which will be used for ever and a day. I know that, you know that and so does everyone else. However, on this forum there is an opportunity to make a difference that will have a huge impact on newly diagnosed patients who, like we did, come to this forum for levels of help and support they are unlikely to get anywhere else. Over the last six years I have seen it many times and it scares me when people say they will not take their blood thinners because they are frightened of bleeding to death. Generally, this is because they genuinely believe their blood is now much thinner and consequently they will bleed spontaneously for little or no reason. We know that won’t happen, they don’t but if we explain how anticoagulants work and as a group, use the term then there is a good chance they will understand and accept that anticoagulants are not so frightening as they thought. We can either agree to give it a try or we can poo poo it and not bother typing the word....
Thank you for your kind words, they are appreciated and after reading this I hope you will agree with me over this too. I know some are more vocal than others over this subject and some get frustrated for a variety of different reasons, but my motivation is simple. Typing anticoagulants or procedure instead of blood thinners and operation requires no effort, but particularly using the former has the capacity of saving someone life. This is the only reason for my post which seems generally to have been well received.
Apologies for banging on a bit, and none of this is personal. I do know that most people here understand blood thinners, it’s the odd 5% or so that don’t which is the worry......enjoy the rest of your day too and let’s hope the vaccine works too......best wishes
Hear, hear FlapJack. I am a relative newbie (July 2020) and can certainly agree that the ”journey “ of Afib starts with fear and bewilderment and slowly changes to acceptance and familiarity of symptoms, terminology and treatment options. Often the only common link with us all is our condition and we are all have different ways if coping. I have huge respect for the “oldies” and volunteers on this forum who share their knowledge and experience and also for those who are in need of letting off steam and seeking some sympathy.
Some of us like to have more technical information and some just reassurance for the 3am witching hour, some are in a free fall of panic and some need specific pointers what to do next. There is no one size fits all but the links to education content and videos invaluable as are the helplines and glossaries of terminology and abbreviations.
I love to see members of the forum being pointed towards solutions and options or being talked down from panic and despair.
I've always used the term anticoagulant but didn't understand how it all worked. I am now curious.
If I cut my finger then the platelets stop the bleeding by forming a clot on the skin. The blood underneath the skin keeps flushing the underside of this clot but it doesn't affect the outside which dries and forms a scab.
If I have an accident which damages blood vessels inside my body then the anticoagulated blood minus the X factor flushes round both side of the damage and the platelets have to act on their own.
This is why we need to carry cards saying we are taking an anticoagulant and perhaps we should be more interested in our platelet levels.
I’m not sure if we are having our virtual support group meeting in December but if we do, I will raise the question with the EP. Particularly interesting for me because I have a low platelet count!
I hope that you haven't alienated a lot of members who will be too scared to comment or offer advice in case they use the wrong terminology. All I can offer is my experience and support on what is now a three year journey. I often think twice before responding to people who have just started their journey because it isn't always plain sailing and I don't want to upset anyone by being truthful. Most of my health workers refer to Rivaroxiban as blood thinners and to an ablation as a procedure.
Btw a colonoscopy was a huge deal to me and I suffered a great deal more from the effects of that than from my valve replacement procedures.
You make very good points. My few colonoscopies have varied greatly but one was most unpleasant thanks to an over-strong laxative which caused such dreadful stomach cramps. These were brought on again by the air they pumped in during the procedure. Oh my! The nurse held my hand during it all and I can tell you that was a comfort.
My blood pressure dropped so low that the procedure had to be stopped whilst I recovered and then I was offered a different form which wasn't so invasive. I was awake throughout and scared to death. I would never tell a "newbie" (horrid expression) because that doesn't happen to everyone.
No - for sure that's true. I've had a few and the last one was near painless - except, of course, for the ever-present fear of what it might show. One thing I refuse each time is to look at the screen which, for some reason, the doctor seems to want the patient to do! No way, Jose!
This year, thanks to my worsening diverticular disease, I was lucky not to have to have another colonoscopy but to be offered instead a "virtual colonoscopy" which used a CT scan, followed by an MRI. That was painless of course and showed up that I'll live another day!
Watching the screen is the best bit, I had my umpteenth oscopy last week and had 10 biopsies taken, it was a joint effort spotting the problem bits 😆 Although this one was quite painful despite the pain meds I was sorry when it ended !
Well, I suppose when you know what to expect but I fear seeing something nasty. I watched the first one many years ago and when the doctor took a biopsy he messed up and caused me to bleed quite a lot. Such fun
It’s not for me to tell people what to say, it was attempt to explain why some of us are encouraging people use terminology which might be more helpful to others. Regarding the reference to endoscopy and colonoscopy I was referring to the risk factor not the experience of having one. It would be interesting to know if you felt the valve replacement procedure was potentially more of a risk than the colonoscopy (which makes my eyes water just thinking about it).
With hindsight I would rather have a valve replacement as I was not awake. I suffered from low blood pressure during the colonoscopy and honestly thought I was going to die.
So do I!!
It’s not for me to tell people what to say, it was attempt to explain why some of us are encouraging people use terminology which might be more helpful to others
"What they need is a friendly, welcoming response and perhaps to know that we have experienced the same thing as them"
100% agree.
When answering posts I tend to use abbreviations and assume the poster will know what I mean. If it's a new forum member who is also new to afib (atrial fibrillation) I'll try and do what I've just done in this sentence ! Use the abbreviation with the correct term in brackets so they will know what it means when they read other posts. Some members may be elderly and not 'computer savvy' so it's worth taking the extra few seconds to type out - just to make sure they fully understand the meaning.
Yes, aren't there three types of afib? All of which abbreviate to P.A.F.? Are have I got that wrong. When someone says they have PAF im never sure which they mean.
PAF = Paroxysmal AF. The type that comes and goes without warning, often referred to as “episodes”. The difficulty is that it can be confused with Persistent or Permanent AF and I don’t know the answer to that one!
If we are on the correct anticoagulant dose, "bleeding to death" should not be likely - but excessive bleeding is a possibility - so dentist have to avoid some techniques.My brother bled for an hour or more after having a covid swab sample taken - but he was in hospital and they were able to stop it.
A little blood looks like a lot, but, if (you are on an anticoagulant and) you bleed profusely for too long - dial 999!
I was more concerned about all the abbreviations when l first came on this site. I was constantly looking them up and some letters were full of them. Sometimes when l googled an abbreviation l couldn't get the right explanation as the letters were an abbreviation for something else. Why do people write in this way? Have they forgotten the art of letter writing and everything has to be rushed or are they showing off?
Very well said. This is a problem and glad you have brought it up. My use of incorrect terminology 2 years ago and the lashing a very regular contributor gave me was detrimental. I stopped reading for a year and up until this reply to your list have only been a silent observer. Amen FlapJack. Thank you
However, am I correct in thinking that there are bleeding risks associated with anticoagulants ? I have a small card I have to carry and I seem to recall that if I hit my head or anything while on them I was advised to go to hospital to make sure there was no serious bleed as they DO make you bleed more if you have an injury?
You are absolutely right Jaja, patients are encouraged to take the HASBLED test which is similar to the CHADsVASC test which helps to assess the patients risk of having a bleed before being prescribed an anticoagulant. I’m not medically trained, but as I understand it unless there is a history of spontaneous bleeding in the family, the risk of having a stroke is significantly higher than that of having a spontaneous bleed. Internal bleeding as a result of an accident is very different and any trauma to the head needs to be checked out immediately.
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Talk on ablation by Dr Saba for Surrey ASG
Silly question...?
Ablation
