Heart failure - what's in a name? ext... - British Heart Fou...

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Heart failure - what's in a name? extract from an article.....

Calliope153 profile image
16 Replies

The legendary Nobel prize-winning pioneer cardiologist Dr. Bernard Lown has had a lot to say about his colleagues who use what he calls “words that hurt“. He once described this cardiac condition like so:

“Heart failure is not a disease. It’s just a description of clinical syndromes. A heart failure prognosis is no longer what it used to be; much of the damage that occurs to the heart may be reversible and the symptoms controlled over decades.”

And the words heart failure don’t even accurately reflect the definition of this condition: essentially, that your heart is not pumping blood as well as it should.

whole article:

myheartsisters.org/2019/09/...

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Calliope153 profile image
Calliope153
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16 Replies
Lezzers profile image
Lezzers

Thank you for the link, interesting reading. Would you mind if I shared the link to another support group I'm a member of?

Calliope153 profile image
Calliope153 in reply toLezzers

Please credit Carolyn Thomas Heart Sisters blog. She is also the author of "A Woman's Guide to Living with Heart Disease" a book I found really helpful after my heart attack. Her weekly post is always informative.

Sunnie2day profile image
Sunnie2day in reply toCalliope153

I read your post about a half hour ago - went straight to my favourite online bookseller and bought the book. Thank-you for referring to it in your post, I might never have heard of it without your mention.

SpiritoftheFloyd profile image
SpiritoftheFloyd

Thank you for posting this - an excellent article.

Two days post heart attack/cardiac arrest, the team of doctors gathered around my hospital bed and told me no to worry but the echo I'd had that morning confirmed I had heart failure. As the article says after the word failure was delivered I stopped hearing anything else that was being said.

I see that the idea of using the word failure may convey a sense of urgency to your predicament that would motivate you to heed the advice , but agree that frequently the message has the opposite effect in which the patient becoming depressed and demoralised.

I feel into the trap of being demoralised when I got home, the CPR I'd received left me in quite a lot of pain and with the word Failure running around in my mind, I frequently wondered what was the point of saving my life if I was likely to die fairly soon from heart failure!

As the effects of CPR went away I started to talk to people, especially the staff in cardio rehab and started reading up on the subject and slowly the true picture of what heart failure actually is began to sink in. Nearly 9 months after my heart attack I'm now quite OK with my condition, but personally I prefer to call it Impaired Heart Function.

I'll be forever grateful for the care that was provided by the NHS to get me back to where I am now, I just wish we could, as the article says, move away from such a devastating statement as "you're got heart failure" to something less frightening.

The BHF produces an exceptionally helpful and informative book - Your guide to heart failure, link below. I've asked this question a few times - as the message of you've got heart failure is I imagine most frequently delivered to patients in a hospital bed, why don't heart and chest hospitals carry a stock of these booklets which they can hand to patients at the time of announcing heart failure? I certainly wish I'd seen this book a lot earlier that I actually did

bhf.org.uk/informationsuppo...

Rosei profile image
Rosei in reply toSpiritoftheFloyd

I went to visit my sister-in-law in a well known London hospital, the ward was named Heart Failure Ward, not exactly helpful.

SpiritoftheFloyd profile image
SpiritoftheFloyd in reply toRosei

That's terrible! How to depress a patient immediately on entering.

Milkfairy profile image
MilkfairyHeart Star in reply toRosei

Yes that is awful!

where was that!

Rosei profile image
Rosei in reply toMilkfairy

St George's

Milkfairy profile image
MilkfairyHeart Star in reply toRosei

Thank you.

Bigbrian profile image
Bigbrian

Hi

Great story, when the cardiologist said I had heart failure the next thing I said was how long have I got......I never heard a thing about his reply or what he said after the words heart failure, luckily my wife was there with me and took it all in or otherwise I would have left the room thinking I was a gonner, with who knows what consequences. Even now I take her with me to appointments because when they say heart failure I shut down again and don’t listen, must be a “fight or flight” thing. Plus everyone in the heart care industry will tel you depression is a side affect and needs to be looked out for.....change the name for a start..........!

Heart Inefficiency is what I call it.

Milkfairy profile image
MilkfairyHeart Star in reply toBigbrian

Hi Bigbrian

I too wish they would use a different name. It is called cardiac insufficiency in other languages only HF in English.

I was involved as a patient rep when my local CCG commissioned the new community Heart Failure service.

I asked for a different name and for a hopeful approach as I know how my late father reacted to being told he had Heart Failure....he gave up.

It is The Heart Function Improvement Service, with Cardiac Rehab, Clinical Nurse Specialists and a Clinical psychologist.

My Cardiologist is the Heart Function Improvement Consultant lead.

Having a second pair of ears is so useful at appointments too!

Bigbrian profile image
Bigbrian in reply toMilkfairy

Hi

Maybe something we can all push on , I know my work thought I was a deaths door when it had heart failure on my sick line......

Maybe the BHF can champion this cause to get the name changed?

Milkfairy profile image
MilkfairyHeart Star in reply toBigbrian

Yes I agree.

Do you know about BHF Heart Voices?

The BHF is responsive to patients requests and suggestions

bhf.org.uk/how-you-can-help...

Adaboo profile image
Adaboo

Thanks for this I’ll show it to my mum as she is panicking over her diagnosis.

Milkfairy profile image
MilkfairyHeart Star in reply toAdaboo

There are also 2 really good support groups

Pumping Marvellous and Cardiomyopathy UK.

Lezzers profile image
Lezzers in reply toAdaboo

Yes, I would also highly recommend pumping marvellous, great support with lots of info and advice and very friendly

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