Living with heart failure

[Archiebear1]

In February I was diagnosed with severe heart failure / dilated cardiomyopathy I’m 50 years old I have chronic fatigue but the meds are starting to work I’m not so breathless anymore. I’m waiting for an MRI at Oxford but until then my life is in limbo I’m a builder so no chance I can work so I’m feeling quite low and wondering is it life over ?? Feeling the financial pressure on top of my illness my late father also had cardiomyopathy

[Wodney1966]

Hiii I've got same as you I had to finish work at 53 put out to pasture lol I get pip and esa n universal credit I get by been told I will never work again 😅

[Archiebear1 in reply to Wodney1966]

Yeah I fear I’ll be the same as you

[Cherrelleford]

Hey. I have dilated cardiomyopathy I'm 35, got diagnosed last April. I haven't been able to work since. I was told to find a work from home job or something that is not strenuous like office work. I've had an ICD fitted because of it and have a lot of meds. I can still do a fair amount but do get very tired etc. I hate not working, I'm on universal credit, waiting on a health and disability assessment. The reason I cant work is because my EF is 15%. Speak to your cardiac nurse or consultant and see what they say. X

[Archiebear1 in reply to Cherrelleford]

Thanks for the afvice

[Hidden]

Dear Archiebear1

How sad your post is that you think that you are alone with the shock of being diagnosed with heart failure.

The shock will pass and at the moment you are at the start of your journey and there are a lot more steps to go through yet.

One of the main ones is to be able to accept that diagnosis and how it will impact on the rest of your life.

Maybe you have had more information than you are telling us at the moment, but with out knowing it all it will be hard for you to make decisions on your future.

All of us to some degree have been in this situation {not that it helps you} and how to balance the life you have left has been a puzzle for the majority of us.

But you will get there, you are not alone, far from it and there is help out there for you.

My first stage on the benefit nightmare was to book an interview with someone from citizens advice who helped me no-end in sorting my way through the nightmare forms.

Many on here have different stories to tell you on how they obtained help and I’m sure they will be alone soon to help you as well.

Take care and please if we can help in anyway just ask, we are here for you.

[Archiebear1 in reply to Hidden]

Thanks for your advice

[Harveyone]

Hi Archie,I also have the same condition as yourself,had it a bout a year.My health has now greatly improved after having a crt d device and of course the meds.I can now walk two to three miles a day at a reasonable pace.Started off increasing tempo a little bit each day.You will get there one day at a time.You will improve.

Chris

[Archiebear1 in reply to Harveyone]

Great to hear hopefully I will get there in time thanks

[Shar28]

Hello Archie, it’s a huge shock when you have a diagnosis like this and it takes time for things to settle down. Have you discovered the charity Cardiomyopathy UK? They’re brilliant! The website is very informative and the nurse helpline is staffed by super knowledgeable and kind nurses. Here’s the link - the phone number’s on the front page. cardiomyopathy.org

The limbo waiting for appointments is awful and stressful in its’ own right as you don’t know quite where you stand. But in the meantime the meds will be helping. As for work and finances you may find Citizens Advice Bureau are really useful in guiding you through the benefits you may be able to claim etc.

The meds are really good and often help your heart improve. My husband has DCM and his EF improved from 10-15% on diagnosis to 25% in a matter of months after starting meds. There are various treatment options so it’s a matter of finding what works best for you. It takes time unfortunately.

In the meantime, please tell us how you’re getting along and ask questions. The chances are someone will have been in the same situation or have the same issue and they’ll be along to support you.

All the best to you and your loved ones.

[Archiebear1 in reply to Shar28]

Thanks for the info I’ll look it up

[Wire57]

Hi ArchieAt the start of Oct 2019 I thought I was a super fit 62 year old, spent two hours, five days a week at the gym, walked or cycled everywhere and completed hundreds of scuba dives all over the world. I woke up out of a coma at the end of Oct, after having a cardiac arrest whilst out with my wife. She performed CPR with several others for over five minutes until a defibrillator arrived, this was followed shortly by the North Wales Air Ambulance medical team. I later learnt that I had Dilated Cardiomyopathy and an EF of 10%. I had a CRT-D fitted put on the right medication and now my EF is 35%, I now walk approx 8 to 9 miles a day sometimes walking as much as 17 miles ( strolling not a fast pace).

In Nov 2019 my world had ended I got out of breath walking across the room, now the only things I don’t do aren’t because I can’t but it would be against medical advice.

I’ve put all this not to say look at me, but to show with patience, medication, listening to the professionals, mild exercise and looking at what you can do not what you can’t, you can still play an active part in society and enjoy life.

I have to admit I have an advantage over many people in that for over ten years I have been a trustee and volunteer with a disability charity and over this time have been surrounded by people who are so positive and live every day to the full, most of these would swop me tomorrow and if they can enjoy life I have nothing to moan about.

Take care and good luck for the future.

Remember It’s not what you can’t do it’s what you can, there are many new challenges to have a go at.

[Archiebear1 in reply to Wire57]

Thanks for the reply that’s great that your EF increased as I was under the impression my EF won’t improve due to the damage done. There’s hope

[Archiebear1 in reply to Wire57]

Wow incredible Thanks for sharing and for hope

[Neeran]

Hi thereSo sorry to hear what you are going through, I know it’s so easy for us to say but try and stay focussed and positive.

It must be hard going from a fit guy to bring so tired.

That’s what I’m struggling with so much, I was a fit fitness instructor and now struggle everyday to just get by. I have AF but waiting on results of heart scan as they suspect more.

Try and rest in between whatever you do that certainly helps. Eat healthy but more important keep your mind positive, that honestly will help you, if you are feeling good emotionally you will feel “ better “ physically.

Take care hope it all goes well.