I everyone I’m 64 years and have today been diagnosed with chronic heart failure. Heart functioning at 25-30%. I’m on holiday in Lanzarote and only called doctor as was feeling breathless after walking and climbing stairs. I’ve had a very stressful 2 years in my family life and the only possible symptoms I feel I’ve had during that time is extreme fatigue, some spells of dizziness headaches and weight gain. No swollen ankles and chest pain. The diagnosis has come as a complete shock. I’m due to fly back to UK on Sunday. The Cardiologist says it can be reversed..can anyone shed anymore light on possible treatment, medication, surgery. I am seeing him tomorrow as was not in any state today to ask any questions. I feel like I’ve been given a death sentence,
chronic heart failure: I everyone I’m... - British Heart Fou...
chronic heart failure
HI Sundance60
That was a rubbish thing to be told whilst on holiday !
My husband had a cardiac arrest 2 and half years ago and was recently told he was in heart failure as an echo showed EF of 30 to 35. He has had no symptoms at all for 2 and half years and thought he was doing fine. This was just a routine check up as had not seen anyone since his cardiac arrest.
He was prescribed Eplerenone 25mg by the cardiologist.
Since then he has been trying to lose weight, reduce stress and cardio exercise 4 times a week - 20 minutes on the exercise bike. Also regular walking and keeping active.
He had another echo about a month ago and his EF is back to 40 to 45 which is what it was after his cardiac arrest and pretty much normal.
It is not a death sentence and there are plenty of drugs which can help. Also they can fit a pace maker if symptoms get worse. Unfortunately telling anyone they are in Heart Failure is very scary and I wish they would use another term ! My husband almost fell off his chair when we were told !!!
Good luck and keep positive xx
Hi Sundance... As your EF is in the 25-30% range, I expect they will put you on the "four pillars" of medication: "beta blockers, angiotensin receptor-neprilysin inhibitors (ARNIs), mineralcorticoid receptor antagonists (MRAs) and sodium-glucose co-transporter 2 Inhibitors (SGLT2i)" .. More than likely have some ECG's, tests etc to find the cause and draw up a treatment plan... I was at 13% EF over Christmas - I'm back up to 31% now and in the cardio rehab program. It sounds scarier than it is in most cases so don't panic... The meds can raise your EF and shake off symptoms 
Hi Besty. I hope you don’t mind me writing to you. I was diagnosed with HF in June with an EF of 21%. It has since gone up to 28% but my heart nurse has said to do no exercise at all except moderate walks. I feel sometimes I am wrapped in cotton wool a bit. She said I can’t even do the rehab programme until my EF is over 35% which is not now likely to happen. I see you are doing the programme at 31%. How are you getting on, and do you do any other exercises? Thank you if you have the time to answer me.
Hi there, I went through all that, not able to lift anything over your head, no lifting anything heavier than a tin of beans etc.. They will dial in your medication first before allowing rehab, My diagnoses was in October last year with EF of 13%, it was not until the end of July this year that I was referred to the cardiac rehab team, so maybe you might just have to wait a bit more, the EF 35+ seems strange as I am only 31% and I found it really helped me and I imagine my EF has risen after my rehab programme (I will find out next month as have an echo being done)
I was lucky enough to be referred to the one rehab place in the UK that has a whole team under one roof, 2x cardiologists, team of cardiac nurses, heart health dietitian, occupational therapist, physiotherapist, mental health and more They keep a very good eye on you and monitor you throughout the programme and tailor to what you can manage without putting too much strain on your heart and build from there. As I was one of the youngest in the group & was willing to change my lifestyle completely I had great results.
I am now with a local cardiac rehab class once a week and my cardiologist trusts me to go to gym now that I know how to monitor my condition.. So i do one rehab class and 2x gym sessions a week for an hour. They teach you how to read your body, im off the GNT spray now and I do have to pick the days a want to go into gym as I still have days where im very weak, but I still manage 3 sessions a week and am making progress doing a little bit more each time before getting too breathless.
I don't think I would have made such progress without the rehab as I felt like a had hit a brick wall with regards to recovery and had fear of going too hard and doing myself damage while exercising at home... Rehab changed that for me, learning to train safely and them teaching me to listen to my body made a huge difference, you feel like you get some control over your condition and can start planning time around how your condition is effecting your body day by day.
