Life Expectancy

[Major-Tom]

Having suffered from ill health for a good number of years I have recently been diagnosed with 45% heart muscle function. In asking questions and searching the web I have found it difficult to determine a life expectancy prognosis that is based on accredited research. If anyone can help?

[RufusScamp]

If the 45% is your ejection fraction, that is not too bad. Mine was 20% four years ago. Medication has improved it.

I don't think it is possible to predict life expectancy. It depends on how you respond to treatment, and how well you look after yourself, wrt diet and exercise. Your medics should advise you, and there is lots of useful advice on the main BFH website.

[Major-Tom in reply to RufusScamp]

Thanks for the reply RufusScamp. I will spend sometime checking out the website to hopefully learn a lot more for my peace of mind. You say that medication has improved your 20% can I ask I what way in particular has it helped?

[RufusScamp in reply to Major-Tom]

It has increased to 60%, which is well in the normal range, and the cardiologist has discharged me. I think I am on the meds fairly permanently though.

[Major-Tom in reply to RufusScamp]

Rhats really good to hear I’m pleased for you.

[Jeremyrunicles in reply to RufusScamp]

Hi rufus,

Very pleased to read your fantastic improvement.

I have the same problem as you. I'm 45 and was diagnosed with ef of 25% in February. Severe heart faliure with dillated cardio myopathy, due to chest infection which was diagnosed as asthma for months..had three weeks in hospital to stabilise me amd get rid of infection, and the rest is history, as they say.

I'm on bisoprolol, ramipril, dapa, furosemide(when needed)and spironolactone.

I have been walking , taking meds religiously and I am fit healthy, diet Is pretty healthy also.

The only thing I do, which the cardiologist days is fine, is drink approx 6 pints of cider a week. My only vice. But the social aspect of it for me is a great tonic to lifes pressures.

Do you mind if I ask what you did to improve your ef so well. Was it just meds and excersise?

Or did you do yoga, supplements, stop work etc?

I have two beautiful 3 and 7 year old girls and very much want to give my self the best possible chance to stay part of their lives for as long as I can.

I've read lots of medical journals, studies, and researched foods an so on, it would be great to know if you have any further advice to offer.

Thankyou in advance for any time you spend responding.

Jeremy.

[Anon2023]

hi. If your EF (ejection fraction) is 45% that’s the same as mine was last year and I was considered to have borderline heart failure. It’s now 53% with the help of medication which is just below the normal range. Nobody has 100% EF, normal EF is around 55-65%. I was always told that EF is just one measurement of heart efficiency and symptoms (or lack of) are equally as important. There’s a brilliant website called Pumping Marvellous which has lots of good information as well as the British Heart Foundation website. People on this forum will offer support and information but none of us can predict life expectancy as it depends on so many individual factors. Good luck.

[Major-Tom in reply to Anon2023]

Thanks for such positive information about how medication can help and I have to say yourself and others that responded to my post have really made my day. I will spend some time looking at the sites you mentioned before I see my cardiologist next week and start my own medication journey.

[Tos92]

Hi Major-Tom

I don’t personally have heart failure myself however, there are more than a few on this forum who do and go on to live almost a normal life whilst stabilised on medications. I can see you have already got a few responses which are very positive.

I hope this gives you some reassurance that it’s not all gloom and doom and that there is light at the end of the tunnel.

Best of luck with your journey and let us know how you get on.

Tos

[Major-Tom in reply to Tos92]

You are so right in that from the replies I’ve had I’ve have been very reassured that even it’s HA there is still plenty of life left to live

[Ewloe]

after my HA my EF was 40%, it improved to 46%, I’m sure it’s improved even further with my medication and gradually improving my exercise routine. I now swim twice a week with a total of just over 2 miles. Do Pilates, gym, wellness class, walking football and badminton. As well as a bit of walking. It doesn’t mean a death sentence.

[Major-Tom in reply to Ewloe]

I don’t think I’ll ever be as active a you are due to other health issues, but I certainly admire the amount of different activities you are doing and given different circumstances would love to do similar.

[Ewloe in reply to Major-Tom]

it’s been a slow creep of improvement since my HA July 2021. One thing I really miss is brufen 😂😂 for degenerative arthritis as can’t take anti inflammatory’s with heart medications. I remember reading that i have left ventricular heart failure on a GP note. Horrible seeing it in writing. But don’t let it make you feel written off. Were not. Good luck

[Fullofheart]

My EF function is between 40 and 50 (depending on whether the MRI rang or the Echo range is taken as the most accurate) and I'm just 47 years old.My gp says I'm in heart failure. My cardiologist says not yet.

I'm fit and active and hoping to be as long as possible but I'm told it will decline. I'm not on meds for it yet but will be soon.

