If you could rename Heart Failure, what would you call it?  

Degression?

by benedeni - 2024-04-05 14:12:52

Don't know, Gemita.  I agree the heart failure term is very depressing.  Heart Degression?  Of course degression means "going down, descent or decrease".  Could be a better term.

Also, with 100% heart block and a dual chambered pacemaker installed, would that condition be automatically defined as "heart failure"?  Oddly, no doctor has ever mentioned this to me and when I google, it says "One of the most serious risks of heart block is heart failure" so guess that answers my question.  Still..  a bit confusing.

I agree!

by USMC-Pacer - 2024-04-05 14:28:24

I've spoken with my cardiologist about this diagnosis and asked him a few questions. If CRT reverses my HF due to PICM, can I stop the medication? Prior to the CRT implant, the medication wasn't doing squat for the 2 years prior to my implant! Now that CRT is improving, and hopefully reversing the HF, can I stop the medication that wasn't helping?

His response was one of Gemita's terms above, then I would have HFiEF (improved or recovered) and I would be on these medications for life!!! Even though they didn't help? So once they stick you with that diagnosis - HEART FAILURE - you're stuck with it. It is a depressing wording and folks have recovered from it. I just think when there's a known insult that caused it, it shouldn't be a life sentence with expensive medications, that for me did nothing. 

When I pushed the issue, he told me we could cross that bridge when we get to it. Well, my echo is on Tuesday.. fingers crossed, end of rant :)

Edited to add: 

They always use terms like mild, moderate, and severe.. how about mild, moderate, or severe cardiac insufficiency? Rather than an EF number which most people have no clue what that is.

Heart failure rename

by Good Dog - 2024-04-05 14:40:15

These could be alternatives, but I'm not sure if any of them are any better:

Reduced Cardiac Output (RCO)

Compromised Cardiac Efficiency (CCE)

Reduced Cardiac Efficiency (RCE)

Non-Optimal Cardiac Efficiency (NOCE)

Reduced Cardiac Ventricular Efficiency (as a percentage) (RCVE)

Cardiac Ventricular Efficiency Reduction (as a percent) (CVER)

Or what if we just call it what it is: "Low EF" or "non-optimal EF"

Late Edit:

If we find an appropriate name without such a negative connotation, the problem becomes how to stop people from using the name/term "Heart Failue"?

That is all I have...............for now

It doesn't bother me

by atiras - 2024-04-05 16:19:13

We can't rename every depressing health condition. 

Great suggestions

by Gemita - 2024-04-05 16:21:27

Benedeni, treated heart block with a pacemaker won’t automatically lead to heart failure, and heart block certainly doesn’t mean that you have heart failure.  I suppose though with a high burden of RV pacing and with an arrhythmia like AF, you would certainly have some risk factors, so they will no doubt keep an eye on your ejection fraction.  I think your lifestyle though, getting away from stress and living such a natural, healthy lifestyle, will serve you well.  Thank you for your alternative heart failure definition.  "Heart Degression".  That is new to me.  

USMC-Pacer, you ask some interesting questions.  I have always been told that it is a combination of treatments that will help with heart failure, but of course you are quite right to ask these questions.  PiCM from RV pacing should be corrected by CRT since clearly the meds could not reverse the condition which was caused by dyssynchrony in the first place.  Until your ejection fraction reaches a healthy level you might want to keep the meds going, but as soon as you reach a normal EF, I would be inclined to ask whether you could slowly come off some of your meds and see what happens.  It is your life and your decision whether you want to take powerful heart meds forever.  Medication is not without risk either especially as we get older with declining liver and renal function.  I like mild, moderate or severe cardiac insufficiency.  I could live with that definition

Oh Angry Sparrow, that is music to my ears when you say “I fought that term, I hated it.  Now 20+ years later,  I just ignore it.  In my mind could not rename the condition appropriately”.  20 + years later, now that sounds like real success and just confirms how misleading the term heart failure really is.  Cardiac condition sounds perfect too.  I am glad you have reminded us that you have a “condition” not a “disease”.   That is so reassuring.   Thank you.