There must be a medical reason why they are not referring you I guess, or maybe its just too soon. I was 9 months out of hospital before I was referred, mind you I couldnt walk until January so 7 months. As your cardiologist what's stopping you going to rehab and let us know how you get on 😊
Thank you for your really comprehensive reply. I am seeing my nurse in a couple of weeks and will ask about the programme again. I hope you keep very well and will let you know how I get on. Thanks again. You are a star. 🙏🙏
Hi thebesty, hoping you can help: I got diagnosed with EF 25-30 yesterday and although I have no real symptoms doctor say it can be restored hopefully with medication- everything I reads says heart failure and a life expectancy of around 5-10 years! Did your cardiologist or rehab team have any info on this? Google is making me terrified. Thanks
Yes, every nurse or cardiologist said to ignore the 5-10 years - that is without medication and without lifestyle changes etc and that info is very dated.. Plus some of the heart failure medicine prescribed today has not even been on the market for 5 years so just ignore it... Im sure everyone googles it once diagnosed and then freaks out at the 5-10 year life expectancy. Just don't worry about it, you will start the 4 pillars of medication soon and start raising doses and getting the meds dialled in. Just listen to your cardiologist and talk to them about everything you want to know, make a list of questions to raise to get some answers, then you will feel more at ease.
Thank you so much for replying, I’m only 41 so quite shocked about it as have no real symptoms. Glad you’re doing well, really hope I can get my EF like you have 🙂
Yeah 41 is young eh! Its good that you have no symptoms though, I'd guess that's a plus point. Its a lot to get your head round at first, but you are in good hands, there is a wealth of knowledge on here and reading these boards about all different meds, symptoms and peoples experiences really helped me. Hopefully you will find the same, keep your chin up, loads of us in the same boat, you will be good 👍
Thanks so much, you’ve really made me feel so much better about it 😊
You're welcome, glad to help! let us know how you get on with everything. Im awaiting my results from my echocardiogram, fingers crossed I can beat the 31% EF from my last one... If I have not made an improvement then I will have a strop and chuck all the low fat / wholemeal / plant based crap ive been on straight in the bin and drown my sorrows in Haagen Dazs ice cream 😆
Fingers crossed for you it has improved… when do you find out?
I've got an appointment in Newport royal gwent on the 6th January, I think its for my angiogram results but I will ask while im there. They said I might be having a defib fitted and I have 3 narrowed arteries on my heart or something, I know none of it sounds great but aslong as its still pumping and I don't feel too bad, I'm happy 😀 ...
Have you started the 4 pillars of heart medication yet?
I have 3 types of medication at the moment and got told today I’m likely to need a pacemaker because of LBBB! Find out on 22 January. Have an MRI on the 9th Jan… just dreading everything!
Ohhh you are going in the massive bake bean can on the 9th then! I had one of them at Bristol, not bad at all to be honest, nearly fell asleep in there 😆 .. So your LBBB is like a electric signal issue then right, so pacemaker would sort you right out, is that how it works with LBBB? Wish you all the best with it all, its daunting but just smash through it all and get it done then you can hopefully crack on with some normality 👍
Good luck with your MRI. I got my latest echo results yesterday evening, ive gone from 13% to 31% now to 38% 😊 If i was 35% or under he would have put me in for a double bypass but as I'm 38% he is going to give me another echo in 4 months and see about fitting a defib thingymajig ( they are cool anyway, I will be like terminator with one of those bad boys! ) How are you feeling now and how is your progress with medications etc, you doing okay?
That’s great news! Bet you’re happy with that! What’s relief not to have surgery!
I’ve already been told about maybe having to have a defibr thingybob too!! Not looking forward to the MRI but be good for my appt on 22nd Jan with cardiologist! I’ve started today on the medium level of Entresto, also have dapa and Bisoprolol, so not for the 4 pillars yet! I still feel fine, no symptoms really and touch wood no side effects from meds!
how are you doing generally, how are your symptoms?
Yeah I'm well happy I don't need to be cut up! The defib things only a couple of hours gig and nice to know something is there to kickstart your heart if it throws a tantrum and stops beating for a bit... Your MRI will be fine, enjoy the peace! Got me off the phone for 40 mins.
Hopefully the 22nd Jan appt you got will go through your MRI results. I had to wait for the results to be read by some people in Australia before the results came back to Bristol for the cardiologist to tell me the results.... Mad eh! No idea why.
So three pillars maybe enough for you then? I think the missing one is spiralactone or eplerenone, maybe you don't need it if you feel fine, that's excellent that you are symptomless 👍 I still struggle with pain and breathlessness if I over-do it or if I'm out in the cold but I'm nowhere near as bad as I was at 13% EF, that was awful, so onwards and upwards. I want to be over 40% on my next echo 🙂
Let us know how you get on eh... Fingers crossed for good news. 🤞
do you also think the name ‘heart failure’ is misleading? I’ve read a lot about that in here whilst going through posts?
