Just joined the heart failure club😬 - British Heart Fou...

British Heart Foundation

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Just joined the heart failure club😬

Bl1m3y profile image
Bl1m3y
•19 Replies

50 years old. Unexpected turn of events.

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Bl1m3y profile image
Bl1m3y
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DaiHatsu profile image
DaiHatsu

A lot to take in, I guess?

What are your symptoms and what's the impairment?

I find 'heart failure' to be a very catastrophic term and it can cause distress and panic when you're first told you have 'heart failure'.

I prefer to look at it as I have 'reduced function'. Depending on circumstances, 'heart failure' can be managed and you can still live a long and normal life.

My heart attack was in 2011, I had an emergency angioplasty to save my life and my ejection fraction dropped to around 40%.

A decade later, I noticed some issues and found it had dropped to 32-33%... so very much 'heart failure'. But modern drugs, and another angioplasty has helped. My 'lead' cardiologist reckons I'll make 80 years old...

The point is - I lived a normal life and still do. I run, swim, cycle, I compete in short course triathlons, despite my 'heart failure'... so it's not the end of the world. Just keep thinking that it's a reduction in efficiency, rather than failure!

MadBunny profile image
MadBunny in reply to DaiHatsu

Hi. Thank you for sharing your experiences. It's helped to reassure me.

Cosychair profile image
Cosychair in reply to DaiHatsu

Love this reply, I agree heart failure is such an awful term. It took me a while to deal with it. Now I'm on the meds I'm feeling so much better. It's good to read about how people are dealing with their problems.

baly_2023 profile image
baly_2023 in reply to DaiHatsu

Love your post, it's true some of the terminology makes heart conditions sound so terminal.

With the medicines and the right sensible approach to life these things can be manageable, can be worrying but that comes with the package I suppose.

DaiHatsu profile image
DaiHatsu in reply to baly_2023

The one thing I'll add is that 'plumbing' is likely to cause reduced efficiency, but once you know about it and can treat it / control it with drugs it's unlikely to kill you.

'Electrics' are much more of a worry! They're the thing that can make you keel over without warning!

MadBunny profile image
MadBunny

I might be joining you shortly. I'm waiting for echocardiogram results. It came out of the blue for me too. Rheumatology had requested some checks because I had bad fatigue ( not unusual for RA) . One result suggested heart failure. I was so shocked. And terrified. The GP tried to reassure me the term HF isn't necessarily as bad as it sounded , but it didn't help.

I just wish I could get the results. The worrying is really getting me down.

BeKind28- profile image
BeKind28-

Hello :-)

I am sorry to hear unexpected events have brought you to the Community but on a positive the more people get to know what has happened you will get lots of support and people will share their experiences and what does help I think you will realise you are not on your own which does for me help a lot :-) x

LowCarbLover profile image
LowCarbLover

The first thing I would say to ANYONE with this diagnosis is that "heart failure" is a horrible term. My cardiology nurse agrees with me ... in fact, she gets very upset when that term is used. With all the options that doctors have these days, this condition is much less dire. A better way to think of it is "weakened heart - with many options for improvement."

You are likely going through the shock period that many of us went through until we realized the reality of treatments available in 2024. My own doctor referred to Entresto, for instance, as a miracle drug. And I have heard "miracle drug" said by many others.

So please know that things have changed in the last several years and treatments have improved by leaps and bounds. Joining a group like this will also make a big difference.

One last thing, I enrolled in a Cardiac Physical Therapy course. And, among many other benefits, it showed me that I am not the fragile flower I thought I was when I was diagnosed. In fact, I became even stronger than BEFORE diagnosis. Also, the nurses were wonderfully informative ... more so than even the doctor. You might want to look into such a course.

Best of luck and remember, you are among friends here.

MadBunny profile image
MadBunny in reply to LowCarbLover

Although I'm not the original poster I would like to say a big thank you for your reply. It's reassuring to hear these things. I'm yet to get a confirmation of what is wrong and I'm beside myself with worry.

Stent2024 profile image
Stent2024 in reply to LowCarbLover

Is this course the same as the nhs cardiac rehab ? I m awaiting appointment following stent procedure , but been warned there is a long waiting list , which is frustrating as I’m keen to get more physical active . Have started walking but want to get a lot fitter

LowCarbLover profile image
LowCarbLover in reply to Stent2024

I think it depends on what's available in your area. Your cardiologist should be the best person to answer that question.

FYI, I live in the US so things are a bit different here. I found this website through a video on youtube titled "Cardiac Rehab at Home - Level 1 Programme" - this is one of a series of videos offered by the British Heart Foundation where they guide you through exercises that you can do at home.

Nomis21 profile image
Nomis21

HiJust joined also at 52.

Known for a while things haven't been right (long story) but echo and other tests plus symptoms have lead me being referred to the club after speaking to a member of the cardiology team yesterday.

Qualipop profile image
Qualipop

A horrible horrible term. Your heart is not suddenly going to fail; it's just reduced function ie not as strong as it should be but it can be improved with treatment. Do remember that a "normal" ejection fraction although give as a percentage is NOT 100%. It's usually around 45 to 60%. There are many people on here whose EF has improved on medication. LOok at what lifestyle changes you can make like perhaps losing weight, changing diet, not smoking, more exercise if necessary. Discuss with your consultant what could help you.

Petermagennis profile image
Petermagennis in reply to Qualipop

Good luck and i know it causes worry and anxiety but gentle, consistent excercise will help.

Petermagennis profile image
Petermagennis

I was in my near mid 50s i thought life was over. When i was first diagnosed it was classified as severe, got put on my medication regimen a year later changed to moderate, after working like a demon from home during the pandemic, i was told i was very overweight and possibly diabetic. So i did two things, i made the effort to walk at least 6000 steps on average, i also went to see a traditional chinese doctor, had tui na massage, accupuncture and herbal medicine. One month later i had an ultrasound scan, my impairment is now considered minor, i get a blood test on Monday to check my blood sugar. Im sure that will be okay. My advice is you may not wid

Petermagennis profile image
Petermagennis in reply to Petermagennis

Wish to try TCM. At the very least take up some form of gentle steady exercise. Walking is ideal. Don't try jogging or lifting weights that puts too much strain on the heart. If you don't have s pedometer just walk for 30 minutes at a brisk pace, but start off easy and work your way up. I even did the 10000 steps thing but reduced that when the weather turned nasty.

Petermagennis profile image
Petermagennis

And looking at the other users replies, i agree don't use the term heart failure. Use the term and think of it as heart disfunction. You don't calk IBS arse failure, do you?

Grasshopper1976 profile image
Grasshopper1976

Hello, Bl1m3y I too have joined the HF club. Diagnosed last year back in July I've hand an Echo and heart MRI my EF is 51% I am on Entresto 24-26 mgs and Bisoprolol2.5 mgs, plus and medicine which is for Diabetes but benefits in HF called Dapagliflozin 10mg, my EF has gone from 35% too 51 % currently my symptoms are not to bad. Shortness of breath after physical activity, the tiredness and fatigue is a little better. Not the best news granted but modern health care and change in lifestyle makes a difference. I've had sometime to take on board. And trying to remain positive. And make the time count. My good wishes go with you.

Peter

LylaR profile image
LylaR

I received a letter last week from my cardiologist referring me to the heart failure clinic which has really upset me but feel reassured after reading all your replies.

I was quite active before my heart attack , not overweight, vegetarian , so it's all been unexpected.

I need to start increasing excersize again but get breathless and light headed, but may partly be due to medication.

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