I have been a member here since 2017 and have picked up some of the lingo, some relating to my issues some not.
There are so many posts that use shorthand and I have no idea what the problems are so goodness knows how newer members feel.
I started off thinking if I didn't understand the issue then it didn't relate to me but after using Google I found some did but I wouldn't be able to respond if I didn't know the problem.
Now I appreciate some people on here are more knowledgeable than others about cardiac matters and won't see the problem and that's fine, but to make it a more all inclusive site maybe when posting consider will most people understand what your post is about without Googling it.
As I said I ask this politely I hope any responses are made in the same way.
Thanks.
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Heather1957
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Hello Heather
I am the same as you I do not understand the lingo either not at all
As well as some of it may relate to me because I do not understand it I could have some experience and be able to reply but I just move on because I just do not have the time to look on Google
I know there is a post pinned to the side of the page that some lingo explains what it means not all but again I just do not have the time to keep looking at that either and newcomers may not know it is there either
So for me you have made a good polite request by asking
Doing okay thank you although a bit of a stressful time trying to have a 4 day get away in Devon on Monday.
My car broke down but I managed to get to Gordano services and when eventually the RAC arrived it was something that needs a garage repair, the earliest I can get it done is 25th of this month.
We were towed home and I booked a hire car for 9 am the next morning, long story short 5 minutes before I was picking it up they phoned me to say the vehicle was not road worthy and they didn't have another one.
We found another SUV in Cardiff and my brother in law took us down and we eventually made our way to Devon and had 3 lovely days.
My puzzler is when people talk about a LAD - however, when I mentioned my confusion, I was directed to a file that can be looked at to find the meaning, that lies at the top of the page here! Well to this date I have never found the help file and revert to any search engine other than Google - which is just like owning a Barratts house and trying to sell it - you just can't get rid of it!
I don't disagree with any of this and as you say even writing it out long hand may not clarify what the problem is but all I would suggest is just consider the reader and if at all possible simplify the post.
Yes it is—then they put the abbreviation after it in parentheses. Marvelous point! At least if the original post-er gives the term (with abbreviations after it), the rest of us can use the abbreviations in our replies.
Which I really appreciate. Thanks for your consideration take care
Yes I agree the the abbreviations you get on medical reports do take some investigation. I am a bit naughty doing this as I Google alot and I even phoned up the British heart foundation as I want to know how much force I will expect to find when I do my cpet ( cardiopulmonary exercise test ) done one last year. Got another one this year. All I know at the moment., is that 50 watts is equal to stairs up to one floor. 100 watts is equal to two floors via stairs. 150 watts three floors and 200 watts is 4 floors. But you try pushing 200 watts on a up right bike machine. Going to have go tomorrow down the gym. Of cause I will start low and work up to 200 watts but I might get to 100 to 150 watts, that will be me finished for the day. But these test comes back with lots of abbreviations. It's all a bit baffling.
The NHS and any research application for funding require that all patient facing documents are written in accessible language, including a glossary and explanation of all abbreviations.
My thoughts are that the majority of us on here are lay people who through whatever circumstances have either themselves been through a cardiac event or are supporting someone through it.
I am very much a lay person but want to help others so it does help if I know what has happened to them.
As I said though we are all different and I only made a polite request, if someone manages with all the abbreviations or has the time and inclination to look up things then I certainly respect that.
Yes the abbreviations can mean many different things depending on the analysis that is being looked into. One that got me going when I read my report from accident and emergency. Was NAD. Nothing else in the line just NAD. So you mind start to think what is this. Just been through a thorough check up. Found a heart condition and you think what does this stand for must be bad. But NAD stands for nothing abnormal discovered. What a relief. Even blood tests I have to look up the abbreviations. It is quite interesting trying to learn all about the body and the issues you have but it can start to go quite deep. When I went to see my cardiologist. Who seemed pleased with me. We got onto the discussion of my blood pressure. And I said the blood pressure medication seemed to be working. So we got into a teacher pupil situation where she said why do we need to control the blood pressure so I thought I would be clever here. I rambled on about your heart can become large. And it effects the pre load and after load. All she wanted was that it can cause a stroke. And that before I was seen I was a ticking time bomb. Put me I my place.
You are right about abbreviations being confusing: a friend of mine, when in hospital, was asked by a doctor when she had had pelvic inflammatory disease. The doctor had read PID in her notes, but what she had had was a prolapsed intervertebral disc so they can be dangerous, too.
Ha ha. Obvs Milkfairy we know each other and I totally agree with you. Use of technical language outside of an appropriate community of practice tends to obfuscate the discussion. In other words, if people don't make their contributions understandable to others then they might as well be talking gobbledygook.
For example as a chemical engineer who studied the polymerisation of vinyl chloride, PVC and PID have completely different meanings. PVC is a plastic (poly vinyl chloride) and PID is a type of controller: proportional-integral-derivative that has desirable control features but is a bit a challange to tune - and hairy maths associated with it.