Yes... Its the crappest name ever! 😆 if my heart failed I'd expect to be dead! I think the other thing they called it was "Acute cardiomyopathy" which still sounds a bit scary but nowhere near as much as "heart failure" the other thing is that a prefectly healthy heart only pumps at around 55-65% not 100% as some figure, so that feels less daunting too
Hi I was diagnosed with Heart Failure in January no symptoms only found with a chest xray. I had an EF of 40% but since taking the four pillars of medication it’s gone up to 49%. I had an MRI but no conclusion as to where it’s come from but not hereditary so happy for my son. It is scary I live on my own and always thinking about it. Good luck ❤️
Hi Sundance60, you must have got a complete shock, but life's not over. I was exactly the same as you at the beginning of 2022, had the same symptoms. I have an ejection fraction (EF) of 25%, LV impairment and LBBB and when I asked the consultant if that can be improved upon, he didn't say no but he didn't say yes either. He said the way they look at it is they try to keep your heart stable with medication. I was supposed to get a pacemaker but it didn't go to plan. I still feel fatigue, breathless, and sometimes dizzy when standing from sitting, but I feel well and remain active. Please try not to worry too much and I hope all goes well. An update would be good.
H I they really do need to alter the words heart failure. Your heart isn’t failing it is simply not working as well as it should do, I was diagnosed with severe heart failure in 2018, I was already on certain medications as I had a mechanical aortic valve replacement in 2005. They prescribed a drug called Entresto and it’s made all the difference. I live a full and happy life both mountain biking and skiing. So try not to worry too much.
Hi,
That’s so good to hear, I got diagnosed yesterday with a EF 25-30% cardiologist put me straight into medicine therapy, said it should restore it back to normal. Also have MRI and CT scan to come in January… definitely not feeling like it’s ‘the most wonderful time of the year’ right now.
Everything I read on Google says it’s a death sentence and I’ll be lucky to live 10 years, it’s terrifying me.
I note on your bio that one of your interests is weight loss.
Does that mean you are trying to lose weight or already keep your weight at a good level?
A good diet, the right weight and appropriate exercise will likely bring that ejection fraction back towards 45% or more which is getting towards normal. No one functions at 100% heart efficiency. 60% would be considered very good going and rather less in older people with no health issues.
Hi Sundance60
I had a sudden onset of heart failure 8 years ago with an EF of 18%. I am now 76 and quite stable. It did take some time to optimise the medications but got there eventually. Looking back the greatest problem I had initially was due to interactions of the medications. I had a conversation with a different cardiologist who identified that my heart had improved significantly and that I should not be experiencing these symptoms. He suggested temporary (7 day) sensation of individual medications starting with a statin that I had had no problems with for over 12 years. The transformational difference in symptoms was apparent within 24 hours. This was one example of an unexpected interaction. There many others including a diuretic bumetanide and amiodarone,
I wish I had been aware of possibility of such interactions from the start as it could have considerably reduced the time for the optimisation. The good news is that the medications can make a huge difference to your life. If you do have any suspicion about side effects or drug interactions I would encourage you to discuss this with your cardiologist and don't just accept generic responses that you may receive.
At first I thought I would never see my daughters have children. But now I have 5 incredible grandchildren that give me immense pleasure. So try not to think about how bad you may feel at the moment. There are good medications out there that should help on your path to a brighter future.
Hi Sundance
Hope your UK care team will sort out robust treatment plan and link you in with specialists when you come home. Chase up help and support.
Perhaps you may also have a look on pumping marvellous web site as its offers a user friendly information on heart failure.
You will find helpful information about managing heat, food and fluids on BHF and Pumping Marvellous web site. A lot to take take in.
I was diagnosed with HF with LBB ( a type of heart block) 4 yrs ago out the blue.. made changes to my life style and still enjoying an active life . It’s a shock and the term heart failure sounds so terrifying.. but take a day at a time.
This support group offers fantastic help and positive stories.
Hi Sundance - have read all other answers and agree. This site is honest and stopped me from worrying. I’m still here and breathing and you’ll be sorted soon too. Enjoy your holiday !!!
Hi I too had a surprise diagnosis of heart failure at 64 years old. I thought I was fit and healthy. I had palpitations and gained weight, I felt it was a death sentence 😔 it is not. I take my medication and so far things are going well. See your cardiac team and I'm sure you will feel better soon.
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