dilated cardiomyopathy and heart failure

[Archiebear1]

I’m just coming up to a year since my diagnoses and things haven’t progressed like I’d hoped.

I’m still sleeping a lot during the day I try to help with school runs and around the house but have chronic fatigue so I am unreliable to help.

I’ve had my Disoprol reduced as the heart nurse said that could be causing it. I can’t go back building even though I’ve had my own business for 25 years which I loved I’m now stuck at home feeling very low.

I really want to work again but I’m scared I never will.

Ive just had an X-ray on lungs as still so breathless when resting.

Haven’t seen the consultant since leaving hospital in February but regularly see the heart nurse I’ve tried rehab and have had 2 MRI ‘s this summer but little feedback.

Feeling stuck in limbo I was turned down for PIPS but the UC I receive doesn’t cover the mortgage & bills and at risk of losing the house.

Ive been told my meds have made an improvement but still have really bad days

How does everyone else survive ????

[56dick19]

hi I have dilated cardiomyopathy diagnosed about 7 years ago. I went off sick for about a year. I did go back to work for a about a year but was struggling with fatigue and then started almost passing out a few times a work. I had to have a ICD implanted and they took my driving license away and went off sick again and eventually I was told that I would never be fit enough to work again. I got medically retired. I still suffer with fatigue and sleep a lot

[Archiebear1 in reply to 56dick19]

I’m hoping to get an ICD fitted has it made a difference ???

[56dick19 in reply to Archiebear1]

hi it has never gone off as they also gave increased my medication of Bisoprolol to 12.5mg maximum dose in supposed to 10mg which worked for a while but aventually had to go on Amiodarone which they where keeping in reserve. That has effected my eyes and skin but got my heart under control but still suffer from fatigue

[Archiebear1 in reply to 56dick19]

the thought of not having a driving license scares me it’s my only independence

I’m on Entresto & Dapaglifozin both new drugs meant to amazing heart nurse says I’ve made great improvements don’t feel it !!!

[56dick19 in reply to Archiebear1]

hi I’m on both of those. Haven’t noticed any difference. The main thing is I fill ok and can do my hobbies but not anything strenuous. I get out of breath just carrying the washing up stairs and can’t walk far with out stopping for a rest and can’t do slopes. Hope you go on ok and get back to in to work I was lucky to be employed so got medically retired

[MyHF]

I am 36 years old. In October I was diagnosed with severe heart failure and also cardiomyopathy. I’m still waiting to find out exactly what I have but what I do know is my cardiologist thinks it is hereditary due to my family history. I have been taking dapa since October and was switched from ramapril to Entresto at the start of December and have just moved onto the next strength of it yesterday. I’m also on the other usual meds.

Like you I am very keen to get back to work as Iv always worked from the age of 12 years old. I changed my job around 6 months ago and it’s very labour intensive but my boss has said they will find something easy for me to do. The main difference is I feel physically fine to return to work but the cardiac nurse and gps don’t think I should return. I have my next appointment with cardiologist on the 23rd of this month so hoping for some good news then.

Hopefully you will start to feel better soon!

[Familyk]

HiI really feel for you. I was diagnosed with DCM and ventricular tachycardia in October. Wasxa huge shock. I'm only 53 and had absolutely no idea I had it. Just thought I had long covid symptoms. My ef is only 32 so very low.

I'm starting on entresto next week having been on losartan and ramipril for a period of time. I also take bisoprolol for the ectopics and an icd has been mentioned.

I had the best job ever, I absolutely loved it, but I made the decision to resign as I didn't feel that the children I was with were safe in my care. It was such a hard decision. I work with SEN children and physically the role was too demanding. I had worked for many years alongside these very special children so it was heartbreaking for me.

But, I saw a different role and applied. I spoke honestly and openly at the interview about my condition and they have offered me the position. I start next week!! Eeek!

I'm very nervous as I've never worked in this environment before and I'm starting on entresto so timing not great. But I had to have a target in mind or I knew I would go stir crazy! Also I didn't want the financial burden on my husband, I want to contribute!

I really hope you find your answers. It's very scary for people with heart conditions.

Be kind to yourself

L x

[Thanksnhs]

Hi I got diagnosed with cardiomyopathy and severe heart failure when I was 58 I was medically retired, I had a small works pension and I received PIP. have you appealed the decision as I believe a lot of people get turned down but on appeal they are successful, I had help from my local council's advice centre, I live in Scotland, they were fantastic I don't think I would have got it without their help. The other benefit I get is EESA which is non means tested, I am in what they call a support group as I am unable to work again. I hope you can get the help you need as all the financial worry on top of such a serious illness just adds anxiety to the situation. Char

[fishonabike]

i'm sorry to hear that you find yourself in this position - i won't comment on the medical aspects but on the benefits front I know that applying for any benefit is extremely hard work and can be depressing, even worse when your application is turned down

I turned to the Benefits and Work website (benefitsandwork.co.uk/) and forum when i needed to make my applications for Incapacity Benefit (as it was back then) and PIP - they have all sorts of helpful guides and a forum for asking for advice. It costs a few pounds to join but it is well worth it - their advice got me through applications and an appeal when a renewal was turned down

You mention that you have chronic fatigue, if you mean Chronic Fatigue Syndrome and/or ME this will slow your recovery after any condition and it can affect your response to medication. I have ME and found that the cardiologists I saw had absolutely no idea of the impact this had on me, but your heart nurse might be more understanding. I know it's hard to take another blow to your health, but i find that careful pacing and monitoring of myself are really the only way through recovery and coping in general. Good luck.🌺