Partner just diagnosed with heart failure at 40

[Carys1234]

So my partner was admitted to hospital last week as he'd been getting really breathless. Subsequently he has been diagnosed with heart failure, and at this point with no known cause. We've both been knocked for 7 with this as he's only 43, and had no previous history of anything wrong with his heart. Obvious the life expectancy doesn't look good, but we're trying to focus on the positives and do what we can to hopefully improve things.Has anyone else been through this though and can share their story? Also any tips on getting referred to cardiac rehab?

[jeanjeannie50]

Heart failure is not as it sounds. All it means is your heart is not beating quite as it should. This diagnosis doesn't mean you're going to die from it. Tests are done and I've heard of people saying that medication has greatly helped. People can live to a good age with heart failure. I hope some of them answer your post. Jean

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Hello

Hearing the words Heart Failure puts us all in a spin but they use the term when the heart is not quite working right , maybe not getting enough blood through and so on but it does not mean that he is not got years ahead of him as usually there is something they can do to correct things

I had 3 heart attacks which led to a triple Bypass but they have caught your partner early before anything like this happened to him

They are really great with what they do now , try and keep of Google they do not have his records , any results so will always spit out the worst scenario

Wait and see what they have to say knowing they will do everything to make sure you have a lot of happy years together to come

Let us know he gets on x

[Hanibil]

Try not to worry heart failure isn’t as bad as it sounds, it just means the heart isn’t working as good as it should, I have heart failure and thanks to the care of my Cardiologist and medication lead a full and happy life.

[Desktop54]

Hi Carys, adding to what everyone else has said, you will probably be given an ef number during your consultations. My husbands is 40%. This does not mean your heart is working at 40%, as a normal ef is around 50% to 60%. I mention this because it frightened us at first. Also everyone on here will tell you not to get hung up on the numbers... it is how you feel that matters. My personal advice is give yourself time. It took us 3+ months before that heightened state of worry started to wane and we are now 15 months post HA with HF and apart from me being an overbearing partner, things are almost back to normal (some accommodations are to be expected). I wish you both all the very best and if you have any questions or worries, this group is fantastic. Take care.

[Larneybuds]

The words heart failure should be changed because they just put immediate fear into people. As lots of other replies have said....it just means your heart isnt working to capacity or pumping properly and needs a bit of help to do so. Please try not to go into a panic. Medication and interventions are so advanced now and people can live relatively normal lives for years with HF. My mother in law is 93 and has had heart failure for 40 years. Best thing is not to use Google for information. Only just recommended sites....British Heart Foundation.... NHS....Pumping Marvellous..people on this forum are knowledgeable from going through it all themselves and are also so supportive. BHF nurses are available to talk to so there is lots of help and advice. I wish your partner all the best x

[Bigbrian]

hi Cary’s

Don’t worry too much about the heart failure diagnosis, this is a problem that can be fixed, but it may take time. Now you are in the system everything should fall into place with echo and mri scans etc. there are a lot of new cutting edge medicines available now so please don’t look at it in a negative way, take it one day at a time and there is light at the end, I had severe heart failure 4 years ago and now my heart is normal. And I’ve never felt better.

[Carys1234]

Thank you for all your replies, its really comforting to see the positive stories. I think what's really worrying is that his numbers put him in the severe category, he was around 25 when he was in hospital so it feels really scary. And because everything feels so unknown. I think we're struggling with the not having a plan at the moment and noone saying for certain this is what your prognosis is.

[1mjd]

I have chronic heart failure, working at about 30%. I have an ICD fitted. Just learn to pace yourself and do not over do things. Life is just as good, just a little slower. Stop worrying and carry on. Take care

[Valentina98]

Hi Carys

Nothing to say apart from what has already been said, but take it from another young person (I'm a lot younger) it sounds scary, but he is under the care of the cardiac department so he is being looked after.

We're here if you need a rant or advice

V x

[irishwife93]

Hi Carys

My husband is also 40 and diagnosed with HF so I know what you are going through. It’s a huge shock and can feel quite scary. The statistics you are seeing for prognosis are often based on older groups of patients in their 70s or 80s so I would first say to ignore those completely. There is a lot of medication available that can improve the ejection fraction which is a measure of your hearts efficiency. You have mentioned your husband has an heart efficiency of 25%. Anything between 50-70% is considered normal. Medication can boost the EF over time, above 50% in some cases. My husbands latest EF reading was 14% and 6 months later he’s still standing. He has to take things easier but he’s able to work, exercise moderately and enjoy most things. Take everything one day at a time and try not to google too much.

[Qualipop]

Oh woah, slow down and whatever you do, don't google unless it's the NHS website. It's a horrible horrible term. It does not mean his heart's going to stop; only that it's not working as well as it should. Until you find out why this has happened you can't know the outcome or whether it can be improved. There are treatments depending on the cause. My mum developed heart failure at 24 after having me. She had eclampsia which damaged her heart. 70 years ago there was no treatment at all but she lived a normal life with no restrictions to 69. Her only problem was walking up gentle inclines and not being allowed a general anaesthetic. She had a hip replacement by epidural. There are many people on this forum with heart failure that has been much improved w ith medication. I know it's a huge sh ock especially so young but wait until tests are done and start now writing down all the questions you have ready for when you see the cardiologist again

[Carys1234 in reply to Qualipop]

Do you know that's one of the things we can't get our heads around, is that so far they've not found a cause and may never find one. Not that it makes a difference to treatment really, but you do want to have answers to why.

[Qualipop in reply to Carys1234]

I agree, the more you know, the more you feel in control.

[uzininemm in reply to Carys1234]

Cary similar to your partner the same happened to me, I was in hospital 14 days and eventually ended up under the head heart consultant of the trust whilst I was there when I asked him why all he could say was that possibly I had had a problem for sometime which I wasn't aware of because I didn't hit any of the risks!

He is in good hands with the meds, good diet, exercise, fluid control etc as others have said he should be able to live a good life (even if it's different to that before).

I am really glad you are focusing on the positives, as the mental side is just as important as the physical side in my book. Carry on enjoying everyday.

As for heart rehab if it was anything like mine it should be done automatically but it might take a few weeks so things can settle down a bit and the meds can start to work.

Take care both of you and I wish you well.

[Weeps24]

Hi CarysI understand how you feel. My partner was diagnosed with heart failure out of the blue. I was out of my mind with worry and we were initially told it was probably die to blocked arteries. He was referred to a heart failure nurse and put on medication he then had an angiogram which showed no blocked arteries!!!. Next he had an mri scan and his heart was found to be near normal with an ejection fraction of 51%.

The conclusion of all this was it was "suggestive of cardiomyopathy, likely to have been caused by a virus. We really don't remember him having a virus and certainly not one bad enough that you would expect to damage his heart. The whole process took almost a year and I struggled with worry and anxiety.

He has to stay on his medication but we have recently travelled around Thailand for 2 months with no problems. So I wanted to let you know things can improve and our consultant did say sometimes it can be ideopathic and no cause may ever be found.

I also joined pumping Marvellous which was and still is a great support with lovely people. ❤️

.

[Carys1234 in reply to Weeps24]

Well that's really interesting to hear his was probably caused by a virus. My partner had chickenpox in February last year, then thrombophlebitis, then covid just before Christmas so immune system took a bit of a battering.I'm really glad your partner is doing so well x