heart failure

[chrisboxall]

I'm a 62 year old single male with two teenage boys . Was diagnosed 12 weeks ago ìt just came out of the after having same cheat infections. Trying to dill with it at first was hard 😫 now getting my head around it the thought of not seeing my boys was my biggest upset but they are great and understanding. so now is just see were I go with my etc.

[Tos92]

Hi  chrisboxall

I’m sorry to hear about your recent diagnosis of heart failure.

It does sound extremely scary when you hear it for the first time, but you’ll be surprised, it can be managed well. A lot of people are able improve their ejection fraction through medicated treatment and some positive lifestyle changes. You don’t say what your ejection fraction was?

We have more than a few members who either have had, or has heart failure.  Hidden is one of our members, and so is  Lezzers who have experience with heart failure.

I just wanted to give you the above reassurance and also add that you will have more time to spend with your boys. I know it’s concerning, but I hope when you hear of other people’s experiences, this gives you some confidence and hope.

All the best.

Tos

[chrisboxall in reply to Tos92]

my heart is in larged and and at less then 50% out put plus the AF and values leaking.

[Tos92 in reply to chrisboxall]

There are a few members on here who have an ejection fraction below 50. So please be reassured you’re not the only one.

You may also benefit from joining the Atrial Fibrillation Association Community on here as you mention you have AF.

[Fullofheart in reply to chrisboxall]

Hi there. Ejection faction is never 100%. Mine is about 40 to 50. Dependent on whether they go by mri or echo. I'm 47, working full time, exercise daily. I'm not on any meds for it yet but will be trialing that soon. Ive had AF for 18 years which is why my heart is enlarged and why ef is low. Unfortunately treatment for AF hasn't worked for me.Gp says its heart failure already. Consultant says its borderline. Point being at 50 % that's only just below normal. I think 55 and above is classed as normal. As others have said you might even, with treatment and lifestyle, get that figure back up into the normal range. I know its scary. But there are lots of options as to how they might treat it. And I assume there is a plan for the leaky valve? Talk to your consultant and- or gp and if that's not forthcoming the bhf helpline is very good.

[jeanjeannie50]

Hi Chris and welcome to the forum.

Heart failure is a very misleading name, it does not mean that your heart is going to stop beating and you die. It means that your heart is not pumping quite as it should. There's a chance it could still be beating that unusual way when you reach 90. Some people have even had their heart failure return to normal with medication.

Jean

[chrisboxall in reply to jeanjeannie50]

thank you for the advice.

[Soapylil in reply to jeanjeannie50]

I’m so glad you put that , because it must frighten so many people , especially those going through heart issues to hear those two words . A lot of people in my family had it and still have it but I’ve got an uncle still here at 94 .

[jeanjeannie50]

Do you know what the medical plan for you is and have you been prescribed pills to help?

[chrisboxall in reply to jeanjeannie50]

I'm on 7 tablets and doing home checks blood pressure etc and putting it in a app which the heat nurse looks at .

[jeanjeannie50]

More people may respond if you say what the name of the tablets you're taking are.

[chrisboxall]

ok will put them up later thank you.

[Milkfairy Heart Star]

Hello,

I don't personally live with heart function problems, but my father did.

My mother in law has both atrial fibrillation and heart failure.

As Jean has said, ' Heart Failure ' isn't a particularly useful term. It causes alot of upset to some patients.

In other languages the term heart failure isn't used.

There are a couple of wonderfully supportive and informative patient groups who hopefully will be able to help you further.

Pumping Marvellous

pumpingmarvellous.org/

Cardiomyopathy UK

cardiomyopathy.org/

There are several forum members who live with HF and hopefully they will along to share with you their lived experience of the condition.

[Hidden]

Dear chrisboxall

What a shock it must have been for you to have this diagnosis of heart failure and as you have gathered by other answers, that this term is not popular among us and to be honest with you, nor with a growing number of health professionals.

What you have to remember is that if this had not been picked up during your chest infection treatment it could have got worse to a point that does not bare thinking about, as it has with many of us on here.

So they have found out something is wrong and they have placed you on medication, your body is no different than it was just before you found out, its your mind that has changed and that is one of the most important fights you will have on your recovery.

Its a wake up call of the most dramatic kind and many on here can understand exactly what you are feeling especially regarding our loved ones.

You are not alone and we are here to help the best we can.

