I'm new here - just found out there's some damage to my heart muscle so I'm now on Ramipril and Carvedilol. I had a really successful mitral valve repair in 2006 and have had a wonderful medication-free and active 15 years since then so I feel really lucky.
I just wondered if people would mind sharing what age they were when they were diagnosed with heart failure. The online data I have found suggests an average age of 78, but I get the impression that lots of people here are much younger than that. I'm 49 and so I assume that a lot of statistics about survival after diagnosis may not apply to me... I hope so anyway as '50% of people survive for at least 5 years post diagnosis' looks a bit grim to me...!
Thanks for any answers - it's great to have access to such a supportive community of people going through similar experiences.
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nederlandse
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Hello and welcome to the forum.Sorry to hear you have been diagnosed with heart failure. I had a heart attack/cardiac arrest in December 2018 and was diagnosed with heart failure, 64 years of age at the time.
You are correct as regards the average age at diagnosis. I read a report some time ago by the NHS giving a breakdown of the age groups being newly diagnosed with HF in the year 2018, and by far the majority where over 75 with a large cohort being over 85.
Bearing in mind that a lot of these people in this age group will probably have multiple medical issues already - HF is just the latest. There's also a figure that pops up on Google that says 50% of people will survive a year after diagnosis - this figure looks startling, but there's some truth in the figure especially when you look at the people at the top end of the age scale - not wishing to be flippant, but if I get to 85, I would be expecting to pop my clogs sooner rather than later.
So. yes the the 5 years is a statistic that may apply, but it will be looking across all age groups with a diagnosis with the period being looked at. If you went and looked at a group of people say, between 50 and 60 at diagnosis the life expectancy would be much greater. At 49 , with medication and good lifestyle there's no reason you shouldn't have many years ahead of you.
Hopefully with an EF of 40% heart failure doesn't impact you too much. Try and get access to a HF nurse who will be able to advise you on lifestyle, diet etc.
There are a number of people who are members of the forum who are living well after being diagnosed with EF many many years ago.
There's also a very good support group/charity called Pumping Marvellous for people with heart failure, link below
Thanks so much for taking the time to write such a detailed reply, SpiritoftheFloyd! Haha yes, I was having similar thoughts about making it to 85 - that would be very nice indeed I am looking forward to having a chance to speak to my cardiologist about it all - as it is, I got a call from another cardiologist following my echo in March to say that they'd found some damage and I should start taking heart failure medication, but nobody has sat down with me to talk through what the diagnosis means and what I should do. Unfortunately, even though my EF is at 40%, I am experiencing quite a lot of symptoms (which is why I asked to have the echo in the first place) but I'm sure the medication will start to have a positive impact soon.
Thanks also for the link to Pumping Marvellous, I'm with them already and am finding it really helpful. I'm just trying to find a balance, finding out as much as I can about HF without it taking over my life! I'm sure it's just because it's still new but I spend a lot of time thinking about it. Luckily my family, friends and work are there to distract me - and hopefully I will be able to start making music with other people again soon (Covid allowing) which will make me very happy
Thanks again for replying, I hope you are keeping well,
Hi there,I was 55 and the HF is a result of mitral valve disease. I had an mechanical valve replacement in June 2020 and am taking ramipril and a number of other drugs. I was also frightened by the statistics, but like you, realise that those statistics may not represent my age group and general health.
I am feeling more confident now but my HF remains a concern.
Interesting username by the way - I am learning Dutch and have friends in Utrecht.
Thanks for your reply. I am glad your surgery was successful - although I agree about the worries regarding HF - it's hard not to think of it as a bit of a sword of Damocles hanging over your head isn't it!
Oh wow, you know my home town, Utrecht! Do let me know if you need any help with your Dutch (I don't know if there is a DM option on here, but if there is, feel free to use it!)
Hi. I am 49 as well. Sorry for your diagnosis. I have dilated cardiomyopathy and HF. I was Diagnosed last year. It’s scary at times and I hate being breathless. Take care.
Thanks Gm24 for your reply. Hopefully if your diagnosis was only last year, medication may yet improve your breathlessness...? Yes it's hard not to feel bad about being breathless isn't it - as well as it being scary, I automatically feel a bit embarrassed for being lazy and unfit - even though I know I'm not! I hope you will start feeling better this year.
Hiya, I was aged 55 at diagnosis. I found the same stats as you on survival rates and average age of diagnosis. Like you I concluded the survival stats don't apply to me as I was much younger when diagnosed. I hope we are correct 🙂
I'm getting towards 3 years since diagnosis and I'm significantly improved in terms of EF, up from low to mid 30s when diagnosed to over 50 about 9 months ago. So I have everything crossed for a better outcome. I am however retiring early, later this year so I can go off and enjoy myself while I can 🙂
Thanks so much for replying - and with such a hopeful message! That's an amazing improvement in your EF. Do you feel the difference in your daily activities?
