Hubby told he has heart failure? What on earth does this mean for us?

[Flojo12]

Hi my husband developed atrial fibrillation out of the blue a couple of months ago and today went for the results of his echocardiogram. He also has cardiovesion booked for 10th sept. The GP in clinic said his heart is enlarged and his left ventricle is beating well under percentage and he has heart failure. She couldn’t tell us anything more as she’s not a specialist. So after the last few terrifying hours of trawling google and finding we might be facing a massively reduced lifespan does anyone have any idea what all this means? He’s only 42.

[Paul_heywood]

Hi

I’m now 37 and was diagnosed last year with dilated cardiomyopathy, with my LH ventricle enlarged and poor pumping - ejection factor of 33%.

I had an ICD fitted due to SVT and have had numerous shocks in the past 12 months.... but even with all this my cardiologist and Heart failure nurses remain positive I will live a good life span.... as long as your partner sticks to medication he is given and always goes to checkups and explains any new symptoms to the heart failure team, be confident they can keep it under control.

[Flojo12 in reply to Paul_heywood]

Thank you that’s positive. I can’t believe the GP just dropped it out and then said she couldn’t answer any of our questions as she’s not a specialist. I know they don’t know what’s caused it yet but still any information is much better than none.

[Routemaster]

Hi

I was diagnosed with heart failure in April - the term sounds dreadful. I have been lucky with the support from our GPs, the hospital, the cardiologist and the cardiac nurse.

The medications work really well and the cardiologist is very positive about my improvements being long-term. I do try to stick to the diet in the BHF booklet and to exercise properly - I needed to build up the walking very gradually. I have been told not to lift anything too heavy but that swimming (not butterfly) is good. I am also on restricted fluids but am learning to cope with that!

I hope that your husband improves quickly. We are so lucky with the treatment we can have today.

Ann

[Flojo12 in reply to Routemaster]

Hi thank you for that. It is so scary not knowing at this stage what they can and can’t do for him. I guess we’ll find out more when he goes for the cardioversion the 10th sept. Dr just said I looked stressed about it!! Just wanted to talk to some people who have more idea and have been through similar so thank you

[IanMK]

This may sound glib, but don't worry and don't consult Dr Google. You and your husband have had a big shock and it's understandable that you are worried but anxiety and AF don't mix. The outcomes are very good and you both need to speak with his cardiologist/electrophysiologist to understand more about your husband's condition. It's particularly important that he follows a healthy lifestyle (if he doesn't already) and find strategies to avoid stress. The symptoms you mention are similar to mine (although I'm a very active 63 yo) and I have an EF of 25%. Your husband should be on medications to reduce the load on his heart (this may make him feel tired or exhausted) and to reduce his stroke risk. There are many causes of HF and various tests will be performed to identify the cause. He may undergo a cardiac MRI and/or an angiogram.

Take a look at the AF Association on healthunlocked for more help and advice. I hope these comments and those of Paul and routemaster help

[Flojo12 in reply to IanMK]

Thank you. He’s on beta blockers and blood thinners but they’ve increased his dosage now so hopefully that will help.

[IanMK in reply to Flojo12]

If you go to the AF Association forum you may notice that many people with AF are leading a full life in their 70's and beyond, so don't worry. A common comment I have noticed is that they don't let their AF run their life.

Take care.

[Flojo12 in reply to IanMK]

Thank you. I haven’t explored it much as yet but I intend to use it in preference to google until such times we get a proper cardio appointment

[ChrisScarratt]

Hi there. First of all don't worry and definitely don't Google. I have an EF of 14% and diagnosed in March. I live a normal life it hasn't stopped me doing most things I did before. Check out a Facebook page Pumping Marvellous specifically for people with heart failure. It has up to date information on it and everybody on there has lived with what your going through now. It really is not all doom and gloom. Best wishes to you both

[Flojo12 in reply to ChrisScarratt]

Thank you I’ll have a look at the site. Cheers for the tip

[bobrob]

Dont be dispondant, it is possible to be actually cured! I had dilated heart, an ef of 34% plus AF - thought to be caused by a virus. I had 2 ablations done at the royal brompton [who know their stuf] [redo’s are pretty common] and this stopped the AF and my heart recovered with time exercise healthy lifestyle and minimal bp medication. A year later my ef is 56% which im told is pretty normal for my age, and im feeling wonderful.

[Flojo12 in reply to bobrob]

Thank you that’s a really good improvement in EF and gives me hope

[Rebecca45]

Hi my son is 18 and in Feb was told he has heart failure and Alcapa . His EF is 13%. He had open heart surgry to mend his Alcapa in march . He is feeling better and sees his consultant every month and on 16 tablets aday but says he feels better now than before . Please be positive . I always email his nurse if we are worried . X

[Flojo12 in reply to Rebecca45]

Thank you. It’ll help when we get allocated a cardio specialist and / or nurse we can talk to

[gmkilly]

Hi, I was diagnosed with HF early April after 2 HA’s in March. It’s a crap name. It Just means underperforming. My ejection fraction has improved from 16% at its worst to 46% at last MRI. Whilst I’m not leaping up steep hills quite so well, I’m walking off road as well as before. As someone has said above, I’ve had to stop weights in the gym, but swimming instead now. Do, do, do read the Pumping Marvellous guides on their website and join the Facebook group. Dump google!