Take care and please keep us informed.

[Hidden]

Hi, As you can probably gather by now Heart Failure can be treat with medication and some work from yourself.

Over many years, I've learnt you have to understand the problem with Heart related matters first and then you can deal with them, without worrying t oo much.

I'm presuming your Nurse has discussed the correlation between Ejection Fraction and How You Feel. If not have a look at link below by the BHF.

bhf.org.uk/informationsuppo...

From this you may have been diagnosed with a particular stage of HF.

According to my last Echo, my EF was 30%, and my nurse has diagnosed Stages 2-3 for me. Twelve months ago the EF was 45% and more towards Stage 3, that said I feel better than I did but the EF is lower now. As such I'm fairly relax3d about it.

Best Wishes

[RufusScamp]

I was diagnosed with heart failure about 4 years ago, like you, following a chest infection. My E/F was 20%. With meds, exercise and a pacemaker, it has improved to 60%, (in the normal range) and I was discharged by my cardiologist.

As others have said, heart failure just means your heart is not as efficient as it should be, not that is about to give up. Obviously, all cases are different, but if your E?F is as good as 50%, that does not sound too bad.

[chrisboxall in reply to RufusScamp]

thank you for the support it helps me look at it all definitely.

[Anon2023]

hi. Welcome to the forum. I’m 52 and I was diagnosed with heart failure last year after contracting endocarditis. It was an awful shock and I can completely empathise with what you are going through. My EF was 45% but after taking medication for around 9 months it has increased to 53% which is near enough normal. I didn’t realise until RufusScamp explained it to me that nobody has 100% EF. Normal is around 50-70% so yours is close to normal. EF is just one way of measuring heart function so try not to get hung up on the numbers There is a good website called Pumping Marvellous which gives accurate and clear information that you might want to look at. There are many people on this forum who have lived long and full lives with heart failure, it is not the death sentence that you may fear it to be. You are not alone.

[chrisboxall in reply to Anon2023]

thank you that is very helpful regards

[uzininemm]

Welcome Chris,

I am just coming up to my second anniversary so know exactly how you felt in being told the news, just to add a few things from what everyone else has said based on my experiences.

Sorry if there are things you already know already.

First the bad news, there is no cure as yet so you will have it for life and it will make a difference to what you possibly did before.

Now the really good news, with the meds you are on, possible lifestyle changes (fluid limit of 1.5 ltr a day, not exceeding 14 units of alcohol per week and not having excessive salt intake) and exercise you can still have a decent rewarding future.

One thing not mentioned by yourself is have you been offered heart rehab, if not ask for it, if you have been offered it take it, you won't regret it.

I would also add it does take time for the drugs to be fully effective and I would say in regards to exercise build yourself up slowly with what you are comfortable with (it's not a race!)

Watch the weather as well, you may find you will struggle and need to take care more in hot and cold weather.

I know how hard it was when first told (I thought I had days left) so I am really pleased for you that you have got your head around it, by doing what the medics tell you should ensure you have many years with your boys to come.

Best wishes.

[fairgo45]

Hi

I was also recently diognosed with heart failure with preserved EF 50% but diastolic left heart disfunction it doesn't move the blood from right side to left side fast enough and too slow emptying again

I've been put on a drug called Jardiance there is another becoming available in the UK called Dapaglifozin that's for both types of heart failure.

It's given to people with type2 diabetes but it's been found to help a lot with heart failure.

I know if you google HF it looks like it shortens your life span but these wonder drugs have proved to be a game changer have a word with your cardiologist about it

There's a website that is for HF pumpingmarvellous.org it's really helpful have a look it has a big post on this new drug it will lift your spirits

[Stampedeg]

Hi Chris

Don’t let the name heart failure get in your head. You can have a completely normal life if you do the right things. I have hf my EF was 10% now 1.5 years later I’m at 48% and do everything I used to do and I was fit. So don’t let it affect you or your boys. Just eat health and do everything you can to stay healthy

[GracieOS]

hi

It’s a terrible shock, that diagnosis. The words heart and failure in one sentence. But it’s also terribly misleading. It does not mean your heart is about to ‘fail’. It just means your heart isn’t working as effectively as it could. Heart failure is measured by Ejection Fraction (EF) and symptoms you are experiencing. EF normal range is between 50 and 70, it is not 100%. Drugs and lifestyle changes can make a huge impact and dramatically improve EF and symptoms. Especially if yours has been caused by an infection.

