Dilated Cardiomyopathy at 33

[CharlieLNicholls]

Hi everyone, I’ve just been diagnosed this weekend with dilated cardiomyopathy having been suffering with shortness of breath and palpitations. It appears it’s been caused by chemotherapy I had for Leukaemia 12 years ago. I’m absolutely terrified and would love to hear from anyone else living well with dilated cardiomyopathy, any tips or support will be hugely appreciated,

Thank you xxx

[Fismith69]

Hi Charlie, I’m 48 and was diagnosed with DC 3 months ago, it came as a massive shock as In sure it did with you! What I’ll say first and foremost is DONT Google anything! It can frighten the s**t out of you. The British Heart Foundation website and the Cardiomyopathy.org websites are amazing! So much positivity! And they do a fab welcome pack with all sorts of information, it’s free and well worth ordering! This app , HealthUnlocked is great, everyone is so supportive and if they can’t help they can normally point you in the direction of someone who can. As for your mental state of mind, the best thing you can do it to try and stay positive, having an understanding family/ friends helps. I actually feel better than I had done in months, once I was medicated I felt like I had a new lease of life, my EF has gone from 23% to 30% and my scans show there’s not clogged arteries or calcium build up! Im under no illusion that I’ll always feel this good but I’m makin the most of if while I can! I’m off to Prague today for a 5 day break, and I’m going to enjoy every minute of it! It’s not all doom and gloom having a ‘wonky heart’ as I like to call it! Look after yourself Charlie ! 😊

[CharlieLNicholls in reply to Fismith69]

Thank you for your supportive words. I’ll definitely check out cardiomyopathy.org so thank you for that. Enjoy Prague 😀 x

[Fismith69 in reply to CharlieLNicholls]

Let me know how you get on with everything, I don’t know anyone on here as such with what we have, and just a useless fact did you know there’s only 160,000 people (approx) in the UK have DC , that’s not a lot when you think about it! 😊

[CharlieLNicholls in reply to Fismith69]

It really isn’t, I heard it’s 1 in 250 so it’s probably the same figure. I’ve requested my booklets on cardiomyopathy.org so hope they help. 😀

[P0rtnahapp1e]

Hi CharlieLNicholls , one of the side effects of having any heart diagnosis is anxiety, so as long as you remember that it’s a physical response to your condition it somehow feels better.

I was diagnosed with AF, then heart failure and lastly dilated cardiomyopathy .

As Fismith69 says, the original diagnosis of any heart condition is a shock, but that wears off and once your medication settles down to whatever is appropriate for you, you’ll feel better. I feel great and am probably healthier than I have been for years since I’ve cut out alcohol and eat well.

You’ve been through a far more serious condition in the past and you’re still here, so believe in yourself and your doctors. Do you know if they are considering controlling it with medication or a pacemaker?

When you have an appointment either take a friend or at least notes of questions and also, write down what you are told. When you are frightened and confused it’s difficult to remember information.

My medical team reckon mine is hereditary which obviously means I’ve had it all my life, and I’ll be 70 in August with a long way to go yet I’m sure!

Stress can have a detrimental effect on your health, so try not to worry, and pm one of us or come back here if you have any questions or just feel like a natter.

[CharlieLNicholls in reply to P0rtnahapp1e]

Thank you so much xx

[P0rtnahapp1e in reply to CharlieLNicholls]

Hi, just came across this and wondered how you were a year on from your original post?

I’m on Entresto and am feeling great, doing things that I never believed I would be able to do when I was in the early stages of diagnosis.

Hope you have adjusted to your new regime and are feeling better about it all.

[Choccybun]

I too have just been diagnosed with this, it is scary, 5 days before doing English exams, I have been put on beta blockers, ace inhibitors and diuretics. Started on lowest doses of all tablets, but will be increasing dose of beta blocker very shortly, anxious of what side effects. How are you coping with your news?