So severe heart failure -looks like always been there, im 47, have another disability which may have masked the H/f for quite a while . out of hospital few days ago - it’s wait n see how meds do. My issue is this . I plan everything, I have 10 different scenarios playing in my head - eg. We were moving house later this year etc my H/f is putting things on hold. Obviously no dr will give accurate timescales re: mortality , but I’d love even a ball park figure. It’s that uncertainty that’s actually the hardest for me and my wife to deal with. I know there’s been huge advances medically , does anyone have any accounts of other people or themselves regarding this. Don’t worry I won’t hold you to it - but I NEED to talk about it . Anyone felt or feel that way ??
Hf - ef 10%: So severe heart failure... - British Heart Fou...
Hf - ef 10%
Hi Scoopdogg
First of all, we're all different, so no two people with exactly the same condition will recover at the same rate.
For myself, I had a heart attack/cardiac arrest on 28th December 2018 - blue lighted to hospital and had 1 stent fitted. 2 days later, had a echo which showed my EF at 30%, discharged form hospital after 6 days with a big bag of medicines. Read on Dr Google that anyone with HF had a life expectancy of 12 months 😧
Went to cardio rehab where it was explained to me that Dr Google talks rubbish! Listened to what I needed to do, so gave up smoking, hardly drink, changed diet to a Mediterranean diet, lost 40lbs and got fit - and had an ICD fitted after arrhythmia that caused cardiac arrest. EF has now increased to 40-45% so heart is working a little below normal, but feeling really well and can exercise without any limitation, I was discharged from consultant last October and told to carry on maintaining my current lifestyle.
That's my story, as I said, we're all different, but with good care there's no reason why you can't live a good life, The medications that we're all on are amazing and can make a massive difference. There are a number of people on this forum who have lived an active life with heart failure for many years.
These are strange times with Covid19 so the normal processes are pretty much at a standstill, hopefully you'll get offered cardio rehab in the not too distant future - it's really really worth taking that up, it helped me enormously to get over the shock and to help me get re-started.
Good luck
Thanks for sharing your account
Hi Scoopdogg, your Dr's probably won't give you a lifespan because it's impossible to know. People can & do live for many years even with an EF as low as yours.
Medication, lifestyle, diet, exercise as agreed with your medical team, can actually improve your EF, my husband has gone from severe HF with an EF of 30 to mild HF with an EF of 51. He was diagnosed with HF when he was 57 after having had a massive heart & cardiac arrest when he was 42, he's just celebrated his 65th birthday.
It can take time for your meds to kick in & it can take time getting the meds right but you will get there.
Can I ask what meds you're on & if there has been any mention of fitting an ICD CTR-d? My husband has an ICD which has just been adjusted to pace his heart.
Hi thanks! Bisoprolol, furosemide, entresto, spironolactone.
Entresto, is a fairly newish drug around which is giving great results improving symptoms & EF.
I would recommend looking up the patient led heart failure charity called Pumping Marvellous, so much information & advice on their website, it is all 100% accurate & up to date information. They also, have a closed facebook group of the same name. If you do Facebook, I would highly recommend joining the group for support, advice & general chat with others who are or have been in the same position as you. There are members there who's EF has been as low as yours & is now much higher.
Hello Lezzers, how are you now? thank you, informative as always.
Thank you for your information about pumping marvellous, I shall also be looking at it. I am now waiting for confirmation as to when if I will have my second o/h op to replace the MV and TV after the AVR/bipass in 2018.
No one really knows our span, take life with both hands and enjoy it.
Take care and keep safe everyone.
Hi Roamie, I have everything crossed that you'll hear something soon about the op. Whilst we totally understand the situation at the moment it is difficult to be patient.
Do look up pumping marvellous, I really can't recommend them highly enough, I was having a bit of a meltdown recently and the CEO rang me 7o/c in the evening to give me some advice, very kind & understanding.
Also, if you do Facebook again I'd recommend joining their closed group. Such a friendly, supportive group, one member calls everyone his heart family. They also have a healthy hearty meal page, brilliant for recipes, or pictures of my culinary disasters!
Take care xx
Hello, sorry to hear of how you’re feeling. I think uncertainty is the absolute pits! My husband was diagnosed with Dilated Cardiomyopathy (DCM) about 3 years ago now. His EF was just 10-15%. It was all such a shock and frankly bewildering. As time went on and the meds did their thing his EF improved to 25% after a few months and at his last annual review a year ago it was 40-45%. As normal is 55% or so, that isn’t bad at all.
Our lives have definitely changed from how they were before - who knew medical Ill health retirement would happen. But we’re not big planners apart from maybe a holiday or two, so not being able to plan in detail hasn’t been a huge problem. It’s hard knowing whether or not to commit to something because we don’t know if my husband will have sufficient energy when it comes around. I think all any of us can do is muddle through as best as we can.
When it comes to mortality, please be very wary of reading Google articles. Many are not good science, inaccurate, outdated or simply don’t apply to you because the sample was, say, males over age 70 in the USA where diet etc is very different from the UK and the study is 20 years old. Stick to BHF, NHS, NICE guidelines and the big peer-reviewed studies on the US government website nhlbi.nih.gov.
