Can't stop thinking?

[Gchar86]

Still fairly new. Partner not long been diagnosed with hf and everytime I'm just sitting thinking I get upset at the thought of his life being cut short a little? Thinking I'm not guna get old with him? Does anyone even know how much its cut short? An idea at least so I can try to come to terms with it? He's currently doing good n changing/adding more meds here n there but I'm thinking the worst always plz help 😔

[Hidden]

Dear Gchar86

Who could not be moved by your post and it is so hard to answer.

I know that your looking for support but it is very difficult to say anything that could help you or your dear partner.

But there is help for you as well as him out here and more and more partners of the ill are being recognised as needing support as much as the ill one.

Your first port of call is your Drs and you must be as honest with Her/him as you have been with us.

Your thoughts are natural, regardless of your ages and sometime a shock like this makes us realise just how much we love and want to continue loving, even if it hurts.

Now is the time, the past has gone and no-one can tell you about what time you both have left in the future.

Maybe you need this time to think and basically grieve at the moment, that will help you find the strength to get that help which in turn will help the pair of you equally face up to your futures.

Use this time well and don't waste a moment, it is passing as you read this reply.

As with other answers to your other post, as much as it feels like it, you are not alone.

Take care you are both in my thoughts

[Gchar86 in reply to Hidden]

I just feel useless. We have 4 children 15, 10 7 and 3 and think they may lose him just as I will it's rely not fair and I'm struggling I'm not guna lie. Doctors show confidence etc but I'm I being too positive thinking he's guna live a normal life??

[Hidden in reply to Gchar86]

Dear you,

Whatever life he has ahead of him will be in the loving embrace of both you and the children.

Things will change, they have already begun to, you all will change with it, slowly things will balance out as you all move on.

I do not know what you class as normal but your lives will be different than before and in some parts better for they have found the problem now and not later on when it could have been a lot worse.

There is plenty of help in all aspects of his condition including financial if he qualifies and it is needed.

Try not to overthink things until you know all the facts and the treatment needed, especially for the sake of both yourself and you children.

Take care

[Hidden]

Hello

I am sorry you are getting yourself so upset and it is taking over your every thought

I do know how that feels as I suffer with anxiety but the one with heart issues and it is not a good combination

But when they say heart failure which I come under that title to as I had 3 heart attacks and a triple Bypass I have been told by the professionals it is just a term anyone with anything wrong with their heart mild or more severe they have to use even though they do not agree with us all been put under that title

My Dad started with heart attacks at 42 a few years older than your Husband he ended up having quadruple Bypass and that was years ago he lived to be 77 and it was not his heart that took him either and had he not got cancer I am sure he would still be here today

He looked after himself and his heart went on just like everyone else's without a heart condition so no it is not a life sentence been diagnosed with a heart condition with the professionals watching him and medications a healthy lifestyle he might out live you !

There is no reason why you will not grown old together

If you are struggling though so much then speak with your Doctor some Counselling may really help you x

[Gchar86 in reply to Hidden]

That's rely assuring thanks so much. I take anxiety pills but I must b off the scales for them not to work at all. I feel worse than ever at the mo 😕 x

[Hidden in reply to Gchar86]

Hello

Maybe you could speak to your Doctor they might up the strength of your med or even change it if it is just while you are adapting to this news and making sense of it and they could refer you for Counselling while you are discussing your meds

This will get easier and in a way we are lucky when we have heart conditions that it gets picked up so we can be monitored and have the right treatment as some do not get that chance

Try and do a list of positives to all this I know you will struggle to see then but while you are trying to concentrate on finding positives it might help to keep those negatives out the way x

[RufusScamp]

"Heart failure" is such a bad term. It means his heart is less efficient than it ought to be, not that it is packing up.

Obviously, I don't know all the details of his case, and can't give you medical advice, but I can tell you my experience. I was diagnosed with HF 3 years ago, aged 68, with an ejection fraction (EF) of 20% instead of 50 - 60%. This did not stop me having a winter walking holiday in the Alps. Since then, I have done a cardio rehab course, and been on an assortment of pills and potions, and 2 years ago I had a pacemaker fitted. When I last had a scan, my EF was up to 60%, and the cardiologist discharged me.

It is important that your partner has a good diet, and regular exercise. See if he can get on a rehab course.

There is loads of good info on the main BHF website, and pumping marvellous. He could also have a chat with the BHF nurses who could give you more specific information.

Whatever you do, don't use Dr Google! I wish you all well, and hope you still have many years together.