[Major-Tom in reply to Fullofheart]

I understand from others that have replied to my post that one of the best ways to help yourself is to stay fit and active like yourself. I have other health conditions that limit my ability to keep fit but I still get to the gym once a week for now with the aim to increase this when I can and take up swimming again eventually.

[Fullofheart in reply to Major-Tom]

Fabulous. Well done to you. I think it all helps!

[Digger0]

Can't help with your question, but I can advise not to read Dr Google! The only one I MIGHT read is articles on Google Scholar scholar.google.com as you can ask for 2020 onwards articles and most of them are peer reviewed.

[Jackabee]

hi, my EF was 30 a year ago. I reluctantly took all the medication offered (never took tablets before) and at my last scan my EF had improved to 50 which they tell me is in the normal range. I was told before the scan showed improvement that I had every chance of living til I was 80…I am 70 now.

[Major-Tom in reply to Jackabee]

By the sounds of it you’ll live long past 80 too Jackabee and good luck

[Jackabee in reply to Major-Tom]

and to you. We can but hope.

[Salford62]

Hi Tom. When I got my report from Cardiologist he said life expectancy is 5 years from event happening. X

[Major-Tom]

what was your EF function at the time if you don’t mind me asking?

[Prada47]

Hello Impossible question to answer, to many variables which are in reality only specific to you.

My Heart Failure Nurse told me there is every chance something will get you long before the Heart Failure will. Oh and by the way your to old for a transplant that was after being told I am at the end of the line for current meds !!!

My EF is 38% with if I remember correctly 24% of my Myocardium not functioning and never will . I am on maximum medication that I can tolerate, BUT I am relatively stable and don't expect to be going anytime soon. I enjoy a beer and walk my neighbours dog for around 45 minutes most days covering around 2 miles.

OK somedays are a little trying but they are manageable Finally just to say I have been putting up with this for around 40 years and no matter what has been thrown at me never asked the question on Life Expectancy. You have to make sure you enjoy what you have and try not to worry about the future. I will be 76 soon and have seen a few good friends pass over the Bar.

So always remembering Old Age is a Privilege not given to Everyone so enjoy what you Have.

Best Regards

[Lezzers in reply to Prada47]

Brilliant reply, sums it up perfectly & very reassuring

[Major-Tom in reply to Prada47]

I like your thinking Prada47 and couldn’t agree more about old age being a privilege

[HenryTudor]

The only professionals who will give you an estimate (that matters) of your life expectancy are actuaries.

I had a self invested personal pension for a number of years, growing nicely. After my heart attack just over three years ago I decided to buy an annuity, knowing that you can ask for an enhanced rate if you have chronic medical conditions.

I’m no expert but know enough about finance and insurance to calculate that the pension actuary expects me to live to 82.

I’m happy to get to 80. My mother died at 62 after years of heart problems. Her father died at 64 after a HA. One of my older sisters, and my older brother, have had triple bypasses.

It can be hard work keeping to a healthy diet and exercise routine, but I feel as fit as a butcher’s dog and look forward to the next 13 years.

As with others who’ve replied the Heart Failure team at the Ulster Hospital are keeping an eye on my EF and periodically tweak my medication.

You’ll be fine.

Henry

[Major-Tom in reply to HenryTudor]

Thanks for the reassuring words Henry

[Chappychap]

If the question was, "how long on average have a thousand people in my situation got left to live?" then it could be answered with astonishing precision. But the question you're really asking is, "how long has Major-Tom got left to live?", and that's impossible to answer.

The reason is because there's such a wide spread in the outcomes. On average all the variation smoothes out. But you're not an average, you're an absolutely unique individual.

Another problem with the sort of statements you'll commonly find is they tend to be written in the format, "people with HF on average survive for X years". But that ignores the patient's age, which is usually the most important variable of all.

However, there are at least two large studies which are a bit more useful. The first is a meta-analysis (a study of many previous studies), known as the MAGGIC Risk Calculator. It's a little restricted in that it presents the results in terms of mortality rates over both one and three years. Furthermore I'm not sure if it's public access or not, (I don't have HF so this isn't a statistical area that I've explored in any depth). However, just looking at the questions gives an insight into the critical risk factors.

My sister and brother in law are both actuaries, and I believe that MAGGIC is a key constituent of the data set that insurance companies use to calculate life policy risks.

The second study is a very large Canadian study. I think it's an HF specific subset of the wider EFFECT study, which explored mortality for a broad range of heart conditions. This study is public domain,so it's fully accessible. However, the EFFECT study is quite technical and some stats knowledge would be useful. For example when HF mortality tables give an average life expectancy they also state the "standard deviation" or sd. This is a measure of how wide the spread of results is around that average. You'll typically see that the sd for HF mortality is large, in other words there's a wide spread of outcomes.

I don't have a link for the HF subset of the EFFECT study, but if I get a chance later on I'll see if I can find something.

