Hi my 51 year old his back has just been diagnosed with DCM. It would seem to be in a slightly milder form (I think). The only symptom he has displayed has been slight palpitations, feeling like a skipped heartbeat. His initial echo showed an EF of 38%.
For the last few weeks he has been on entresto 24/26 twice daily, bisorpolol 1.25mg daily and empagliflozin 10mg daily. After two weeks on this medication, his EF has gone to 46% as shown on an MRI. I was feeling positive and after initial blood tests have been taken, his cardiologist feels that with an increase in dosage, this can be even further improved.
It all seems vey scary now and he has been very quiet and reluctant to talk about it. He seems to be brooding and feels that his life will now massively change. He has been told to avoid alcohol and caffeine etc but there doesn’t seem to be any limitations to what he can do. As I have said, he has no symptoms at all.
I guess I just wanted to tell my story and hope for some advice on dealing with this more. It seems to be a very supportive environment.
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LizzieS33
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Hi. From my experience it is unnerving but one can carry on normally after getting over the initial diagnosis. That was 17 yrs. ago. I still walk briskly and jog. This has been my experience only. All the best.
Hey I have DCM too. Although I'm on the more severe end but improving. I was diagnosed 3 years ago now. It was alot to take in and I switched off. I still carry on as normal and I have two young children. You do what your body will allow, I can get tired quiet easily or have days were I feel worn out. I still do light exercise and every day things. If your husband has a community heart nurse, give them a call as they are very helpful too. Hope all goes well x
Hi, I was diagnosed with DCM 21 yrs ago. I am now at the severe end. When I was diagnosed my EF was 43%. It went to 10% 5 yrs ago but last year it was 23% due to the meds. I have carried on normally worked and tried not to dwell on it. Arrhythmias do occur which is why I ended up 13 yrs ago with a pacemaker and 5 years ago it was changed to a pacemaker defibrillator (CRT-D)
While his EF has risen to almost normal and he doesn’t have symptoms, he can get on with his life avoiding what he’s been told to avoid.
The initial diagnosis and weekd after are tough. It's hard to think that you may have to have a different life. I'm actually enjoying life more because I can't drink much alcohol anymore.
I still do everything I used to, i even went snowboarding a few weeks ago for the first time since diagnosis. And i was fine. Except I broke my back in an accident on the last day. (not heart related). If I hadn't had the heart problem, I wouldn't have handled the broken back as well as I am. But I was mentally and physically in a great place to deal with it. So what I'm saying is that it has actually had a positive affect on my life in many ways.
It's can get you down, and that's normal, but I think it's important to focus on what we have, not what we haven't got. And actually, as long ad you feel well, take the meds regularly and keep an eye on your vitals, you can be 'normal'.
My first 2 weeks after diagnosis i spent in hospital and had no improvement.
I was 24%, and it has taken me a year to get to 43%. So if I were him I'd be chuffed I was improving so quickly. He only got another 7% until he's in the normal ranges. (55-70%).
Good luck.
P.s nutrition is very important. Steer clear of junk! Especially salt. Thats the worst for the heart.
I am a newbie to the DCM club, a very recent diagnosis on 24th April 2024.
I am very encouraged by the earlier posts on this thread.
It may be that your husband needs time to come to terms with a change in his health. Maybe the thing to do is make him aware of the support that is available for him: the cardiomyopathy uk website etc and give him the space to seek out information/support when he's ready. It may be that reading about other people's stories about their life with a heart condition similar to his may help him feel less glum about his future.
My aim, (as is the aim for everyone with a heart condition I imagine) is: to stay as well as I can for as long as I am able.
So take the meds, be guided by your cardiologist/heart failure nurse/cardiologist clinician and GP. Know your individual limits (food, exercise and energy) Then get on with the messy business of living as best you can.
Hi Lizzie, my husband was diagnosed with DCM in his 50s too. We found it takes quite a bit of getting used to, each of us in our own way as we’re coming at it from different perspectives - him as patient and me as wife.
We’re 6 years on now. Life is different from before but not in a bad way. I think you gradually adapt as everything settles and a new normal establishes.
Have you discovered Cardiomyopathy UK? They’re a brilliant charity with an excellent website and fantastic nurses on their helpline. I’ve spoken to them several times and they really helped signposting ways forward, suggesting questions to ask and being very supportive of the emotional side of things too.
We found there wasn’t really much guidance in what to do or not do. The best advice we had was shortly after he was diagnosed from one of the cardiac doctors on the ward. He said life’s for living, so live it. Just be sensible with a good diet, drink alcohol in moderation, get exercise and fresh air. And do the things you enjoy.
My husband soon found his limits, usually by overdoing things and then grumbling about the time it takes to get his energy back! In an ideal world he would have tried things in increments instead of all out, but that’s not real life.
I’m afraid I’m a fusser and he doesn’t really like being fussed over. We agreed that he’d let me fuss and I’d limit it to things like meals but not things like him going out on his motorbike. I don’t fuss any more as his condition has settled and he’s doing well.
I found this forum a great help too. There are so many lovely people on here. But if your husband is like mine, and it sounds like he might be, he didn’t and doesn’t talk about the impact much. All you can do is look after yourself and be there for him as and when - which you are doing now.
Best wishes for you, your husband and family. Feel free to post on here or message me if I can be of any use.
thanks to everyone who has replied. I am hoping that with a little time he can adjust a bit more to it. It has been so reassuring to read everyone’s supportive comments. Thanks so much x
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