HF is different for everyone, and affects each of us differently. Try and work on what he can do, and forget what he used to do, but can’t. Recalibrate. Keep moving within his limits, and take it slowly. Eat healthy.

I’m 59. I have a friend who is 78, and has lived with heart failure for 25 years. Apart from fatigue and the need to sleep during the day now and again, he’s still fit enough to pilot small boats in open water racing, but he’s a master delegator now!

It’s not all doom and gloom. New reality and new normal, yes, but once you find your level, you can improve, and still have a good life. Good luck and take care. Gary

[Flojo12 in reply to gmkilly]

Thank you. It is a lot to take in but all these positive replies are helping

[Dottyboodaisy]

I think if you read too much you can worry about things, has he got a nurse heart specialist .. mine is great for solving questions. Wait to see the specialist. They will cover

All your thoughts

[Flojo12 in reply to Dottyboodaisy]

Hi no he hasn’t got anyone allocated as yet. Just seen in clinic yesterday for the first time since he was discharged from a&e 6 weeks ago and then the woman said she wasn’t a cardio specialist so couldn’t give us any more information

[FeetheBookworm]

I too have chronic HF with EF of 17% output 2 yrs ago in September. It’s now 43%. I have a Pacemaker too. I still get tired but I go to the gym 2-3 days a week, walking my dogs every day. There is a really good ‘bible’ from the BHF that I got given by my HF nurse while still in hospital. We follow the diet (more or less) and it is good at explaining all that is going on. You can download it online from their website. I’m in my early 60’s so if I can improve there must be hope for your husband.

Take care and keep us posted. It is frightening when it first happens but hopefully things can improve for your husband.

[Flojo12 in reply to FeetheBookworm]

Thank you. Hopefully we will have quite a few options or a treatment plan discussed with us next time and I’ll let everyone know what we find out

[Gowers]

I agree with what has already been said previously - my bro was diagnosed with HF/AF nearly 10years ago and thought it was the end of life as he knew it. It is a scary title but means different things depending on all the test results. As has already been said medication can help treat most of the symptoms, my cardiologist told me that medication for heart problems actually prolong life as they reduce workload of the heart, whereas some folk can have a heart condition without knowing it. Yes, s.times the meds as in my bro case made him vv tired at 1st but within abt 2weeks he was back at work and now makes sure if hes tired after a day on the building site he has a nap when he gets home. You will find on this site you are not alone in your concerns

[Flojo12 in reply to Gowers]

Cheers it was so scary yesterday just being told he has HF and then not getting any answers to the hundreds of questions we had. All these replies help though thank you

[Dboy61]

Hi I’m 56 was diognosed with HF in April EFof10% 2cardio version later I was put on Amniodrone which has settled my AF now waiting for another cardioversion. Next week got echogram hoping my EF has improved,lm walking and swimming now,no gym but feel 100% improvement.We all have worries,try not to google to much and stay positive new medication and lifestyle will help u have a better chance of improvement remember to ask ur cardiologist about all latest developments

[Flojo12 in reply to Dboy61]

Thank you, it feels better reading all these positive replies

[ajaxer]

Hi

First of all ,stop googling as all it does is confuse and worry you with too much info.

Your hubby,s condition is quite common,and he will probably be prescriped beta blockers initially and possibly some form of blood thinner,perhaps some time in the

future a pacemaker may be advised.

Please be assured that having atrial fibrillation does not stop you leading a

normal life,and of course its a lot better diagnosed than not.

[Flojo12 in reply to ajaxer]

Hi yes he’s been on beta blockers and blood thinners for 6 weeks now and has the cardioversion in 2 weeks so hopefully that will help

[mariancolyer]

HI, I also was diagnosed with dilated cardiomyopathy and heart failure recently. I felt a little shocked but with medication I live what I would call, a normal life. I work, go to the gym and do most things I did before. I am always aware of my condition but do not allow it to rule my life. Entresto is a new drug which I am currently using and I do believe it has worked effectively so I am feeling exceptionally well at present.

[Flojo12 in reply to mariancolyer]

Thank you, hopefully the medication will help keep him stable at least while we find out what the plan is

[Flojo12]

Thank you everyone who has replied and shared their stories. It’s really helpful and has given me hope. I hadn’t told hubby I’d joined the forum but I’ll show him all the replies now and it should make him feel better too.

[gmkilly]

....and please keep asking. No question is a stupid question. We’ve all been where you are now, and this is better than google.

[Flojo12 in reply to gmkilly]

Yes I agree! Thank you 😊

[Yellabelly in reply to Flojo12]

Good luck and best wishes for you both, I ditched dr Google for the positive info help and stories on here, it’s helped us no end, and mainly try and stay positive, as hard as it is sometimes x

[Ianc2]

hi Flojo

It's a bit of a wakeup call. Now is the time to have a hard look at your lifestyle. Cut the cakes, biscuits and bread and lose the cpmplex processed food. If your partner is overweight it is time to lose weight and declare war on all the hidden sugars. I am 73 - been there, done that. It is recoverable.