I was diagnosed with heart failure five years ago, aged 55. It came out of the blue and was a complete shock. I have rheumatoid arthritis and apparently that but me at much higher risk of experiencing heart failure. My heart was enlarged and my EF was in the low to mid 30s. I thought I was going to die. 5 years on and my EF is in the low 50s. So back in the normal range albeit at the bottom of that range. My heart is almost normal size too. I’ve been discharged from cardiac services and I live well. I go hiking, do my gardening, cycle and travel around Europe in my campervan. I’ve learned to live with heart failure, I do have to pace myself, I can’t walk up a hillside at the same pace as my husband but I can do it, I have to have rest days and I can’t hike as far as I used to (but could just be being 5 years older). I worry far less these days about it. I still have the occasional wobble but I’m not ‘sh** scared’ anymore. I decided to retire early about 18 months ago and it’s the best decision I’ve made, now I can really enjoy life.

[MoyB]

Just wondering if they are planning to do anything about your leaky valves?Everyone is different but in my husband's case they replaced his aortic valve and also fitted a pacemaker. He was 79. He was in and out of hospital in less than 24 hours and hasn't looked back. The valve was inserted through a very small (1cm) cut in the groin which healed very quickly. He's now looking forward to his 81st birthday in August and, although he still has a diagnosis of heart failure, he's going strong! He takes ramipril and bisoprolol plus other meds for his enlarged prostate, but that's all.

Don't be afraid of this diagnosis. It sounds like the end but it's really the beginning of a new life! You will get whatever treatment you need and will probably feel much better for it!

Xx Moy

[francesw47]

Hello and welcome. I had the diagnosis of heart failure in 2019 after valve replacement surgery went wrong. To be honest, the diagnosis of heart failure did not come as a shock as I felt so awful. Like others here i hate the term and prefer to think of it a consequence of the damage to my heart. My mitral valve leaks a bit, left atrium is a bit dilated (the force of the blood going back into my left atrium) and frankly for two years I felt pretty rubbish. Following the recent public health emergency my cardiologist sorted out my medication and I do now feel much better (it took that two years to fully recover from surgery). I watch my diet, try and walk briskly as much as I can, try and avoid stress and generally try and keep myself as healthy as possible. I'm in my early 70s and looking forward to a good decade! The Pumping Marvellous website is really helpful - they have a private Facebook group for support if you are social media minded. As others have indicated - it really can be managed but its a case of optimising the meds and sorting out lifestyle. The downside is that I never wanted to be that old lady who carried her meds home in a carrier bag....but look at me now!!

Do keep in touch with us and let us know how you get on.

[Rosie0202 in reply to francesw47]

Hi. I was interested in what you had to say about heart failure. I haven't been told I have it but I also have some mitral valve leaks and the left atruium is dilated. I was interested in what you said about the cardiologist sorting out your medication. I have spikes in BP and raised blood pressure but my GP said he was not happy to change my meds. What meds were you prescribed. Many thanks.

[francesw47 in reply to Rosie0202]

Hello Rosie. My care is undertaken by a cardiologist because of the significant problems I have with my heart following surgery in 2019. Its not quite stable yet, but getting there. All the drugs I take are for heart failure/angina - I've never had high blood pressure. But if you are getting spikes in BP then you really should talk to your GP about that - with perhaps a diary to show how high the spikes go? Sometimes it is hard to get people to listen to you - which is why 'proof' can be of helpful.

[Shuaholic]

I was diagnosed with heart failure 2 and a half years ago, I was also terrified when I heard those words, my EF was 37, I was a fit, healthy active person, it was all caused by stress. I have been on Ramipril and Bisoprolol since then and after a period of adjustment I am once again running (1/2 marathons) and still doing everything that I was doing before my problems started, albeit a lot slower. My cardiac nurses were great and told me to listen to my body, if I start to get breathless I just stop and take a rest then carry on. The term heart failure was not a death sentence for me but just a warning to reassess my life and make some changes. Good luck. Xx

[chrisboxall in reply to Shuaholic]

thank you

[IanMK]

Hi Chris,

Yes - the diagnosis comes as a big shock, doesn’t it. Five years ago I was 63 when I was diagnosed and my EF went down to 25%. I had a cardiac ablation and now have a pacemaker. I also take a handful of tablets with my breakfast. My EF is now close to 50% and life is back to normal. Take a careful look at your lifestyle and see if there are any changes you need to make. Stop worrying and enjoy the time you have. Anxiety only works against you.