Acronyms and abbreviates should always be explained before use.
If I read a general post that is asking for assistance which contains numerous acronyms or medical terms that are not frequently used on this forum ( PVC = Polyvinyl Chloride in my book!) I simply switch off and move on. Ditto responses.
However if I read a post that is relevant to my own situation I am prepared to invest time in understanding any terminology that is unfamiliar to me, and the same goes for a consultant's letter or medical reports about me. And if I am able to respond to a post I will try to keep things as simple as possible without making it too facile. However I do think there is a limit to which contributors can simplify things, as you have to assume that those who participate on this forum whether actively or at arms length have sufficient self interest to be able to take the time to understand what they read where it applies to them, since it is in their own best interests to do so.
However, as you have rightly said above, we are all different, so your views on what it simple may be different to mine and ditto the next forum member. The saying ''You can please some of the people etc etc" comes to mind .
I’m more interested in how something pertains to me and my health. So finding out what an acronym or whatever actually means doesn’t necessarily give me anymore information, possibly even more confusion. Some folk like to know the technical ins and outs and some like to know what does it mean in terms of my health, what I can do to improve my health and how can I have a sensible helpful conversation with my health providers. My first CT angiogram had technical stuff all over the letter I was sent. I had to give it to my nurse niece who worked in a cardio Cath lab to interpret it.
I think the bit that’s often missing when we’re sent our results is what does this technical stuff mean to me. Am I ill? Is it treatable? What’s the prognosis? My cancer care was much better at this because there’s been far more work in that area in terms of communication with patients.
Yes I feel the same and just testerday said I must start googling some things such as ablation etc as I find it so helpful with all the stories and info given from our members, and it's given me the insight to understand cardiology better and enquire further, imagine I didn't know what EF was or how it impacts until I read it on forum, never was it explained to me, and I was shocked when I realised how significant it is, so thank you everyone for all your stories
Hi Heather,I’m a recently retired nurse and I don’t know what some of the abbreviations mean.Some of the technical stuff I don’t need to know at the moment .I just get the gist of what is being said.
Before I joined this group I was reading all the text books and I’ve got a pulse oximeter to keep an eye on my oxygen levels and my heart rate.I googled stuff and read research.The doctors sometimes think I’m funny.
What really helps me most is knowing that I’m not alone and I can enjoy my life despite the heart problem.I haven’t felt so anxious since I have been able to talk to people here.
Nurses are told not to use abbreviations and technical language that exclude people.
You are not alone in not understanding what many acronyms stand for in when used in the profession you work in. I worked in the UK rail industry for a short time where acronyms abound and in a very senior meeting one day, one particular term was being discussed in depth, and after a while somebody asked what it stood for and out of about ten people only one person knew!
Hi all, this post reminded me so much of when I was in hospital, suddenly surrounded by staff I was told a heart was on the way and it was looking like a match, all prep was done but then my cardiologist appeared and told me the antibodies didn't match. I asked him what they were as I only had a rough idea, he launched into a speech explaining the whole thing well it could have been Chinese backwards for all I understood it was all medical terms, to this day I still have no idea what they are in relation to a transplant. Thankfully the next heart was a perfect match no explanations needed. Char
Thank you for raising this. I am new to this forum having received my pacemaker on 13 January. It was a completely unexpected diagnosis and I am really struggling to come to terms with it and have found this forum so helpful and comforting, but do struggle to understand some of the posts. Thank you for allowing me to participate and it would be so helpful to feel even more included by being able to understand more easily the concerns and content.
Sadly there are some posters who do try and make people feel that way and I can only encourage you (and others) to ignore them and who knows they may just give up.
Everyone on here has something to offer and if asking for something to be simplified makes your experience better then just say it.
What I will say is that there are more helpful and supportive people on here than not.
Hi I hope you’re all well on this forum I received a report after hospital visit talking about a load of stuff which wasn’t even discussed with me. One was severe pulmonary hypertension sPAP 60 mmHg. I looked at it. Checked through my other reports and there was no mention of it. BHF cardiac nurse explained it to me, high blood pressure going from my heart to my lungs. I’m still none the wiser as my actual blood pressure was 107 over 73. I googled it and exactly the same information she gave me was what Google gave me. I also asked her what MR vena contracta 0.35cm was, because that was on the same report, but she couldn’t tell me, neither could Google. Someone here already pointed out many times we use the abbreviations the doctors use in their report. I only click on medical problems I have.
Thanks for starting this discussion Heather. The short version
Whilst I agree it is better to explain terms and acronyms I prefer to get a response that I have to research than get no response. I also had not reviewed till now the pinned resources 🤣
- Can we get common terms added to the "Abbreviations and Acronyms" e.g LVEF
- Is there a manual or guidance on using HealthUnlocked search better and curating valuable posts?