[Major-Tom in reply to Chappychap]

Thanks for such a comprehensive and informative reply. I think the EFFECT study as you say seems the most interesting which I will try and find myself, but if you do get a chance and come across it that would be great.

[Chappychap]

Here's a link to the EFFECT Study Heart Failure Mortality Tables.

ncbi.nlm.nih.gov/pmc/articl...

A quick comment on interpreting the results (and forgive me if I'm teaching granny to suck eggs). The data is based on tracking patients who have been hospitalised and diagnosed with HF, you'll see it gives an average life span, followed by the "standard deviation". In a nutshell here's what this means.

In Table 2 for example you can see that 406 patients (who were judged as Low Risk on the EFFECT HF risk scale), and were aged between 61 and 70 years old, were discharged from hospital. On average they lived for another 8.05 years. The standard deviation was 1.93 years. To keep it simple that means roughly 68% of them would have lived for one standard deviation either side of the average, or from 6.12 years to 9.98 years. Roughly 95% of them would have lived for two standard deviations either side of the average, or from 4.22 years to 11.91 years. And roughly 99.7% of them would have lived for three standard deviations either side of the average, or from 2.29 years to 13.84 years.

If you want to work out the spread from the standard deviations the rough rule of thumb is 68% for one standard deviation, 95% for two standard deviations, and 99.7% for three standard deviations.

One final point that I'd make. There's another study I've seen that looked at the effectiveness of medication on extending life expectancy with various heart conditions. Unfortunately I can't find the study just at the moment (and I'm currently away enjoying some much needed sunshine so it'll be a while before I'm back at my computer and can search properly!). However, I do remember that of all the common heart conditions HF was amongst the most responsive to medication.

Rigorously following best practise medication protocols extended average life expectancy amongst HF patients by something astonishing like four or five years, and also granted commensurate advantages in terms of quality of life. So you can see why mortality tables, no matter how scrupulously compiled, are only one part of a complex equation. Factors like this, alongside the broad spread implied in the standard deviation figures, are why I said in my previous post that calculating any one individual's life expectancy is little more than a shot in the dark.

Hope this helps.

Live well, enjoy each day, and I wish you every good fortune.

[Major-Tom in reply to Chappychap]

I will look at the study with interest that is measured in the manner you suggest as well as bearing in mind the often significant effect medication can have in those with HF. I wish you a very relaxed remainder of your holiday filled with days of joy and endless sunshine.

[Prada47 in reply to Chappychap]

Hello I enjoyed that read,

I have seen something similar when looking at how NICE come to conclusion on the guidance for prescribing who should have a pacemaker, or very expensive meds etc. Thanks again for presenting your knowledge. Enjoy the Sunshine Sun has just come out here after a very heavy downpour !!

Regards

[Hidden]

Hello Major-Tom

Please see link below by the BHF.

bhf.org.uk/informationsuppo...

I attended the local Heart Failure clinic last week as my EF has dipped to 30%. Having been in this situation previously I'm not overly concerned as a change in meds and some work from my end will hopefully get my heart working a bit better.

The nurse referenced this document, which they are using to determine HF stages. Interestingly, symptoms are taken more into account, so, I'm at Stages 2-3. This is a bit different to what I've seen 18months ago and seems more reflective of how you feel, rather than basing HF fully around EF.

Heed

[Major-Tom in reply to Hidden]

thanks for the link and having looked at the stages of HF I veer from 2 to 3 at the moment without medication which I am starting next week. I am hoping my symptoms will improve once the medications had reached their optimum levels.

[BicuspidBloke]

I read a lot on Life Expectancy when I was diagnosed with Heart Failure (bicuspid valve, calcification, enlarged heart, low EF of 30%) last year. My advice is "don't".I was told by my cardiologist that he would normally expect someone in my position to have two years to live (if untreated) from when problems first started BUT the complicating factor was I had minimal symptoms and Covid-delays to appointments meant he could not determine how far in to those two years I was.

He said life expectancy if treated (new valve) would be only slightly reduced but difficult to answer (recovery, rehab, medication, lifestyle, diet, type of tissue etc). I found some US and Swedish studies that seemed to suggest quite poor survival rates post-operation. Just a few years really. It was very negative. But I had to remember their situations are very different to ours. For eg, the US may have great private healthcare but did the results include those who don't have insurance or delayed going to a doctor due to cost? Or those Americans who are hugely obese?

I had the op last August. The valve is great and rehab a breeze but still some concern over the other matters - I'm awaiting a follow-up Echogram. But in the days after the op the cardiologist came in and said I was very lucky - I had only two flaps on the old valve: one they knew was faulty and the other was just blowing around like a bed sheet on a windy day. He said I was "days away from a catastrophic event".

Being informed is good but using research without context is not helpful. Chat with your cardiologist, other medical professionals and survivors. They're the only research you need. Then YOU get to decide on your life expectancy. Short, medium or quite long?