Good Dog, they are all excellent suggestions and alternatives.  Anything has to be better than heart failure.  I like Reduced Cardiac Output or Reduced Cardiac Efficiency and we could use mild, moderate or severe to describe the level of reduced cardiac output or reduced cardiac efficiency.  You have done well to find these.  

when something is found in our chart

by new to pace.... - 2024-04-05 17:26:31

This is why it is important to check our online patient portal.  To see what is written there.  An to find out what it means to us. To make sure it really belongs in our chart and not some one else's.

new to pace

Atiras

by Gemita - 2024-04-05 17:28:20

There is no doubt that the term “heart failure” can be misinterpreted by some patients and this may cause distress.  If we say renal failure, we are implying the need for dialysis or transplantation but it may not mean this with heart failure, so a diagnosis of heart failure could perhaps be misleading or cause unnecessary anxiety, particularly if the patient's level of heart failure is only mild.  I would like to see the term heart failure phased out, but what to replace it with?  You have faced a great deal and continue to bravely do so.  I hope you will have many 'quality' years ahead with your new heart.  

A new definition for heart failure?

by Gemita - 2024-04-06 00:57:04

new to pace, yes I need to clarify what is written on my recent consultation summary report posted on MyChart.   I don’t believe I have heart failure (with a normal or preserved ejection fraction) but this is what the report is suggesting. This is the first time I have heard about it.  Seems it was first seen in 2022.   Anyway, I think this is wrong, but I can wait until I get my stress echo to ask the question.

R2D2, just a simple definition suggestion change from Congestive Heart Failure to Cardiac Deficiency from Good Dog and you feel better already.  I am glad, what harm is there in that?  Yes emergency doctors deal with life and death situations and Congestive Heart Failure of a chronic nature, probably didn’t worry them at the time.  Cruel I know since that diagnosis must have been alarming for you.

Explanations

by Penguin - 2024-04-06 06:09:02

Had I been told that a low EF % indicated HF at the start of my cardiac journey I wouldn’t have heard anything beyond the implication that my heart had failed. The label would have been terrifying.  In the event, I wasn't told anything at all and found out years later.

If I was told now that my diagnosis was HF, I would be very concerned, but I’d be more focussed on what the label means, how accurate it is, treatment options and the prognosis. I suppose I’m more interested in the explanation that follows, than the label these days. 

As Atiras implied you can’t soften bad news, if it is bad news. However, you can soften a label by explaining what it might and might not mean to the individual.

I've also read...

by USMC-Pacer - 2024-04-06 13:52:11

..that EF tests via echocardiogram are subjective. Depending on the skill of the tech and reviewing doctor it can fluctuate between 5 to 10 points. In extreme, if an EF is 55 and they say your EF is 45, do they label you with HF? A year later when another tech comes in and interprets your EF correctly at 55.. are you now labelled as HF recovered? 

Sorry, this is my brain doing circles like it often does.. especially when I'm trying to sleep :)

Latest definition of heart failure?

by Gemita - 2024-04-06 14:57:35

It seems Cardiologists cannot always agree on a uniform criteria for the definition of heart failure because it is difficult to measure cardiac function and dysfunction to determine the extent of failure.

I attach a link for anyone interested, which discusses heart failure definitions.  It confirms that there has been global ambiguity in the interpretation and definition of what constitutes heart failure (HF).  The diagnosis of HF primarily relies on signs and symptoms that are neither sensitive nor specific.  The new universal definition, with the inclusion of raised natriuretic peptide levels in the diagnosis of HF, elevates the diagnostic standards of HF to be more comprehensive, reliable, and objective.

New universal definition introduced in 2021 states:

HF is defined as a clinical syndrome with symptoms and/or signs caused by structural and/or functional cardiac abnormality and corroborated by elevated natriuretic peptides and/or objective evidence of pulmonary or systemic congestion. 

Not sure that that definition is any clearer or concise but it is a step forward!

