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Sez10 profile image

Hello, I have just joined. Feeling overwhelmed after my diagnosis 😔

19 Replies

Hello, can you tell us what your diagnosis is ?

Sez10 profile image
Sez10 in reply to Isobel1

Hi, it’s dilated cardiomyopathy

Isobel1 profile image
Isobel1 in reply to Sez10

I'm sure tomorrow you'll get lots of support and advice , it's a bit late for replies now . You could try typing your diagnosis into the search box on here. You should find lots of conversations amongst other posters about what you have .Try not to panic, people on here are lovely , and I know you'll get lots of reassurance and information .

I had a different heart condition , so I can't really advise you . I wish you the best of luck . You've come to the right place x

Sez10 profile image
Sez10 in reply to Isobel1

Thank you so much 😊 x

It's no problem xx if you click on your name on your profile , you should find Cardiomyopathy written in blue underneath it, along with some other words . Click on Cardiomyopathy , and it should take you to some helpful conversations on here .It's much better to ask for advice here than doing random searches on the net , which are often incorrect . People here are very kind and knowledgeable .

Hello Sez10……. I got the same diagnosis a few weeks ago. You quickly adjust and the panic clears. Feel free to message me is you have any questions.Regards

Chris

Hi Sez10 and welcome to the forum,It's OK to feel overwhelmed as this is one of those life changing events.

I was diagnosed with Dilated Cardiomyopathy ( DCM) when I was 33.

I'm now 51 now and doing OK.

It may take a little while to come to terms with it. Take as much professional help as you can get and avoid Google. There's a lot of old info on there.

I've found this forum a great help over the years

Hi Sez10, I too was diagnosed with DCM and AF. I was admitted last Christmas and stayed in for a week. It’s a difficult time for you and a lot to come to terms with. First thing DO NOT SEEK HELP FROM DR GOOGLE! I like many made that mistake, the information on it is well out of date and to be honest lots of it is just rubbish. It is important to get your heart team with you, it’s difficult to start with and I know in some areas of the country support is difficult to get. You need referral to a heart nurse, get your cardiologists secretary’s contact address, mine is very good and if I email her I always get a response. It is a long road with the meds, I’m now just about there with mine, I’m on maximum dose for my DCM. Your meds will change over time, mine changed again on Monday. Also if you can get referred to the NHS physiologist. Whilst you think you are ok you do need help to understand what is happening to your life and anxiety does creep in. It took me 6 months to get to a point where I accepted it. Its a new life now. I like most have some days where I just need to rest, just take them and rest. My family have been important and my wife has been a rock through difficult times. Listen to your HF team and take your meds let them know if it doesn’t suit you, get as much exercise as you can. Finally be kind to yourself. It is a difficult change in your life but there is definitely life after diagnosis. I wish you well in your new journey. There are plenty of people on here who will help and support you.

Sez10 profile image
Sez10 in reply to Putterguy

Thank you so much for you message, it makes a lot of sense. I have a problem with exercise as I also have a chronic back condition, so it makes that element hard. 😔

Putterguy profile image
Putterguy in reply to Sez10

Sorry to hear about your back problem. I think any exercise is good if at all possible. Best for the future.

RufusScamp profile image
RufusScamp in reply to Sez10

The BHF site has lots of different exercise programmes. You may find one that is suitable for you.It is a shock getting such a diagnosis, especially when it is totally unexpected. I think most of us here felt the same way to start with. Treatment is so much better than it was even a few years ago, so keep taking the tablets, follow advice on diet and activity, and that will give you the best path for the future.

The way you are feeling now will pass and things will improve, slowly and steadily, 2 steps forward 1 step back. You will need to learn the signs and many are worrying and harmless.

Do you own research as I did, Youtube Dr.Gupta of York Cardiology is a good start. Take a holistic approach and find out what works for you. Then tackle the phychological side which is very important. Then find a healthy unprocessed diet that suits you and is easy to keep to..and makes you happy.

Dont listen to anyone who tells you how hard it will be, it is totally counterproductive, a prositive attitude is what is needed at all times, all part of your psychology training.

Try not to read too many of the harrowing tales here until you are feeling much better (you will) and able to help.

Sez10 profile image
Sez10 in reply to DaveSpice

🙏

Hello. Have you discovered the cardiomyopathy uk website? It’s a fantastic resource and their nurse helpline is brilliant too. Here’s the linkcardiomyopathy.org

Sez10 profile image
Sez10 in reply to Shar28

Hi, yes I discovered them last night, it’s a good sight, thank you.

Hi Sez10Don’t look on DCM as something that is getting in the way of your old life but as something that is opening new doors and challenges to you.

Before I had a cardiac arrest and was diagnosed with Dilated Cardiomyopathy / severe heart failure, I scuba dived on ship wrecks, went hill walking , volunteered for several charities and cycled everywhere. I now cycle in shorter burst, walk on flatter routes and have changed the type of voluntary work I do from physical effort to mentoring people within a disability charity. I was 62 when my life changed and I discovered I had an ejection fraction of 10%, over the last two years my life couldn’t have been better. My golden rules are Do not use Dr Google, listen to your cardio team, listen to your body and look on every day as a new challenge.

Take care and look after yourself.

Sez10 profile image
Sez10 in reply to Wire57

Wow! Thank you so much for advice. Sounds like you are kicking DCM’s butt 👍

Sunnie2day profile image
Sunnie2day in reply to Sez10

And you will too, it takes a wee while but you will get there. Welcome to the Hearties (I'm a Lady Heartie), we're glad you found us:)

Sez10 profile image
Sez10 in reply to Sunnie2day

Thank you 😊

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