What a good idea to take early retirement. I think having a diagnosis like HF really does make you think about how you want to live doesn't it... and maybe that's not a bad thing!
I hope you'll have lots of time to do the things you really love.
Wow that's really good to hear, thanks for letting me know. Gosh that must have been an awful shock at that age. I had my mitral valve repair aged 34 but came away feeling as good as new so didn't worry about the future at that point - I imagine that must have been different for you. I really hope you're able to live a good life despite the HF.
Oh wow Hannah, that must be a worry when you're only 20!! I really hope your echo will show something more repairable than HF - but even if it doesn't, all the messages on this forum seem to be proof that with the right medication you can live a full and happy life even if you do have HF. Please keep us posted! PS I have a daughter called Hannah, who is only a year younger than you...
yeah it’s a strange feeling, but until i have a firm diagnosis i’m trying to keep out the “what ifs” from my mind.
i didn’t expect 2021 to start off with constant appointments and no work, but it is what it is! i’ve only been 20 a few weeks but i feel like i’m at least 70.
we have had a fair amount of heart related deaths and surgeries in the family so that may be able to help hospital cardiology when i see them. it has taken 4 months and 4 urgent referrals by the gp to get an echo, but it was such a relief when i had the appointment letter.
Love reading this, I'm 48 and recently had a fully occluded LAD STEMI (delightfully nicknamed the widowmaker!). I too was very upset to both learn of being classified as being in HF and the generalised prognosis of 50% @ 5yrs. I was given an EF estimate of 35-40% three days after the event. When I got home I could barely walk down the road 5mins. I'm now walking 2/3hr long walks often with a pace of 9.5mins / km (this is after 7 wks). I've lost 23kg, the drink is gone and the diet is, well radically different. I'm shooting for 80yrs ... that feels like a good target ... let's all work together and help change the stats for people in the future.
My goodness mmmb you've had a bit of a turnaround in your life then haven't you!! Amazing how you've managed to change so much in order to stay well, that can't have been easy (although the 'widowmaker' was a good incentive to do it I suppose, haha!) Yes let's change those stats for future worriers searching Google, that's a good plan
Good on you. Lovely positive feedback. Fantastic group to be part of. Upwards and onwards x x
Hi Nederlandse, Welcome! I was diagnosed 2 years after breast cancer which would of made me 59. Heart was not enlarged before chemo & radiation. It has been six years. Each heart condition is different and how well you take care of yourself. My EF was 60-65% before chemo & radiation, 2 years after 30-35%, now 20-25%. You have to pace yourself. I am on heart medications. I agree with SpiritoftheFloyd, you can live well with HF.
Thank you very much CillyGirl (which I am sure you are not, by the way ! ) Gosh you have been through a lot already, I'm really sorry to hear that & hope that the cancer has stayed away. Thank you very much for your positive message, it's wonderful people here are so supportive. I hope you stay well.
Hi i was 58 when diagnosed with an ef of 27% had a s-icd fitted last year and all the normal medication other than feeling tired a lot of the time things have been ok
I'm glad to hear you're feeling OK despite that low EF - or maybe it's improved since? Yes, being tired a lot is a new thing to get used to for me, but I'm sure if I learn to pace myself like everyone else here tries to do, things will be fine. Thanks for replying
I was 66 when I was diagnosed with heart failure. I was diagnosed with severe LVSD with an EF of 15 to 20%.Having spoken to my Cardioligist, heart nurse and my doctor there is no reason why my heart can’t get stronger with the right medication and exercise regime. I wouldn’t even read any statistics not where I need my mind to be. If you read a lot of posts on this site they are extremely positive and help us through difficult times. There are lots of posts from people who have through following their Cardioligists and working hard themselves made full recoveries.
Speak to your cardiologist and heart nurse team as they will certainly help you have full life. They are the people in the know. Whilst they can’t predict the future they can give you the facts.
I’m back to playing golf, walk 4-5 miles a day and yes I have bad days but lots of good days.
I’m very positive for the future and looking forward to my 100th to a birthday card from the next King.
It’s hard when you are first diagnosed but keep away from Google and the ney sayers! Look at the positive stuff on this site and keep yourself positive. I can assure you having been there reading posts and stats that are negative do not help you. Try and get your head in the positive mode.
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I am looking forward to having a chance to speak to my cardiologist about it all - as it is, I got a call from another cardiologist following my echo in March to say that they'd found some damage and I should start taking heart failure medication, but nobody has sat down with me to talk through what the diagnosis means and what I should do. Unfortunately, even though my EF is at 40%, I am experiencing quite a lot of symptoms (which is why I asked to have the echo in the first place) but I'm sure the medication will start to have a positive impact soon.
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