Best wishes.

[Jackabee]

Take your meds and try not to panic. My EF was 30 a year ago and is now 50. I am able to do all of the things that I did before

( except tap dancing and I was no good at that anyway!)

[Prothy]

Hi Chrisboxall, heart failure is a shock to the system and very scary when first mentioned to you. When I was diagnosed with HF/AF my EF was 15%!! After cardiac rehabilitation (exercise classes which I HIGHLY recommend) and meds, which took around six months to sort out. When I was signed off back to my doctors surgery my EF was 55% (classed as normal). So Don’t worry too much, easier said than done I know 🙂.

[Wilkie105]

HiLike you I am 62 and recently found out that I have a heart problem again it was completely out of the blue, I can testify to it being one of the most scary moments of my life but I'm adapting to the news , you will too, & you find loads of support and info here , which has certainly helped me .

[chrisboxall in reply to Wilkie105]

thank you for the support.

[Sunnydalelass]

Hi Chrisboxall

Glad to hear that your sons are being understanding. I too have a teenager . My husband has had cardiac dilated myopathy. He had a heart infection as a child however developed AF in his 40s. Medication and exercise helped and he is now stable (mid 50’s) I had a heart attack at the beginning of the year whilst in Austria. This damaged part of my left side of the heart. My Ejection fraction is also reduced. I have recently started cardiac rehabilitation and am feeling better for the exercise. The Austrians recommended that I should have’s further stents inserted as a matter of urgency I went to Leeds Hospital . However they didn’t recommend the stent procedure after a MRI scan. Our daughter was challenging for a few months part of which was due to the disruption She has settled down now. All the best . Sunnydalelass

[Bigmark61]

Hi Chris

I got my diagnosis 5 years ago and thought my world was over, I had just got my first grandson and thought I’d never see him grow up but I now have my second one and I’m still playing with them now I’m not an athlete but I’m loving it and hopefully creating memories with them. I’m 62 as well I’ve slowed down and it was hard to get my head round it. I had to give up work 2 years before the HF diagnosis with Spinal stenosis I was plagued with back problems most of my working life and thought that was the thing that was harm me the most until HR but I’ve learned to live with it and even more meds. You do have ups and downs but try your best to stay positive. The meds nowadays are much better than they used to be and you could be here for years to come. I’m hoping too. 👍

[chrisboxall in reply to Bigmark61]

hi big mark my work is hanging in the wind at the moment can't do my roll but still going in which is OK.But it all adds to the were is it all going but on here hearing same good heart warming storys which is great.

[Bigmark61 in reply to chrisboxall]

Chris I’m not sure if I can recommend a site to check out but along with this site I’ve found great help with HF pumpingmarvellous.org/

[Deejay62]

Hi chrisboxall welcome. My EF is 23% stage3, but 5 years ago after having an echocardiogram it was 15%. I have a pacemaker defibrillator fitted and I take 6 different tablets plus warfarin as I also have Afib. At 15%

I couldn’t do much, but I still continued Aqua aerobics and swimming, with advice from my cardiologist. I was told by my cardiologist that I need to exercise and keep active. I have a lot of other conditions and one in particular as caused my heart not to pump properly. I also have electrical problems with my heart.

I was diagnosed in 2003 with a 43% EF the word heart failure made me think I was at the end of life. A lot of us on here are the same, with a very low EF. Just eat healthy exercise and you will be ok. All the best.

[Andrew1966]

Hi Chris

there is a charity just for heart failure 'Pumping Marvellous' they also have a Facebook page to talk with other people with HF. hope this helps some.