- Is there a simple checklist I could use to review and improve my posts?
The longer version
I agree that I should consider the audience more and I probably should have a checklist of yours and BeKind's guidance to hand as better practice when posting on any social media.
It would be nice if acronyms and technical terms generated pop ups (like the emoji's do) or hyperlinks to definitions but that may involve changing the platform?
I first came here looking for support "in crisis" so the pinned posts weren't important. Only now have I realised how useful they are. I am also dreadful at curating useful posts and find the Health Unlocked search is poor. For example today I saw a post explaining in detail (and laypersons terms) the difference between heart failure vs heart desiese. Can I now find it? No.
P.S my use of LOL caused my kids some amusement in the past they also plan to give me a dictionary of emoji's as I never use those correctly.🤔🤐 so I tend to delete emojis before posting.
Thank you for saying this. I got tired of interrupting my reading of this forum to look things up on Google so I don’t bother anymore,even though some things might be relevant to my own problems.
My issue is blocked arteries and I have had a bypass and 2 stents fitted so this is the area I think I can support people with, I won't say advise as I certainly don't have the knowledge (or training) to do that and I usually end up saying to get some medical attention.
'A little knowledge can be a dangerous thing' and boy is that true.
I will (of course) continue to share my own experience of bypass/stent/medication/drilling of arteries to fit stents/angiogram etc where I can but sometimes I don't know what the issues are.
I mentioned this post to my OH and said it was about AN but she said PO and MMOB or you’ll give me an HA or even worse a CA and that’s the last thing she needs with her SOHBO coming up. Sometimes I feel like LMAO but then that would leave me HA.
Maybe we should write about our jams in cockney rhyming instead? What’s CR for ejection fraction?
I am so glad that you are mentioning the problem. I am comparatively new here with my heart problems. I am still to see my cardiologist and so far i had poor medical care/contacts, so I often find it difficult to understand the language here.
Hello Heather, thank you for highlighting this on our posts. I too, myself, end up rather confused by lots of the abbreviations in the posts and rather than seem ignorant I find myself using the site less and less and I got fed up looking on Google for the correct terminology. I am relatively new to the site and would really like to continue either contributing to the posts about my own experiences or asking for advice, but don't bother anymore as once the posts pops into my e mail account I just delete it. The only reason I didn't 'delete' today was because your post was top of the comments/posts and I could read it first. Thanks again and take care.
Another possible way to explain the vagaries of EF is is a blood volume reading that is found from an echo cardiogram and if you haven't had one I would skip this bit!
I totally agree with what you have said about the “Jargon. used and lack of interpretation in these reports.
I would suggest that everyone in these posts have a right to ask for the results to be explained as part of their consultation visit with their cardiologist or specialist nurse.
Remember the consultation is about you and for you, so you should be able to ask, what these difficult abbreviations mean, as you are not medically trained .
Good healthcare professionals will not or should not mind you asking, as it is part of their job to make things clearer, not confusing. ( Do not feel stupid for asking) which is the only other reason why people do not ask. It is better than submitting a report on a website such as this one or Google trying to desyher it yourself.
Further more the hospitals should have a Patient information leaflet , or webpage if they are advanced with how they they present the abbreviations relating to cardiac problems/ events and treatments.
Much the same as pharmacist do, when they give you new tablets ( they ask if you have any allergies, then they explain how to take your tablets) and the reiteration are the leaflets which are inside the medicine boxes .
I hope this helps. I ask every time, because it’s about me and for me, it helps with meditation compliance. If you have an understanding of what has happened to you, where the problem is and how you can help keep yourself well, are steps in the right direction I’d say.
👏🏼👏🏼👏🏼Well put Heather, sometimes I have no idea what is being discussed, it is easy to feel excluded if one is a newbie.,,,,, but the fount of knowledge available from more experienced members is just wonderful, and have saved my sanity from time to time for which I am very grateful.
thank you for that explanation it all makes sense now and I understand now. Maybe they can’t do anything for me as I’m in heart failure stage 2-3. I’ve been sick recently with chest infection and I feel I’m possibly at stage 3 fully or even 3-4. My Gp gave me salbutamol pump to use and I find it stops me coughing my lungs out. He said it will open my airways.
I think the ejection fraction comes from the left ventricle. I think it’s to do with measurement of blood the heart pumps out. Most people I talk to the right side is fine, mine is, but the left always have problems. If I’m wrong maybe someone can correct me or explain it better. I’m not good at explaining things. My ejection fraction is now 23% at one stage it was 15%, It should be 55% and above
Hi Heather I completely agree with you. abbreviations do make posts more confusing. I’m a member of an amazing heart charity Pumping Marvellous, here is their glossary of cardiac terms, their website is full of useful information.
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