Severe heart failure

[AEJS]

6 weeks ago after months of being unwell and struggling to breathe I was finally diagnosed with dilated cardiomyopathy and very severe heart failure. My heart is functioning at 15% of it’s capacity. I am 42 years old.

I have been put on a cocktail of drugs and given advice for how to spot if things are getting worse but it has been made quite clear that I will never get better.

I am devastated and very frightened about how much future I have and what exactly that future has to hold. I’ve tried talking to DH about how I feel but he just keeps reassuring me that I’ll be ok. I suspect he’s just as frightened as me.

I have 2 teenage boys. They know a little of what’s going on but not how serious it is.

What I really need is not reassuring but listening to and understanding. Help!

Your GP or consultant cardiologist should be able to give you details of your local Heart Failure nurse. They can help you with optimising medication dosages and also talk about how you're feeling. Depending on where you live there may be access to an exercise programme to help you get as fit as you can be.
Things that might be useful to know are: Are you having more investigations or treatment at hospital ?
How to access things like PIP and blue badge for the car.

Hi op hope you are feeling a bit better and second the advice above.
I’m in the midst of cardiac investigations, had a treadmill test a week ago and have an echo lined up week after next. Although I’m feeling much better now, the week leading up to those tests was horrendous. The fear and anxiety is overwhelming and you can’t think of anything else. My dp was overly positive too but I just wanted to vent my frustrations more than anything. I found the British heart foundation website really helpful regarding medication and procedures and I believe you can speak to specialist cardiac nurses also. There is also a public forum where you can post questions.
Maybe you could ask mumsnet to move your post to the general health section as I’m not sure how much traffic this one gets, admirable as it is. Hopefully you may get a few more responses. Take care and don’t feel awkward pushing for more info etc

I also have cardiomyopathy but a different type to you. Have you heard of cardiomyopathy uk? They have lots of information and have groups on Facebook too.

www.cardiomyopathy.org/cardiomyopathy-information/newly-diagnosed-1

DH is 41 and in severe heart failure with restricted cardiomyopathy due to amyloidosis.
We went into shock. It was a waking nightmare at first. You will begin to emerge from this awful fog though, into a new normal. I really promise you.