Living with Dilated cardiomyopathy

[Familyk]

Hi everyone Very recently diagnosed and feeling totally overwhelmed. Would really appreciate to hear from you and how you are coping and dealing with DCM

Thank you

[Hidden]

Dear Familyk

I am so sorry I don't have this particular condition and I have just dropped you a line to welcome you to the forum and the support that it can provide.

Hopefully very soon you will have someone along that will be of more help in that dept for you, in the mean time as you posted a list of others that have asked your question is up now on the righthand side of your post.

Maybe there are some answers there for you.

The main thing that I and many others can support you with is the fact that you are not alone and regardless of matching you exactly in diagnosis, our recovery and treatment can be remarkably similar.

Take care and we will be looking out for your continuing journey.

[Familyk in reply to Hidden]

Thank you. My feet haven't touched the ground since finding out. I'm scared for the future.

Glad to know there are others out there to chat to.

Take care

[Wodney1966]

Hi I have had dcm since 2015 I just take every day has it comes have gd days n bad days just sad I had to finish work through it got my icd looking after me lol

[Familyk in reply to Wodney1966]

Thank you for replying. I am sure once I have processed everything I will be more positive and as you say take each day as it comes.I'm hopeful medication will improve my EF.

I am a special needs teacher and can see in the future that I will have to stop. It's such a physical role and I'm exhausted.

Glad you are being looked after x

[Kswinster]

hi there. I have DCM. I’m a full time carer and work part time from home. Some days are harder but many days I walk, swim, attend hospital appointments, school meetings (my daughter goes to a special needs school), complete hours of therapy and have so much fun. It’s not easy processing everything so take your time. It gave me a different outlook. On the positive side it helps me prioritise what I need to do and what I’d like to do and make to most of my choices. On the negative sometimes I feel overwhelmed and scared. But those feelings pass. I find this forum useful to read too. You’re not on your own. Katy

[sparklesmark]

Hello. I was diagnosed July 2021. Like you it came as a complete shock to me. I'm on medication treatment which is definitely helping. At my last review my moderately to severe enlarged heart had shrunk to mildly dilated and my heart functioning had improved to 45 - 50%. I can remember being in your position last year questioning what the future holds. But with the passage of time in the past year, taking each day as it comes I feel a lot more hopeful about the future. If I'm going to give any advice allow time for the medication to work and find your new limits. Once your established on medication there should be no reason for you not to lead a normal life but listen to your body when it says slow down. I have also found the support of Cardiomyopathy UK a great souce of help and support. Especially the local support network I link into. They have the perfect knack of reminding you of your strengths as a human being despite your new found limitations. Take good care of yourself

[Silvasava]

Another one here with DCM - I found out in 2021, it's a huge shock isn't it? Still coming to terms with it but I'm slowly improving with a cocktail of meds and various tweaks. My energy levels are improving and my breathlessness is lessening and I'm realising it's not the end of the world. It's a huge learning curve too so please be gentle with yourself, there's lots of support here and on other sites that Sparkles has mentioned. Good Luck x

[Familyk in reply to Silvasava]

Thank you for your support.Started on medication, fingers crossed they help. Just need to keep telling myself that I am going to be ok instead of thinking the worse.

Really appreciate your message x

[Silvasava in reply to Familyk]

Whatever you do keep off Google! Most of it is out of date. Use websites like the NHS, BHF or there is a Cardiomyopathy website that I found a great help when I was first diagnosed and so frightened. This forum ia very helpful and supportive too, hang in there!

[Redfox70]

Hi, I was diagnosed with DCM in Feburary this year. My goodness it was a shock as I only thought I had a chest infection! The shock has lessened and I'm now doing things that I never thought I would again. I'm walking further now and continue to feel like I have more energy. My EF was 15% when first diagnosed, but has since improved to 50% with the help of the medication. I just have to listen to my body a bit more nowadays and rest if needed. It's hard at times but I am comforted by thinking that I've come so far since February. So I would say be kind to yourself and remember there is great support out there.

[Familyk in reply to Redfox70]

Hi,Your message has helped do much. My ef of 32 is all I keep thinking about. Hearing that yours has improved has given me hope and some positivity.

I really appreciated you replying

[Bekiebexs]

Hello Familyk, I was dIagnosed with DCM in 2008 .

I too worked in school till I was 65, I was a full time T/A also did breakfast club which started about 7.30am .

14 years on still here 😃 and recently had ICD fitted .

My medication has increased in the last year also with ICD has improved my quality of life .

I have good days and not so good days just like Wodney 1966 said . Oh so thankful for the good days and great care I have had from Cardiologist.

It is so overwhelming when you are diagnosed but you can still have enjoyable life 😊

I wish you all the very best x

[Familyk in reply to Bekiebexs]

Hi,Thank you for replying.

After reading your message I felt so much positivity . I can do this!! It's just going to take time.

Wishing you all the best x

[Harveyone]

Hi Yes can be quite scary after being diagnosed.Take one day at a time.ime sure once your meds kick in you will feel a lot better and positive.I have same condition,try pace yourself each day and do a little more.Would be interested in how your getting on feel free.

[Familyk in reply to Harveyone]

Thank you for replying. What medication do you take?

Nice to know there are people to talk to who understand how I am feeling x

[Harveyone in reply to Familyk]

Hi I take Bisoprolol 2.5 Ramipril 1.5 & 2.5.

Also have a crt d device seem quite stabilised now and can walk about 4 to 6 miles a day don't fatigue to often although man flue at the moment.I eat plenty of fruits and watch the fats.

Hope this helps

[Familyk in reply to Harveyone]

I was on ramipril until yesterday but my BP was too low. Losartan hopefully better. I'm definitely feeling more positive.

[Harveyone in reply to Familyk]

Hi, yes a little bit trial and error with the tablets so takes a little time to get you on the best.You should feel a lot better when they do.Lets know how your getting on.x

[Prestwick]

I too have DCM diagnosed in 2020. I had an EF of 33 which with medication and changes in lifestyle has risen to 47. I did give up f/t working and only work a few hours a week now but I feel much better.

I have off days with extreme tiredness - usually after I have overdone it but I am thankful to have a good quality to life. I was very shocked at the beginning but very much appreciate that for me at this stage at least, it hasn’t been as bleak as I thought.

Best wishes to you

[Familyk in reply to Prestwick]

HiMany thanks for your reply.

Hearing that your EF has increased makes me feel more positive. I'm obviously only at the beginning of my journey and everything has seemed very negative.

I do not think I will be able to return to my current role which is really upsetting as it is the job of my dreams and I would really miss it. I am wondering if you have to tell a new employee that you have DCM and what impact that would have. I need to work, especially with what is happening with utilities at the moment.

So much to think about long term.

Thank you x