[Gchar86 in reply to RufusScamp]

Thank you so much. Yeh his heart ef is 10-15% and on the 2 weeks he's been diagnosed he's lost 3.5 stone! All the fluid coming off nicely n he's now starting to lose fat weight now. Fingers crossed it continues 🙏

[RufusScamp in reply to Gchar86]

Fingers and toes crossed for you! The latest drugs are almost miraculous, so I hope they help him.

[HumanZoomieMachine in reply to RufusScamp]

I'd it's any consolation he seems in a base and situation that I was 3 years ago when I was hospitalised with my EF around that sort of level I'm now 65 + but the recovery is so random depending on how he responds... I ended up shearing around 2.5 stones of liquid while in hospital...

The mortality of LV DCM is soo skewered by end of life diagnoses...but he has relative youth on his side I'd he's the same age... I'm now over 3 years removed now from hospital and all sighs are good... Is he getting an andiogram/CMR MRI when he's able/ stable?

[RufusScamp in reply to HumanZoomieMachine]

I remember the liquid thing. I thought I was going to end up as a dessicated husk on my first day in the assessment unit.

[Issy14]

It is not uncommon to feel this way when you first get the news of HF. Try hard to be as positive as you can for the sake of your family and your partner, they all rely on you to lead them. Try getting into the habit of saying "thank you" to yourself for every small improvement, you would be amazed how this can help. It is good advice to find out all you can about the condition so that you will feel more confident about the future. Keep yourself busy each day so you are not dwelling on negative feelings. It sounds like there is already some good news if your partner has been losing lots of fluid. My good wishes to you all and do let us know when you are feeling better about things.

[Larneybuds]

Good morning......really feel for you and it's the same shock for everyone when heart failure is mentioned. Please don't go into meltdown......it needs to be called something else as it makes it feel like the heart has just 'failed' and wnt last long. Not the case at all. It just means that as a pump the heart isn't working at its best at pumping blood etc around the body and may need some assistance . I am just trying out some new drugs for me.....entresto, plus a couple of others that are meant to be wonder drugs for a heart that's not upto scratch so to speak. My mother in law was diagnosed with heart failure and an extremely oversized heart when she was 50......she is now 93 and still here!!. So much is being done now in heart technology so don't feel like this is the end!!. There are all sorts of support drugs and things that can be done. Have a look at Pumping Marvellous....fantastic with lots of info....clinical trials etc. Find out as much as you can and become more knowledgeable.....this may make you deal with it in a different way where it doesn't feel so terrible. Xxxcc

[rizal]

Others have mentioned Pumping Marvellous, I also would recommend them. Lots of information in easy to understand form. It will set your mind at rest pumpingmarvellous.org/heart...

[Cruiser25]

Hi, as RufusScamp said heart failure is most definitely an unhelpful term for us who are new to these situations. Just because a heart may be struggling a little, it does not mean it can't get better and improve, just like any other muscle, we can exercise and develop it and help it!

The medications which are readily available are pretty amazing, some slow the heart so it can fill more before it pumps, thus making each beat more efficient, some lower the blood pressure so there's less demand upon the heart in the first place! But a change in lifestyle is needed, better diet, exercise, losing weight if required, and cutting out (mostly) unhealthy treats and smoking is a biggie!

To give you an idea, after a significant HA, back in Feb, 7 stents and a reduced ejection fraction down to 38%, (I understand 35% and under is classed as heart failure... urg hate that name), I now go to 'Parkrun' each Sat morning and heart rehab class every Mon afternoon. I'm only on what is the 'bottom rung' of go-to heart meds, and I can already do this, there are many more meds available, so wow, plenty of help is out there.

Good luck with your journeys, as my Registrar told me on my discharge from hospital, this, right now is the lowest place, you will only improve from here....it's up to you.....

[RufusScamp in reply to Cruiser25]

My EF was 20%, so things can improve. I don't think I could ever have done parkrun though...

All the best to you and yours.