Natriuretic peptides are early and important markers of congestion, even in the absence of symptoms of HF. The inclusion of natriuretic peptides as part of the new definition establishes an objective diagnostic standard for HF because they are (1) myocardium‐specific, (2) dependent on intracardiac volumes and filling pressures, (3) elevated before symptoms/signs of HF surface, and (4) relevant to a range of cardiac abnormalities, including and not limited to the systolic function, diastolic function, valvular heart disease, right HF, and atrial fibrillation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9254673/#:~:text=1.3.-,New universal definition,of pulmonary or systemic congestion.

USMC-Pacer

by Gemita - 2024-04-06 15:19:55

I would echo (pun intended) what you are saying.  Echo results can vary greatly for many reasons:  transthoracic vs transesophageal imaging (transesophageal being able to see more because of the proximity of the oesophagus to the heart;  positioning issues, body habitus variables during transthoracic imaging may obscure views.   Both issues would be ones to watch if they were truly believed to be present, but also good conversations to have with your doctor to see if the visualization quality during the exam was optimal.  It is not uncommon for things to show up/not show up on echos that have the potential to be clinically significant, or not significant.  Operator experience is another important variable as you rightly say.

Once labelled with heart failure not sure when your records would be corrected to reflect any errors or when your doctors would agree to stop some or all of your meds?  You shouldn't get labelled with heart failure with an ejection fraction of 45 though from an echo alone.  Suggest below 35 would confirm possible heart failure 

USMC-Pacer

by Gemita - 2024-04-07 06:43:49

I meant to say good luck on Tuesday or with any forthcoming investigations.  I hope your EF will have recovered sufficiently for them to make a decision about your Defibrillator and heart failure status.

Penguin

by Gemita - 2024-04-07 07:50:02

Penguin I intended doing a separate comment to you, hence this new one.  I think you have made the point very clearly, “had I been told that a low EF % indicated HF at the start of my cardiac journey I wouldn’t have heard anything beyond the implication that my heart had failed. The label would have been terrifying” . . . This is the reason why the definition heart failure can be so detrimental to some patients when they are already at their most vulnerable.  Since there are so many ways of describing their unique form of heart failure, so many stages and types of heart failure, to put all forms of heart failure under one general umbrella is in my opinion, far from helpful.

In my experience a caring doctor who is also a good communicator can most certainly soften bad news and change the outlook of the patient to one of optimism.  It has happened to me several times in my life and what a difference it made.  Unfortunately in the present climate I hear too often patients complaining of limited time to discuss their concerns following a serious diagnosis like heart failure and come away with multiple meds to take instead without further explanation.  It doesn't always work to allay fears or to successfully treat their condition.  

I am glad that your ejection fraction has recovered and that you were saved from knowing the potential implications of a low ejection fraction at the time.

Mr Grumpy gives his sixpenn'orth....

by crustyg - 2024-04-08 07:10:29

I think the issue is all in your minds.  Heart Failure describes exactly what's going on, just as Kidney Failure or Thyroid Failure does.

I *entirely* agree with you that HF does *nothing* to cover the huge range of degrees of Heart Failure (any more than Kidney Failure does, although we do tend to talk about End-stage Kidney Failure for those needing dialysis).  I suspect this is what's at the root of this issue (I was going to say at the heart....).

Perhaps we need to talk about mild HF, moderate, severe etc.?  Or perhaps it's inevitably tied up in our minds with Heart being essential to life => so it will always sound terrifying if we let it.

You give good advice crustyg

by Gemita - 2024-04-08 08:00:20

Good morning Mr. Grumpy.  There is a lot of truth in what you say.  A family member has survived breast, kidney and bladder cancer and coped well with each diagnosis and  treatment, but she has fallen apart with the diagnosis of heart failure and just cannot see a way through her fears.   She has been offered psychological support which she has firmly rejected, asking instead for better care from her heart failure team to try to reverse her condition.  Her ejection fraction has improved but not her symptoms

what is a name

by new to pace.... - 2024-04-08 12:16:38

why not just call it "heart issues".  It can mean a lot of things.

new to pace