I'm new here.

[Bellywiggle]

Hi Everyone I'm new here I was diagnosed with Dilated Cardiomyopathy this June I'm still in shock as I've always been fit.

[lettingoffsteam]

Welcome to the forum.It's always a shock joining this club but we're a friendly bunch.😃

[Bellywiggle in reply to lettingoffsteam]

Thank you.

[kingsnorth]

Welcome

[She-Creature]

Hello there,

I am new here too. My husband was diagnosed with dilated cardiomyopathy in September after a summer in which he struggled to walk and breathe,

He is only 55 and has always been fit and healthy. His cardiologist seems to think it is genetic. We are both very worried and scared as we really don’t know much about this disease.

I would love to hear from anyone who is living well from this disease. Thank you.

[Bellywiggle in reply to She-Creature]

Hi I was diagnosed with dilated cardiomyopathy recently too someone suggested a site to me so you might want to look at it too its cardiomyopathy.org

[She-Creature in reply to Bellywiggle]

Thank you for the response. I’ve been looking at the site. Lots to take in, a great resource.

[Bellywiggle in reply to She-Creature]

Yes I've had a look it's overwhelming but great resources.

[DaveTR]

Hi Bellywiggle and welcome,

I have Dilated Cardiomyopathy too.

I was diagnosed 17 years ago. When I was first diagnosed and received treatment there was some recovery so there is hope.

All the best

[Bellywiggle in reply to DaveTR]

Hi DaveTR thank you for the nice welcome. You was diagnosed 17 years ago that's a long time so how are your energy levels? I am struggling with mine at the moment as I get fatigued quickly it's frustrating as I used to be very active. I hope you don't mind me asking.

[DaveTR in reply to Bellywiggle]

At the time, energy levels improved after starting meds and treatment.

I was working full time up until just over 2 years ago then things changed. With hind sight I can see the gradual changes taking place. Work played a big factor with stress levels. I was part of a small team in a huge and growing organisation.

4 years ago I was blue lighted to hospital and received a cardioversion.

3 years ago received an ICD as heart function not too good. This has corrected dangerous heart rhythms hundreds of times and with 3 full cardioversion.

2 years ago spent a month (on and off) in hospital with severe heart failure symptoms and received an Ablation.

That is when I stopped working.

I feel so much better with the stress of work removed.

My energy levels are low these days but I pace myself. Plenty of rest between doing things. The mind is willing but the body ain't 🙂

[Bellywiggle]

Hi TRST thank you for asking about my condition. I had chemotherapy 18 years ago and it affected my heart it all came out of the blue. I was breathless and couldn't walk very far then my belly started to swell up. I was rushed to hospital suspected Covid then had investigations and discovered I have Dilated Cardio Myopathy. I am on medication but I'm struggling with anxiety and coming to terms with my condition as I'm only 53 years of age. What condition do you have?

[Bellywiggle]

Thank you very much I'll take a look.

[mariancolyer]

I was diagnosed out of the blue too - despite being fit - and 9 1/2 stone - just bad luck. The meds are amazing and I feel that Entresto has saved my life so far. Definitely would recommend it.

[Bellywiggle]

Yes I'm taking Entresto too it is amazing.

[Beats_on]

Hi Bellywiggle I was diagnosed this year with Heart Failure, in March. I got it from Covid and a rare auto immune disease that can effect the heart which I had no idea that I had. It’s a shock. I have always been fit and active. I’m 36. My EF was 10% now it’s 35%, I can’t tolerate the drugs so well due to low BP but hoping to work up to Entresto. I was doing ok but I’ve been struggling with depression and anxiety lately about all this. Feels like you are robbed of a future. Trying to do everything within my power to stay positive. I think it takes time to accept these things. Not sure if you have looked into counselling. I’ve tried everything, meditation etc. Can’t do yoga now which I miss. The fatigue is frustrating but in time you may be able to build up your stamina. I walk and have slowly increased. There are many people here know what you are going through. Don’t lose hope! X

[Bellywiggle in reply to Beats_on]

Hi Beats_on yes I understand what you mean it does feel like you've been robbed of your future. But we must try and stay positive it is hard I'm struggling myself but talking with people on here does help. I am considering speaking to a counsellor. I don't know if you've heard of the website Pumping Marvellous but they have workouts on there of yoga for people with heart failure I've started doing them as I love yoga too. Take care xx

[Beats_on in reply to Bellywiggle]

I have a therapist and it’s been great during this time. I am in the pumping marvellous fb group. Lots of support there. I’m lucky in that I can still work, and do some exercise. Some people have it much tougher. All the best. X