Once diagnosed, given medication and sent home from hospital with Cardiomyopathy, Hearth failure, what then. What can and can't I do?

[Rodney10]

Can I live life as before, apart from diet, no alcohol, no smoking? I am very confused!

[Thanksnhs]

Hi morning, I was diagnosed with the exact same thing four years ago at 58, I took all the usual meds, entresto, ferusomide, bisoperol, my cardiac team were great the only big no no was smoking, I didn't anyway, I was told to keep within the national guidelines for alcohol and that was basically it, I am not overweight or have high cholesterol so diet didn't come into it, I just lived life the same all be it slower, I went abroad swam in the sea, enjoyed a sangria in the sun, I tired badly but I done most things, I got an icd which I thought was great, my insurance policy, I got a transplant last July, and things are so much better char

[Rodney10 in reply to Thanksnhs]

Thanks for the reply, a heart transplant! is that the only hope for longer life?

[Thanksnhs in reply to Rodney10]

the meds are amazing now and lots of people get there EF back up to near normal, mine was caused by a faulty gene that went undiagnosed for 58 years, I only found out when I collapsed, mabe if I had been diagnosed younger all would have been fine, but a transplant was the only answer for me, I didn't have to take it but my cardiologist thought it was for the best and at the moment I agree with him, after my echo on Friday he said it was the best heart he has ever seen, my steroids and immunosuppressants are now getting reduced, I was so happy to hear that, char

[Sunnie2day]

You should be assigned a Heart Failure nurse soon - if you don't get one in the next fortnight, chase it up with your cardiologist (usually the secretary, actually - make friends with her/him as that person is going to be quite helpful as you go along).

Also, the BHF has free downloads of very informative leaflets, and the Heart Helpline cardiac nurses are, by all accounts, superb sources of information. I'm listing the links below, be sure to scroll the entire page(s) to find what you need:

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

Please keep us posted as you go on. Welcome to the group, and remember - there simply is no such thing as a stupid question while you come to terms with your re-mapped future.

[Rodney10 in reply to Sunnie2day]

Thanks for your reply, I have a cardiac nurse, who I have seen once! If I ring and leave a message she never replies. Very frustrating, do you normally see them more often?

[Sunnie2day in reply to Rodney10]

Erm, my assigned cardiac nurse isn't exactly 'my biggest fan' - I find my cardiologist's secretary much more helpful. As I don't often need to talk with that unfriendly (but professional, I do have to give her that) nurse often, I'm not all that bothered.

However - if she ever ignored any attempt to communicate, I'd report her immediately and ask for a new assigned nurse. If no new nurse were assigned, I would escalate up the chain in (pardon the pun) a half-heartbeat.

Heart problems are bad enough without having to cope with an unprofessional cardiac nurse who ignores attempts to communicate!

I'm in Scotland but England, Northern Ireland, and Wales are the same when it comes to patient complaints, requests for a different care provider, and any need to escalate up the chain.

[Rodney10 in reply to Sunnie2day]

Thanks I hadn't considered that. I will get on to it immediately.

[Shar28]

Hello Rodney, being diagnosed with cardiomyopathy isn’t the end of the world as you know it but it takes quite some time for things to settle in my husband’s experience. He was diagnosed with Dilated Cardiomyopathy just over 4 years ago. His EF was 10-15% at the time and the options were drugs, ICD, transplant if he didn’t improve. But he did. The drugs did what they were supposed to and in a few months his EF went up to 25%. He was offered but declined an ICD. Then after a MRI he was told his Aortic Valve was stenosed (narrowed) and regurgitating (letting blood drop back through from the atria to the ventricle beneath) and far too much blood was remaining in the ventricle instead of being pumped round his body. He was born with just 2 petals on his Aortic Valve instead with the usual 3 which predisposed him to this happening but didn’t know until this point. So he had it replaced. 6 months after that his EF was still 25% but a year later was up to 41% which is amazing.

The best piece of advice he was given was during his first week in hospital when he was ill initially:

Life is for living so live it, just not to excess

Do enough, but not too much. You’ll find out where the line between the two is when you do too much! In which case rest and then carry on.

He drinks within NHS guidelines because his cardiomyopathy wasn’t caused by alcohol and eats reasonably well but not perfectly! He took early ill health retirement and keeps busy with cars and motorbikes, jet ski, bicycle and until Covid, the gym. And grandchildren too. So life is different from before but good. More paced.

Have you discovered cardiomyopathy UK? They have a brilliant website and a fantastic nurse run helpline. Here’s the link

cardiomyopathy.org

Everyone’s different and everyone’s heart journey is different too, so you have to find your own path. But there’s loads of support from Cardiomyopathy UK, BHF, this forum, your doctors etc.

All the best to you and your loved ones.

[Rodney10 in reply to Shar28]

Thank you so much for that, I am grateful for any and all information. Until my diagnosis there was no sign I was ill. I have always had sinal tachycardia, but was told "Nothing to be concerned about". I will look up the website you recommend. Hope all goes well for your husband and you.