Some of what we read says 5 years expectancy for my husband’s condition ...but the study saying that was based on elderly people with comorbidities which doesn’t match my husband. So it didn’t mean his life expectancy was 5 years either.
My husband was also reminded by the doctors he talked with that’s there’s lots of other things that could cause his death, or deteriorating health like the proverbial being knocked down by a bus, so don’t just become fixated on the heart condition. Instead live life! It’s hard to get your head around, it’s hard for your wife and family too. But somehow you will. Somehow life will move forwards. Things will become clearer as your meds settle in and your body adapts to them. It takes time, but you’ll find some equilibrium.
In the meantime, people on this forum are here for you and your wife and family. Feel free to shout out for support, a rant, a mean or a winge! We all do it from time to time. And the BHF nurses are absolutely fantastic too.
Sorry it’s a long post. I hope it helps. Best wishes to you and your wife.
Hi Scoopdogg, lots of great advice has already been given so I won't repeat that, other than reinforce what's been said about Google. I was 55 when diagnosed with severe heart failure. It was a complete shock and like you I'm a bit of a planner and like to feel in control of decision making. I went to google and deeply regretted it as it just worried me further, I became convinced I wouldn't survive long enough to see my son graduate University or fulfill retirement plans my husband and I were already making. I soon realised that the life expectancy studies on google applied to people diagnosed in the 70s, so not me, in my 50s.
With medication and few life style changes 12 to 14 months after diagnosis my heart failure had improved significantly. My heart function is still below the normal range, but only just. I'm getting on for 2 years since diagnosis now and am doing alright. I reevaluate what is and isn't important in life and dumped all the unimportant stuff, I've brought forward retirement plans and am confident I will be around next year to see my son graduate. I've also tried to let go of the need to plan and be in control, to accept uncertainty. That's still a work in progress 🤣
Everyone is different but if you go with the medical advice things can and do improve for many people with heart failure, it is not an automatic death sentence. There are many people on this forum who have been living with heart failure for many years, longer than me, they were and are an inspiration to me. Good Luck x
Hi n good morning scoopdogg.
I totally.understand your worries .
But spiritof the flyd is quite right in what is said .
We are all.different but the meds have advanced much as im told consistantly by my.heart rehab team that i never got the chance to meet due to this darned virus.
It is a scary time with thoughts battling through our heads.
There are some brilliant caring.knowledgable people on here .
I have always wanted to live by the sea .maybe its time i lived my dream 😊😊
I Can identify with you, my heart failure has been ongoing for 8 years as a result of cardiac arrest, in the past 6 weeks I have had 2 separate vt attacks which means no driving I am also housebound due to coro virus.
My cardiologist has suggested I try amiodarone but this I find difficult to try due to the terrible side effects, it's the not knowing that takes its toll, but nevertheless I just get on with life. What's the choice !
My hubby collapsed on a cross country race in 1989 when we were living in Germany and was diagnosed with Left and Right VT. He had an ICD implanted, at the time they were huge and heavy and only five people in the uk had them. The scar was larger than that for a transplant! He was in hospital for eight weeks in total. He was 38 and exceptionally fit.
He is now 70 and still amazingly fit. Eight years ago he had a heart transplant. He is a very positive person which has been good for him.
I am the worrier who needs to plan what is happening and be in control. When he had his first ICD my head was all over the place - Should we move back to the uk? We had just bought an old property to renovate in the uk, would he be able to do the work now? Should we sell it? Our daughters were at school in the uk perhaps they should now come to live with us; Would it be better to give my job up? Was he going to be able to continue in his job?
Would we manage financially if everything had to change? On and on the list goes...……….
Take a day at a time initially whilst coming to terms with the situation. Think positive thoughts when you can and plan for the future, there is one. Try not to let it all overwhelm you as you will find a way through it...…………………...When my hubby came around after the first major op. the song playing was 'Don't worry be happy' which seemed very appropriate then and still is now. Play it if you need a boost, it works.
Take care and I wish you and your family well for the future.
Thanks patsy!! What a positive story thanks for sharing and I will definitely think of youz when I hear that song!
Hi scoopdogg
I had severe heart failure in April 2019, bit of a shock at 51. Then to know has been a journey to say the least, an EF of 30 too. You are on the best drugs I see. Entresto is almost a miracle drug for heart failure so you are lucky to be on it, so for me I got an CRT-D fitted in January and it’s been amazing, a new man as my wife says. My problem was my heart bottom chambers not beating in sync, now they do and the meds are changing the structure, so stay in there and it will improve, and definetly keep taking the tablets. My heart failure at my last echo in March said it had gone from severe to very mild if any !!!!
Can’t beat it that.
Hi scoopdog, I too was diagnosed in 2016 with an EF of 10%, I thought that would be that but, like another respondent, a year down the line I was at 40%. That's with medication and exercise, I've been lucky enough not to have needed to go to hospital and they haven't put any CRTD devices in as my EF got to 40%with medication. Pumping Marvellous has a great patient support group and I saw today on there a woman celebrating her 59 birthday and 30 years with HF, so that gave me great hope and I hope it will for you too! Take care x
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