[Heartfairy]

Hello Gchar86 first of all I am so sorry you’re going through all of this with your partner but want to thank you for the post as you have received so many positive stories in response which are always good to read on the forum. Heart Failure does make it sound like “the end” but it’s not and it’s just words. Your partner’s heart is not working as it is but my cardiologist told me (not that we want anything to go wrong with our bodies) but if you’re going to get something wrong let it be the heart as research has come a long way, medication can control and improve it and we can also make changes to feel fitter and better than before. It is a shock, it’s sad but it’s a wake up call to life - it sounds like your partner is doing good losing the weight/fluid so that’s a start. You’ll both have good days and bad days but you’re in it together ❤️❤️. Focus on the good things you are able to do and enjoy time together along with your children and whilst the heart research continues, enjoy a new lifestyle all together and eventually you will come to terms with a new chapter. Good luck - and talk to each other that’s important too! ❤️🧚🏼‍♀️

[Insert]

Hi so many of us reading your post will know exactly how you feel. Firstly don’t be hard on yourself give yourself time to absorb such news. Heart failure is an awful term giving the impression of imminent catastrophe! Break it down it’s not, the heart is not working entirely normal, with medication and lifestyle changes if necessary it can. My advice would be to get as much information as you can only from reputable clinical sites I’d recommend British Heart Foundation, make use of all their resources such as speaking to nurses or seeking counselling. Try to stay positive live and enjoy each day, try to stop worrying about the future that no one can predict. My husbands diagnosis of Dilated cardiomyopathy a year ago changed me a lot I turned the whole situation on its head, things I might of got cross or stressed about, I don’t now it’s not worth it. Our situations are awful but we’ve been given the chance to reevaluate our lives and appreciate everything we have and everything we can do. X

[BicuspidBloke]

I had a similar issue when hearing the words "Heart Failure". I thought I was weeks from death. But eventually the health care professionals got through to me that it just means "the heart is failing to function properly" and they were going to fix it. Now I feel something like "Heart Inefficiency" might be a less panicky term. Your partner is getting treated - that's amazing. Let the wonderful NHS do what it does best.

[Cee-Cee1 in reply to BicuspidBloke]

"Heart inefficiency" would be a much better term Biscupid - wish our amazing medical profession would start using it! I sometimes think they don't realise just how much us mere mortals are affected by medical terminology that sounds so dire when it really isn't these days.

[Weeps24]

I understand how you feel. My partner was diagnosed with heart failure around this time last year. I was out of my mind with the stress and worry. I really felt like I couldn't cope. I visited my gp and got dome anti anxiety meds and was referred for counselling which I am still waiting for 🤣. After waiting for months to see a cardiologist we finally saw one and got referred to a heart failure nurse. He had an angiogram which showed no blockages, then mri which after waiting seven weeks for the result showed heart was nearly back to normal and we were discharged by everyone. I still worry as no definite diagnosis was given only "suggestive of cardiomyopathy" which was "likely caused by a chest infection". Just wanted to let you know things can improve. But like you at the beginning I was out of my mind with worry ❤️

[Gchar86 in reply to Weeps24]

I hope we have the same results in time ty 😊

[Weeps24]

Me too 🙏. Like others have said pumping Marvellous is great. I joined them on fb and found a great community with great advice ❤️

[fairyfeathers]

hello to you. So sorry you are suffering with terrible anxiety issues. Sending you a big hug as you must be overwhelmed with what’s going on. My father was diagnosed with “heart failure” such a horrible expression, in his 50’s and died recently, a month before his 97th Birthday from a non related heart problem. Basically he died of old age. Although he was suffering with a heart that did not work 100% so needed help he did not let this hold him back. He was eventually fitted with a pacemaker, in fact he had his pacemaker upgraded when he was in his 80’s . He was checked on a regular basis to ensure he was fit to drive and his heart pacemaker was monitored remotely from a device in his own home. He had a fabulous life travelling with my mother all round Europe in his motor home. He took his heart medication which improved his “heart failure” he watched his diet and lived his life. Take care x

[Yorkshirehead]

Hi,

I have heart failure and was told it would reduce my life expectancy. That was almost 12 years ago and I’ve just turned 70!! I can’t complain but the diagnosis does focus the mind quite a bit. The trick for me is to focus on living a full life and not dwelling on the what ifs.

Heart failure doesn’t mean it’s the end. It is a new beginning, managing your life in a different way.

Keep smiling together and live your lives to the full. This works for me.

Very best wishes to you both.

[Andian]

I feel really moved to hear your story. As others have said do have a look at Pumping Marvellous especially their Facebook site, it’s just for HF people. I am much older and was told in August that I have HF, but I still have a lot of living to do. The HF Nurse is very encouraging and tweaks my medication to manage things as best as possible. I hope you have contact with HF Nurse. So keep your spirits up gradually acceptance will help you both. They should find a better way of saying Heart Failure because it doesn’t mean Failure as such. Xx