Best wishes

Andrew

[Dogloverxthree]

sorry to read that Chris I’ve just come home from AE taken in again with AF yesterday evening. Because I left it so long before calling they were concerned it might have done some damage so kept me in till now, they told me to report to pacer clinic Monday to run a test on my pace maker as it has travelled quite a bit and to contact GP TO INCREASE my bisoprol 😱good luck to you but you sound very positive

[rizal]

Hi, chrisboxall. I am a person with heart failure. First off, yes it is a very frightening term when you are first diagnosed. Gradually you learn more about it and how to live with it. One of the first things to learn is that there are two main types. HFrEF and HFpEF. the reffers (those with the first type) have a bit of an issue with pumping out blood from the heart. They have a reduced EF - the proportion of blood in the ventricle which is pumped out at each beat. "Normal" is about 50% or a little bit more. The othe main type HFpEF, the peffers have an issue with filling the heart. They make up around half of the HF people. Peffers pump out the right fraction but it is a frction of a much lower volume. The end results in terms of symptoms etc are about the same. So EF is really little more, in realistic terms, than a figure to guide the cardiologists in which treatment strategies to follow. There are many different meds available to treat HFrEF. I have a facebook friends with HFrEF who runs marathons! HFpEF is the cinderella sister of the pair. Until this last week, there were no medical treatments available to treat this condition directly. NICE just this last Thursday announced approval, well a recommendation actually of a drug which has been shown to help this condition. We live in exciting times.

I strongly recommend that you look at the wealth of info on HF at pumpingmarvellous.org

[gibb01]

I have heart failure too and was diagnosed with it in October last year. It was a massive shock to me too. My ejection fraction was measured around 45, so not too bad. Physically and mentally I have good days and bad, but mostly pretty good! I’ve realised this isn’t a death sentence and try to really enjoy life and do the things that I want to do. I agree with other comments, British Heart Foundation are fantastic for information and so is Pumping Marvellous. I’ve made positive lifestyle changes and take the meds, so I’m hopeful for a long and bright future. Hope this helps, take care. X

[Furryears]

Hi Chris , I am a 61 year old lady who also had her world turned upside down, I had a HA (couldn’t fit stents) so had an emergency bypass I was in a terrible place for months and months as if that wasn’t enough my EF was 45% and they placed me in heart failure, I know there was a fair bit of damage to my heart at the time of the HA, I was not in a good place couldn’t process this properly.

I have changed my lifestyle diet and exercise although I have alway eaten quite healthy and always done some form of exercise what I have done is made some more tweaks I havnt got the best appetite and haven’t had since the HA but make sure I eat breakfast lunch and dinner (even make my own soup 😉) to get the goodness from the veg.

The good news is my last EF results had gone to to 59% and my consultant was over the moon to tell me he was taking me out of HF and to make sure I keep doing what I’m doing.

He told me to go straight back to my doctor if I feel things are changing and he will be able to contact him, he finished his letter saying he would be happy to see me if things change.

Yes I still get out of breath at times and yes I still get really tired I am still on all my meds but this is the new me and I am truly grateful to have this second chance, I thank daily every one from the ambulance staff to the hospital team who helped me.

I had lots of lows couldn’t see the light at the end of the tunnel, seen a psychologist for about 9 months and my goodness how that helped must have cried every session gir 6 months .

Most importantly listen to your body and tell the doctor If things don’t feel right,

[Gden67]

Hi chris, I was diagnosed two years ago with HF, my EF was confirmed at 32% early last year and I was booked in for heart bypass in April. I decided against having the surgery in the Spring amd agreed to have it done later in the year. I took the meds and carried on with my very active lifestyle. In fact I spent most of the Summer camping and by the end of the year I had cycled over 1800 miles, most of it off road.I finally had the surgery at the end of January this year. I'm back out on my bike now, nothing really seems to have changed. Seems to me that the meds were doing their job without the need for surgery.

All in all, having HF seems to have had little efect on my life, or lifestyle. I will be 72 this year.

[valgal76]

Hi Chris. I was 37 when i had my first heart failure, then it happened again about 6 months later. All i had was shortness of breath. I just put it down to my athsma playing up, but when i went into hospital they said to me 'No, its heart failure'. And then to have it again 6 months later, was devastating. I am now on blood pressure tablets and cholesterol tablets, also diearetic's tablet, to flush out the fluid off my heart and lungs. You think life is just going peachily along, when all of a sudden, you have a near death experience and it screws things up, or makes you reavaluate your life more i guess. Your not alone here.

Best wishes,

From

Val

[chrisboxall in reply to valgal76]

thank you Val

[C66t]

Chris sounds like you've had a tough 12 wk. Fair dues to you for reaching out.lots ofgreat support here plus info. All the very best to you and your boys. Keep us updated please we can learn so much from eachother.🥰