The New England Journal of Medicine website (NEJM.org) published an article entitled, "The Definition of Failure" on March 22, 2025. The author is a New Zealand epidemiologist who discusses his mum's recent heart failure diagnosis and the deleterious effects the diagnosis had on her life. The author proposes renaming the condition with a new term that will "balance the need to accurately emphasize the severity of the condition with avoiding a deadly ring of finality".
Given that atrial fibrillation is sometimes associated with heart failure I thought forum members might find this article of interest.
Brian
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DrBook
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Thank you for the post, I was labelled in heart failure nearly 2 years ago, I went home and planned my funeral and not being one to suffer from depression in my life this diagnosis had exactly that effect until a few weeks later I met with my heart failure nurse technician! I certainly agree that this terminology should be binned and if I can get to read the article I certainly will.
How would you describe the conditions of those who need a heart transplant then? They normally start off like the rest of us with hf hoping their hearts will respond well to either drugs, operations or procedures.
Surely it's obvious they have what's called Heart Failure Paul. It really doesn't matter that none of us like the word Failure or not.
I have heart failure & I dislike the description but I'm
stuck with it so have to be OK with that.
But I'm really not sure how I would feel if I was on a waiting list for a doner heart & I came across these posts & comments by many who don't even have heart failure,
let alone be in the extremely unenviable position of waiting for someone else to die to supply them with a donor heart, discussing why a damaged heart that can't pump blood sufficiently should NOT be called heart failure.
Adults & children all around the world die from a plethora of health conditions every single day, including heart failure.
If you & many others don't want to believe the heart is failing with a HF diagnosis, then surely the word 'Failure' shouldn't be of any great concern to any of you in HF context.
The fact is, like it or not, my damaged heart is unable to pump blood efficiently, therefore, as far as i'm concerned, it is failing me.
Long term medication may help, & might even increase my ejection fraction to near normal if I'm lucky, but if I were to stop taking my meds, I would no-doubt relapse & probably die eventually.
I've been of the opinion that it should be renamed 'Impaired Heart Function' at least that gives the impression that something can be done and not that you're at deaths door
Agree with this, or at the very least it should be graded like a cancer.
I understand it apparently is in some countries but I’ve never heard anyone refer to a grade. Someone whose heart function is only just under the normal range is added to the group whose heart function is at the lowest end of the scale it can be.
My friend was diagnosed with heart failure and refused to go into hospital for for tests etc. I pointed out to him that hf is treatable these days and going into hospital doesn't mean your not going to make it out. He did in fact admit a while later and now he's getting on well. Hf has the connotations of doom and rightly so needs to be renamed.
The majority who have HF are treatable but there are most certainly many cases where the heart does infact Fail.
There are people on BHF forum who had no other choice but to wait for heart transplants so what do we name their condition if not Failure of the heart?
Unfortunately, the meds for heart failure which are known as the 'Four Pillars' don't work for everyone, whilst some just can't tolerate them, so we most definitely can NOT lump all who have it into the same category.
HF is a Mongrel condition, just as afib is.
The more who understand that fact, the better for those of us who suffer with it.
We are all at different levels with varying Ejection Fractions, heart damage to different parts of our hearts, & some of us might have more damage than others, plus comorbidities will also obviously impact a weakened damaged heart.
We all suffer differently, some with no, to very few symptoms, whilst others can become bedridden.
Those with HF will have to take a cocktail of meds for the rest of our lives, drugs that can damage other organs long term. Hf is a progressive chronic disease, just as afib is, no cures for either.
I unfortunately have both but was recently told by a very well known member on this forum that I should feel grateful that I don't have cancer, that's despite the fact that Cancer can & does go into remission, plus more die from heart related conditions than they do of cancer each year. I've also had skin cancer, so some do really need to be more mindful with what they come out with online.
Although I too dislike the world failure (who doesn't?)
If our hearts are not capable of doing the job they're supposed to do by pumping blood around our bodies to vital organs then I'm not sure a better phrase exists.
We who suffer with any heart issue can understand feeling disillusioned. However, having a more positive thought process and making the most out of our lives is key to keeping optimistic about our future. A good attitude is half the battle. 🙃
A good attitude to any illness is obviously going to be of great benefit but a good attitude can't fix a severely damaged heart unfortunately, neither will wishful thinking.
Those who've had to undergo heart transplants & other organ transplants would no doubt agree with that.
Well I've got all three at the moment, permanent afib, HF and cancer. The first two are well controlled and I'm scheduled for surgery in April. I'm still here and intend to be for quite a few years yet!
The question now - how to convince the insurance and the medical facilities that “heart failure” isn’t drastically dangerous definition, as it sound. And we are AFIbers don’t dying just yet. 🤔
I agree that it’s a term where the use is so broad, it can create great fear in people. I’m not in heart failure yet. Perhaps a graded system - like many cancers. At least then people might understand that there are degrees of HF.
HF is already graded in the UK using the New York Heart Association functional classification graded 1 to 4, 4 being the most severe, I'm stage 3.
This is not aimed at you FF but in recent weeks I've been absolutely gobsmacked at how very little is known about HF on this forum,
especially considering it's what most who have a-fib seem to obsessively fear.
So much so that I think they think it might rub off if they dare to converse with those of us who do have HF.
The term Heart Failure also seems to upset & terrify some on here much more than those of us who actually have HF, it's all very strange.
I have 100% afib burden with HF but I often see others on here complaining & very upset who have lone paroxysmal A-fib with very few episodes. HF is much like afib as in it's different for everyone.
I’m not sure it can be compared. AF is the least of my worries but I don’t think the fear others have about it is not well founded. Some are pragmatic about it. I’m lucky, I’m so pragmatic I have no fear of my future but we are all individual and no one should be made to feel their fear is baseless, regardless of how often they have AF or if they will ever have to contend with heart failure.
I agree with it being different for everyone though. I have a genetic disease passed down by my mother. I watched my mother die of end stage heart and renal failure at 65 years of age. I’m now almost 60. My brother will go next. He’s just turned 60 and is in heart failure with an EF of 18 and twice being resuscitated after ventricular fibrillation. Does he win the heart failure challenge? Is there a winner?
I don’t mean to sound testy but fears are fears and to dismiss someone’s fear because ‘they only have paroxysmal AF with few episodes’ is kind of callous.
I wasn't dismissing anyone fears but trying to understand why some of those with paroxysmal afib were so terrified. I clearly pointed out at the end that afib & hf were different for everyone.
If those who suffer with lone afib can readily accept that it's a mongrel condition, then they should also be able to accept that HF is also a mongrel condition & not assume otherwise which happens alot. Talking of callous, I think it must be very harsh & callous for those who's damaged hearts do need replacing to read posts like this one.
I’m just sharing the reality of my condition—it’s not meant to sound terrible, but unfortunately, it is. I’d never dismiss someone facing heart failure or at risk of it, no matter how small that risk might be. Everyone’s fears and experiences are valid was my point and your posts come across that they’re not.
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